This is a blog dedicated to our sweet baby James. He was born three months early, on September 1st, 2013 at 5:04pm. He came into the world at 28 weeks plus 2 days gestation weighing 753 grams (1 lb. 10 oz). So far James has been in the NICU for nearly eight months. He has quadrupled his weight. He can come home when he can breathe on his own and eat on his own. Easier said than done. He was almost there by early January when a respiratory infection sent him back about 100 days. James has fragile little lungs.
We decided to start a blog about little James’ journey in the NICU during his first days of life. James has so many people rooting for him and we hope this will be a good way for everyone to keep up on little James’ progress and come along for the rollercoaster ride.
The text below is organized chronologically so if you want to read the whole story start at the bottom and work your way up. The most recent info is on the top. We will try to update it daily so check back frequently!
We decided to start a blog about little James’ journey in the NICU during his first days of life. James has so many people rooting for him and we hope this will be a good way for everyone to keep up on little James’ progress and come along for the rollercoaster ride.
The text below is organized chronologically so if you want to read the whole story start at the bottom and work your way up. The most recent info is on the top. We will try to update it daily so check back frequently!
April 22 - Day 233 - Last Post, Last Day. James is home
That's all folks. Today James came home from the hospital for good after 233 days in the NICU. What a rollercoaster ride it has been. James' stay in the NICU was much longer than we expected and much longer than most babies.
Today saw a lot of hugs, goodbyes, thank yous and last minute stuff. How do you say thank you to the people that saved your kid's life? The people that work in the NICU are very special. The work they do means so much. We will never forget what they did for James.
I'm sorry to say though that this is going to be the last blog post. I'm going to retire from writing and leave this blog as a record and memory of James NICU stay and nothing more. At some point when things calm down I will put some family updates on stynes.com. But for now, our time is probably better spent with James and the girls (or sleeping) rather than at a laptop at 1am.
I started this blog for one main reason: I couldn't cope with those early days having to tell the same story 20 times to different people when James was born - at the same time as I was trying to deal with what was happening and to make sense of things. This blog seemed to be the only way to deal with that. It grew and grew and once we got in the habit of writing daily we couldn't stop. It has been a lot of fun doing this, as well as a lot of work, but every story has an ending. James NICU journey ended today.
Many of you have told me that reading this blog became part of your daily routine - which is very flattering. Now, after 233 days of writing about James, Joanne and I wanted to ask YOU the readers of this blog, to do some writing. We're asking all of you for a favour: we are hoping you could send James a quick note, by email, mail or phone, just to tell him who you are, how often you followed along, what stood out for you in the last 233 days and any words of wisdom you have for James (or his parents) for the future. I promise we won't post or publish the comments, rather, we would like to keep them for James (perhaps in a baby book) to look at someday. So feel free to be honest and say whatever you want. He might want to know who are the people reading about his every poop, struggle and triumph. You can email either myself or Joanne or both at : sean AT stynes.com or joanne AT stynes.com (in case it wasn't obvious the "AT" should be a "@"). James and Joanne and I would really love to hear from everyone who reads this blog.
I know there are lots of readers across Canada, the USA and Ireland, and a few other places. I was able to get some basic info about the number of hits on the website each day and there seems to be about 100 people who read the blog every day. What I found interesting is that the blog statistics doubled or trippled when things went bad for James. We hit over 300 around the time of the peroxisomal diagnosis and about that many during the dark days of January.
Alright, to finish off, here is my look back on eight months and what stands out for me:
April 21 - Day 232 - Could this be James' last night in the NICU?
We had another great day at home with James. Nothing but hanging around on the agenda. These past 4 days have been so amazing having James home.
We gave James a bath at home tonight and Joanne took him back to the NICU. We are expecting tomorrow will be discharge day so this could be James last night in the NICU. It has been an incredible journey. I will save the sentimental thoughts for tomorrow's post - which may be the last one.
April 20 - Day 231 - Happy Easter
Another great day with James home from the NICU for the day. Today we ventured out to the park a few blocks away with the girls on their bikes and James in the baby bjorn carrier. We had a smaller oxygen tank in a carrying case and the saturation monitor on as well just to be safe.
We had a wonderful afternoon with the girls re-playing easter egg hunts on their own upstairs and Joanne and I got to hang out with James in the livingroom. He likes having his diaper off and being free so we let him do that on the mat for a while. The 120mL he gets at each feed seems to be a lot for his stomach to handle. He starts straining once he hits 100mLs, and we have to keep him still for about 45 minutes afterwards or else that extra 20 mLs comes back up.
We have created a high tech baby monitor system so we can watch James while he is sleeping in his crib. We have the webcam on him which we can view on the TV in the livingroom when he is sleeping. We can also skype ourselves from Joanne's phone. So it is a very handy system. A portable baby monitor.
James has only a few more sleeps at the NICU left and then hopefully home for good. We can't wait for that.
April 19 - Day 230 - Home, Take 2
Today was a repeat of yesterday, and even better. We are working out the kinks, especially around James' feeding and napping. No matter the details, it is just beyond words how nice it is to be at home with James. We are constantly reminded how much better life is when either Joanne or I do not have to go rushing out the door to get to the hospital. James is home, where he should be. Simple tasks, like doing the dishes, are just better knowing James is sitting right there in the livingroom.
The girls are really great around James. It must really now be sinking in that they have a brother and what that means. Audrey provided a good laugh today at breakfast: James fell asleep just as we were about to sit down and eat and so Joanne and I decided to carry James from the kitchen to his crib. This was quite the operation as James was in the middle of his feed. Joanne was carefully carrying James while I was right beside her carrying his oxygen tank, a saturation monitor, a microphone stand with his feed pump attached to it, and at the same time, managing a bunch or wires, tubes and cables. With our hands full with all this ridiculous equipment Audrey says, "Could I get some cutlery over here?" You couldn't help but laugh.
I've posted a bunch of pics at the side. I better sign off as the Easter Bunny is expected tonight.
April 18 - Day 229 - Welcome Home James
Well... after nearly eight months, James is home from the hospital. It's not a permanent homecoming - that will happen next week - but he is home on a "day pass" today and for the remainder of the Easter weekend. In the world of corrections, this is like an "ETA" escorted temporary absence.
Joanne, Claire, Audrey and me were up at the NICU this morning just before 8. James was still sleeping and we woke him up, loaded him in the van and headed home for the day. We had a pancake breakfast and have just been sitting around enjoying having James home. It is hard to describe how great it feels to have James home. For the first time in eight months all five of us can be together, relax and have nowhere to go. We have had a great day so far. I will take him back to the NICU tonight at 7 for bath and bed and we will repeat the same thing tomorrow, Sunday and Monday. Then hopefully home for good on Tuesday, Wednesday or Thursday next week.
April 17 - Day 228
Last night's sleepover was great. James slept through the night and Joanne and I each slept for half the night. Joanne did the 1am feed and I did the 5am feed. Feeding is pretty easy - we warm the milk, put it in this bag, set up the pump and hit start - but we have to be awake while it is happening. James typically sleeps through the evening feeds. So once the 5am feed was done (around 6) and I flushed the bag, I left James and Joanne sleeping and biked home to get the girls, get them to school (including a trip home to get the oxygen tank delivery) and then get to work. Joanne and James had a crazy day of appointments, meetings and goodbyes to people who we may not see again.
April 16 - Day 227 - Rooming In
Well after a crazy day of people in and out to see James, tonight for the first time ever, James is sleeping in the same room with his Mom and Dad. Joanne, James and I have checked in to the parenting suite in the NICU for an overnight. James knew something was up as we wheeled him down in one of the bassinettes. These are the same kind of bassinettes that Claire and Audrey were in for their first few days of life in the hospital. At 12 pounds, James fills it up. Claire and Audrey came home after 2 nights in this same hospital. James will have done about 235 nights before he comes home.
So far everything has gone smoothly. We know how to put his CPAP on on our own and run his feeds through the pump. But the best part was just laying James down on a bed and lying next to him. We really have not had a chance to ever do that - which is nuts when you think about it. It is often the little things like that that make you realize how un-normal it is to have a baby in the NICU and how with our girls we take things for granted; things like breathing, eating, being under the same roof or lying on a bed together. James has every reason to cry his eyes out and you barely get a wimper out of him. He is such a content and beautiful little guy. He is an inspiration.
We better get some sleep because we have a 1am and 5am feed to deal with. Let's hope James has a good night.
April 15 - Day 226 - Carrots Please!
James ventured into the world of purees today! This is a big milestone for James, and it went well. Last week when we introduced James to milk on a spoon, our wonderful Occupational Therapist and I agreed that we'd try him on purees this week. So today, he was hungry, and we went for it. Very small tastes to the tip of his tongue, or a little dab to his lips, gave James the chance to explore the flavour and texture change without eliciting a gag reflex. It was so awesome to see. Definitely not a fail! So for the coming days, we have some peaches, carrots, and applesauce waiting in the wings. Usually they would start off with rice cereal, but for babies like James who have an oral aversion, it's important to avoid grainy textures, like that of rice cereal or pear puree. She has told me of one baby who only wanted lime juice. I'm hoping that James will move forward with an interest in these first flavours, so we'll go slow and steady.
This morning I was able to review the supply order for James. Tomorrow I'll make my first call to our supplier with the help of one of the discharge coordinators and get that all ready to go. Our supplies should be ready to go by next Tuesday. We have been told to plan for a two-month supply with each order, and this next month will be a good introduction to what our needs at home will be.
Sean and I had a cpap teaching session today. Finally James has the same machine in his room as the one we'll have at home, so our training is starting. We are used to the process and routine of his cpap, but this enables us the opportunity to take charge of putting James on each night, and gaining a greater understanding of what each number means for James on this new machine.
Coming up this week, we should be meeting with our home care Nurse Manager and our Paeds Team manager at our house to do an assessment and hopefully by discharge we'll have an idea of when the nursing will start. It's possible that the first few days/week at home we won't have any nursing coverage, so it's likely going to be a wee-bit busier than we're used to! But without the multiple trips to the NICU every day, we'll be able to take it all in stride!
Tomorrow night, Sean and I will be staying overnight in one of the parent rooms up in the NICU to do a 'care by parent' night. One of our wonderful friends will be staying at our house with the girls, and for the first time in his 227 days, James will be next to his Mommy and Daddy all night.
April 14 - Day 225 - Bright-eyed Boy
This week will be a busy one for us as we tie up loose ends in anticipation of James' discharge from the NICU. Today James received his six month immunizations and his first and only RSV shot of the season. He took the shots like a little trooper. Of course there were a few minutes of mighty cries, but he settled in my arms quickly and slept. In the past, James hasn't developed any post-immunization problems, and we expect today to be the same. My hope is that James will qualify for the RSV shot next season as well. The RSV nurse did comment that he will be if he is still rockin' the CPAP, so we'll wait and see about that. RSV is a huge risk to former prems, so our hope is that we can protect James.
I took his prescription to the hospital pharmacy to be filled, and the pharmacist asked if he was being discharged today. I replied no, next week, and she couldn't hide her surprise at how organized the team must be if his script was ready a week in advance! Based on the sheer volume of things to do, order, and learn, it's a great relief for us that the complex care team overseeing James care are so on top of everything.
James finished off his day with a bath by Daddy.
April 13 - Day 224
Today James enjoyed some floor time and we worked on rolling, tummy time, and cuddles with Mommy. We can't wait to have James at home and lay down with him. Claire and Audrey have carved out a place for him on our bed.
These days we continue to work on James' oral aversion by offering milk in various ways when he displays interest, which is typically close to feeding time. Today, I offered him milk on a little baby spoon and it was met with great interest. No gagging, but instead, constant looks by James which meant "more Momma". It's very encouraging to see him making small forward steps accepting milk into his mouth. Every few days, I am still thinking about whether or not a G-tube is still a possibility for James. The next few months will dictate the outcome and our hope is that James will see us all eating and enjoying meals together as a family and decide that he too wants to be a part of the food party. For now, we'll go slow, and let him take the lead.
April 12 - Day 223
Today was a fairly quite day in the NICU, but a busy day for our family. We took full advantage of the sunshine and had James outside for his longest walk yet. I headed one block away from the hospital to take in cherry blossoms and lovely gardens and it was really just to test my own confidence.
James is doing really well these days and he is just such a happy little boy. Seeing as it was our last full weekend in the NICU, we decided to enjoy a bbq with our friends, and instead of rushing home, or one of us leaving early to head up to the hospital, we enjoyed a family bike ride home at dusk.
April 11 - Day 222 - Oxygen Delivery
Today Joanne and I had to rush home just before noon because the company that delivers oxygen tanks was coming over to deliver equipment. We are set up now with a whole bunch of tanks at home. Hopefully James doesn't need to be on oxygen for very long and we can start weaning him off of it relatively soon. He is on very very little. If we have extra tanks, maybe Claire and Audrey could go scuba diving in false creek.
James was with one of his great primary nurses today. Joanne went up to the hospital at dinner time and did the evening routine, including bath. James is in great form these days and continues to sleep through the night with the CPAP on. He tipped the scales tonight at just over 5500 grams which is approximately 12 pounds, 2 ounces. This week will hopefully be James' last week in the hospital. This could be James last weekend in the hospital assuming he come home (or we get day passes) for next weekend.
April 10 - Day 221 - Sean's Back and James' Back
It has been a long time since I have written on the blog. Joanne has done all the writing as of late. Work has been very busy working on a big case and also getting our home ready for James' homecoming has been a tonne of work. We also had back to back visitors last weekend and somebody has to make the Pavlova.
I have now finished clearing out our home office (on the main floor of our townhouse) and set up James' room and it looks great. I'll try to post some pics of it soon. We moved the home office up on the third floor which is also very cool. Audrey saved the day finding the hardware from the crib (Harders take note).
James was in good form today as usual. They made one further change bringing his feeds down to 1 hour duration, still every 4 hours. That is absolutely wonderful news. Just a few weeks ago he was feeding over 2 hours, every 3 hours. As much as I wanted them to wean James off his breathing support (which is still low flow during the day, CPAP at night), I'm very glad we made changing the feeding schedule a top priority. If James came home feeding for 2 hours every 3 hours we would have gone nuts. Now there is a 3 hour break inbetween eating. I should probably try to do the same thing when James is home. Unfortunately, costco sells hummus by the kilogram and it is just too hard to go 3 hours without dipping in.
There was one scare this week that I don't think Joanne mentioned. James has these two little dimples on his lower back around where his "love handles" will someday be. It can be an indicator of spinal issues, including serious conditions (or it can be totally normal). They did a spinal survey of James and we had to wait until the next day for the results. It was another one of those moments like in October waiting for news that could change the course of James and our lives. In typical James fashion, everything was fine. He has a slightly longer spinal cord, nothing to worry about. What we have been through with James....
Before I sign off I wanted to rant a little about the parents info session I attended today for a brand new school being built in our catchment downtown. Claire is at the most amazing school that we hope both James and Audrey will attend, so it is of little relevance to James, but I was curious about this new school and wanted to share this experience. In typical Vancouver fashion, this school, which should have been built five or ten years ago (along with all the condos, daycares, parks and bikelanes), once it is built will be too small to meet the demands of the families with young kids in the area. They can't build higher than 4 storeys because the yuppies with condos next door on the 5th floor might have their view of the 5th floor condo across the street obstructed. They were telling us this in the library of the current school where only 1 out of 2 families in the catchment area were able to get a spot. Also, the new school, called "international village", won't offer French immersion despite the fact that there were 50 people on the waitinglist for French immersion in the current school and despite this being a bilingual country. But it gets better, it will have a rooftop vegetable garden because as we all know, grade 4's love to prune kale and swiss chard during recess in the pouring rain in January. The neighbouring yuppies won't have to listen to kids running around playing tag or kicking balls, they'll be quietly working on the organic veggies! And on the plans there are these things that look like classrooms that are called "learning studios". No doubt that multiplication tables will be replaced with mortgage amortization tables in the curriculum. And instead of spelling B's there will be smart phone text-offs. This is what you have to look forward to James!
April 9 - Day 220
Today was a great day! We have a target discharge date - April 24, 2014. Wow! One week shy of eight months in the NICU. This is becoming so real and we couldn't be happier. Between now and then there is alot of work to be done, not just by our family, but by the numerous staff working towards us bringing James home.
Today we also found out more good news. James was presented at the Home Care nursing rounds, and we have been approved for the weekly maximum of nursing hours. This is amazing. We have alot left to find out, and we have many questions too, and we know that in the coming days and weeks we'll have our answers.
We are at the point now that we are going to stop making changes to James' feeding and oxygen use. After tomorrow, once we have weaned his feed down to one hour duration, we will stop there. If at home James tolerates the hour on the pump, we can consider trying to change the rate. But honestly, we are just so happy that James has 3 hours of rest time in between feeds to work on play and movement that we won't be rushing to change the rate.
James spent the day with me and this morning we went for a walk around the block. It was beautiful outside, and James fell asleep in the stroller. He likes the walks and this great weather makes for an easy adventure. On my way through the hospital, I was fortunate to see an old NICU family and one of their twins. This was a family located across from us during those tenuous days in September and October. They have had their share of worry and stress, so to see them today, carrying the babe with such ease was a beautiful thing.
Tonight, Sean was up at the NICU and the boys got down onto the mats for some floor time. At the pace Sean has been keeping these days, James is lucky he wasn't serenaded by the sounds of his dear old dad snoring away!
CTV News was filming again in the NICU today. They have been there a few times in the past weeks as they are doing a week-long feature on the NICU before Mother's Day. James and I will not be making cameo appearances.
April 8 - Day 219
There are alot of comings and goings from James' room these days, talking about discharge planning, teaching, and the like. Sean and I are very thankful for all of the effort that the NICU team is putting forth to get us home. Going home with CPAP, low flow oxygen and a feeding tube requires alot of planning, support, and supplies. I have great confidence that we will be well prepared for our new normal at home thanks to the amazing work happening for us today and everyday. We are working at getting our home ready for James, and planning for the day to day with the girls. James and I will be in hibernation at home for the first while as he adjusts to life at home, so this means that I won't be ferrying the girls to and from school, among other things. It will be a busy, endlessly rewarding time for our family.
Next week, James will get his first and only RSV shot for this season in preparation for coming home. April signifies the end of RSV season, so he'll get just one now and hopefully he'll qualify for the shot again next RSV season as an added protection.
April 7 - Day 218
Today we lowered the rate on James' ng feed to 75 minutes. This is forward progress for James, and in the absence of vomiting, we are able to do this. This is also a benefit for going home. While we will have a small feeding pump that can easily be transported for walks, drives, etc, it is nice to know that James is developing hunger and we aren't tied to the pump.
James had a happy day today.
April 6 - Day 217 One Weekend Closer
By the time I arrived to the NICU at 9am, James had a new NG tube and was happily babbling away. His sounds were met with relief. I felt so horrible about how sad he was yesterday, so to see and hear him back to himself was great.
Today, James had a great day. He was playful, vocal, and active. My aunt and I took him out for a walk around the perimeter of the hospital. With her, I felt increasing confidence to go a little further away from the doors. Yes, it sounds silly, but after this long in the NICU, it is anxiety-inducing. Nonetheless, our walk was perfect. James enjoyed the fresh air, sunshine and sounds of life outside.
He also tried out a sitter chair for the first time. Until now, we've only placed him in the tumble form chair, which is very supportive, but not so soft. The sitter chair had enough of a bounce to surprise him when he had his legs moving about, and enough softness for his body to settle in to.
This weekend brings us one weekend closer to bringing James home. It's so exciting! We have a lot to do in preparation. Until now, we haven't felt confident to ready the house. Now, it's crunch time.
April 5 - Day 216
This morning started off as a lazy Saturday for James again. He is a boy who loves to have big sleeps. His uneventful morning was interrupted by his desire to yank his oxygen tubing off his face. This led to him having the old stickers removed with new ones added. Twice unfortunately, as the first were on upside down. All of this sticker-removal irritates James sensitive baby skin, so was not a happy camper. His face was very red, and he made sure we all knew not to go near it. The downfall of him being irritated with anything near his face, was that he wanted his tubes gone. So he pulled out his NG while he was in his room alone. This meant that he not only needed an NG insertion but new stickers to his face. Poor James. I inserted his NG, and thankfully this time it made it into the stomach on the first pass. But we attempted to use a thicker tube this time because James is a bigger boy now. This was a very bad decision. James spent the rest of the day extremely upset, which led to the rest of us feeling upset too. He wanted nothing to do with anything. By nightfall, we realized the problem. Not only did his face hurt, so did his nose and probably his throat thanks to the bigger tube. So we decided it would be best to change the tube once James wakes tomorrow morning.
His bath lasted 2.2 seconds tonight because of his sadness. The only positive from today was that James is back gaining weight steadily. Hopefully tomorrow brings smiles, comfort, and happiness back to our boy.
April 4 - Day 215
Today James had the opportunity to meet his Great Aunt Prue from New Zealand. We are so lucky to have her here for the weekend to visit with all of us, and to meet James. She had some one on one time while I was off at a school function of Claire's, and she saw us running around in our usual busy ways. James was enamoured by her. They had many cuddles, enjoyed stories, and there is a whole weekend of that waiting for him.
James was seen by the Urology team today to discuss surgical options in the future for a relatively small issue that he was born with. They had not been consulted until today, and they were swift in coming to see James which is great. My hope is to have any consults that are outstanding for James completed while he is still an inpatient. As anyone in healthcare knows, consults happen fast while in hospital, and can take a long time to happen when you are waiting at home. Once discharged, James will be followed up by numerous services and we will be going to appointments frequently. My goal is to limit our time in clinics, offices, and hospital where germs are lurking about. So I kindly suggested to Urology if they have any further suggestions, tests or people that may need to see James to do so in the next two weeks if possible. From our brief encounter, it sounds like James will require two surgical procedures with urology spaced six weeks apart. Not easy news to digest. The truth is, until James goes under anesthesia and successfully comes out of surgery, we'll be nervous about consenting to him going in for any surgeries in the first place.
April 3 - Day 214
James had a much more settled day today. The formula takes some adjustment and he's slowly getting used to the mix. His feeds have been ramped up to one hour and a half, in an effort to shorten the duration that he'll be feeding once at home. We received the feeding pump and mini-backpack that we will take home. Over the next few weeks we will start using this feeding pump so that we are comfortable with it and ready to troubleshoot any potential issues.
We found out today that James was not presented at the Home Nursing rounds yesterday as we had hoped he would be. This means he will likely be presented next Wednesday. Once he is presented, we will find out that same day how many home care nursing hours we'll be allotted. From there, the ball will be rolling in training his home care nurses and we will be able to anticipate the daily schedule with caregivers in our home.
April 2 - Day 213
Today was not a very settled day for James. He was gassy, tired, and just unsettled. We are in the process of transitioning him back to full formula feeds in an effort to maintain steady weight gain. Prior to discharge, there comes a point when we have to stop making changes and settle into a place where feeds and oxygen are left alone. Once home, after James shows us he is up for the challenge, we can make changes again. But no one wants to send a baby home from the NICU during a time of uncertainty, so we'll attempt to achieve some goals, and then accept where we are at, and go home. So the next few days/week, we will attempt to get James down to feeds over 1.5 hours every 4 hours, attempt a little oxygen weaning (if not complete removal), and then stop.
This week the focus has been on feeds. If by the end of the week James hasn't had steady weight gain, we will increase his formula to a higher caloric content. At this point, I'll do anything to keep our boy on the growth curve. Sure, I'd love him to be exclusively on breastmilk, but that is just not to be right now.
In addition to feeds, the focus has been on teaching/learning all about managing James' NG tube. Today, I inserted his NG for the first time. To say it didn't go great is putting it mildly. I managed to put the tube in his lungs. James quickly let me know I was in the wrong spot. How far in, I'll never know, but I sure upset my little boy in the process. Cue the heartbreak. After a few more attempts, with the tube finally in place, I muttered something like, "I don't want to be his nurse, I want to be his mommy", as I fought back the urge to break down. The ONLY advantage of my missteps this afternoon was that I had to troublshoot quite a few things, all in the safety-net of the NICU. One of our wonderful primaries was there to help through it all, and had we been at home doing this, I would have probably passed out or called 911! Let's hope all future insertions at home go much more smoothly. James appears to be no worse for wear, but it certainly took him a while to settle.
This entire week has me experiencing a great degree of separation anxiety as I leave James. It is becoming very difficult to leave him every day, and in turn, I'm not really wanting to leave him. I'm spending a lot of time in the NICU and I just want to bring him home. I can't wait for us to be home together - our little party of five. It is time.
April 1 - Day 212 - James is 7 months old
Today was a beautiful sunny day and Joanne and James ventured out to check out the cherry blossoms. Joanne says it was a bit breezy so they didn't stay long but it was good practice for leaving the security of the NICU.
We were referred to a pediatrician today too. Joanne also says this is exciting and she comes highly recommended by my NICU friend Lindsay. She will come by the NICU to meet James and review his chart in the coming days/weeks.
James hung out with Daddy in the evening and had a bath. Afterwards the CPAP goes on (which he hates) but then seconds later he dozes off. He generally sleeps soundly through the night, which is wonderful.
But it wasn't all blue skies and cherry blossoms today at the NICU. On one side of James a baby sadly passed away after weeks of 100% O2 and maximum ventilator settings. On the other side of James a baby has taken a turn for the worse and needed to be intubated. There is not a day that goes by that we don't count our blessings. April is the month we expect to bring James home.
March 31 - Day 211
Today was a good day for James. I arrived to find him having his weekly physiotherapy session. The physio is so happy with his development and how quickly he's changing and gaining strength. Every week James is making great strides. With the omeprazole controlling his reflux, we are able to play with James and put him to work without risking him vomiting all over everything. It's nice to be able to take advantage of his off-feed times again.
The team shortened his feed time to 2 hours, every 4 hours. This gives James the chance to rest his tummy and play for 2 whole hours - something he's never had the luxury of until now. It also allows James the opportunity to develop hunger. So the last few days we've seen James really interested in oral stimulation and working on accepting milk into his mouth. This is the reason that for the first time, James was super duper keen on eating at 9pm tonight and he took milk for 15 minutes orally. Not breastfeeding, but close to it.
James and took great advantage of the sunshine and headed outside for his first outdoor walk. The fresh air and movement lulled him to sleep quickly, and while I didn't stray far from the many entrances along the perimeter of the hospital, it was amazing to be outside with him. One step closer to home. Tomorrow, he'll get his first glimpse of the beautiful cherry blossom trees (if I get up the confidence to walk a little farther from the front doors!).
March 30 - Day 210
James had a great day today. He spent the morning and early afternoon with his big sister Claire. We went for a walk and explored the unit that we stayed on when Claire was born, and Claire had a short cuddle, then finished off her visit with another violin concert. James loves to hear Claire play.
James also wore big boy clothes for the first time today. Hiked-up khakis (as seen on the left), with a plaid shirt and a little pair of shoes. So ridiculously cute. He'll grow into it all eventually.
James finished off the day with a bath and cuddle by Mommy. His weight is finally up, but he's still shy of 5.2 kgs. Over the last few weeks he has hovered around the same weight without really packing it on. So this week we expect his weight to be watched and if little growth happens, he may have to say goodbye to breastmilk for a while. The great news is that the vomiting that was plaguing James seems to have stopped. He's able to tolerate coughing and gagging without inducing vomiting so this is forward progress.
March 29 - Day 209
Right on cue, James knew it was Saturday and slept in til 9:30. He spent the rest of the morning with Dad and Claire nd Mommy are coming in this afternoon. James is in top form these days. He is such a happy, content little guy. We continue to be surrounded by kids who are not as fortunate as James - kids going through those bad days that we know oh so well. It's hard when you are in those times to look across the hall at families gleefully playing with their babies, so we always try to be as discreet as possible in the NICU.
March 28 - Day 208
Today was another great day for James despite the fact that he has lost weight again. He is over the 11 pound mark but has been hovering there for a while. We can't be sure if it is due to feeding or due to his breathing or something else. James is always under the microscope and everyone is always trying to figure out why these slight changes happen. Who knows why our weight fluctuates from day to day, why our platelet count fluctuates from day to day or why it rains somedays and not others. Rest assured, in the NICU, everyone always has a theory, myself included.
Today, James was assessed by someone who will recommend or decide what kind of home-care nursing James will be entitled to. Another step towards going home. It sounded like we may get the maximum, which might mean having up to 6 or 8 hours a day. What is interesting, like a lot of things to do with the government, the reason you are entitled to home-care is often not related to where you have the biggest need. What I mean by that is that it is James' breathing support that entitles us to the home care support. If James had no breathing support, but was tube-fed (as hes is now), we might get nothing in terms of home care nursing support. But the feeding schedule is going to be brutal. James currently tube feeds for 2 hours every three hours. Meaning he is only NOT feeding for one hour out of every 3 hours. We have to be awake while he is being fed at home. So that would mean one of us (let's be honest, Joanne :)) could only sleep one hour every three hours during the night. Without support, after 48 hours she would crash. So maybe the fact that James is on a CPAP for the night and low flow O2 during the day, is a huge blessing in disguise. Over the coming weeks and months we hope to get James feeding every 4 hours and over a shorter duration. Less drip, more chugging, so to speak.
With the idea of home support we also need to rethink having James' crib in our bedroom. Apparently, a home care nurse may not want to spend the night in the same room with a 200 pound, snoring, hairy guy. Possibly an occupational hazard. So we are talking about making the office on the first floor James room for the first few months.
March 27 - Day 207
We have moved next door to the end unit, which means James is living it up in luxury with a window and a big crib. It is one of only two spots in the NICU that has a window. Joanne was kept out of the NICU for the morning awaiting the blood results to confirm she still has the chicken pox antibodies in her blood. I was able to get up to see James in the morning before going into work. James had a wonderful nurse today which is so reassuring during those times when either Joanne or I are not here.
We are still hoping James may be able to come home by Easter or shortly after. Each day we are working towards that. James has been weaned off a lot of his medication and puffers and his is doing just fine without all the drugs, which is great.
March 26 - Day 206
James had such a fantastic day today. He was awake and playful, and we've discovered that he has a real fancy for breastmilk dropped onto his lips. This is in no way a sustainable way to get all of his milk into him, but wow, it was great to see. He would turn towards me when he wanted more, and then turn away as he swallowed. It was priceless. There was no gagging or discomfort and that is huge forward progress. He did this on three separate occasions today so I was excited to go up again to try for his bedtime feed at 9pm. But that was not to be.
This afternoon, when picking up Claire from school, it's possible that we were exposed to chicken pox. So I talked to one of the charge nurses and docs this evening, and out of an abundance of caution, they asked me to leave the NICU. I also went to the assessment room to get the Varicella titre bloodwork done to confirm my immunity. I had chicken pox when I was little, AND, our little friend may not even have chicken pox, but in light of what James has been through, and continues to go through, along with all of the other babies in the NICU, the risk is too great. So I am not able to go back to the NICU until the bloodwork comes back clear. I left without kissing, bathing, or feeding James lastnight - cue the heartache. But his lovely nurse took my place and bathed him up, weighed him and tucked him in for a long night of sleep.
His weight is down a substantial amount since restarting the breastmilk so it's fair to assume that James will be restarting feeds with a combination of formula and breastmilk. His vomiting has all but stopped on his new medication, Omeprazole, so the GI team feels its ok for them to stop following him for now.
James had an echo this afternoon with great news coming from that. His cardiac function looks normal off the sildenafil, and in general. With a repeat echo on the horizon next week, let's hope the findings are the same!
March 25 - Day 205 - Movin' on Up!
Today saw James finally taken off Morphine. His slow wean was a success, and he received what we hope will be his last dose of morphine ever at 9am. The docs also took James off his Sildenafil for the pulmonary hypertension that seems to be a thing of the past. James never got up to the therapeutic dose, but it was with caution that they slowly weaned that over the last few weeks too. So far, no adverse reaction by his lungs. He will have an Echocardiogram tomorrow while on his low flow oxygen, and then a repeat one next week off oxygen to see what his heart does without sildenafil or oxygen. If all looks good, and James can tolerate being off low flow, this may be the opportunity to removed oxygen prior to discharge. Otherwise, in addition to CPAP at home for overnight, we'll be set up with home oxygen for daytime.
Sean and I met with the respiratory discharge planner this morning to chat about our goals for discharge and the like. It's great to be talking realistically now. The necessary paperwork has been submitted for funding for home supports and equipment needs, so what we need to do now is learn, learn, learn. There will be many things to go over. So in the coming days and weeks, Sean and I will become more independent with James medications, feeding pump, and breathing apparatus.
Today we also tested James out in his carseat for the coveted NICU carseat challenge. As any NICU parent knows, this is a very exciting step in the road to bringing home our little ones. James needed to sit in his carseat for 90 minutes, and maintain his oxygen saturations and heartrate for the duration. After some tears getting used to the seat and straps, James had slept for almost the entire challenge. His sats and heartrate were steady and he passed! If he ends up off oxygen prior to discharge, we'll have to repeat the challenge, but it is worth doing now so we can check one more thing off the list of to-do's.
James moved on over to the penthouse suite in the NICU today too - for the first time in 205 days, James has a room with a window! Beautiful natural light cascades through the window all day long and it is wonderful! There are but two rooms with windows, and we hope to finish off our stay in this one. It is great. It's a little farther away from the nurses station so less noise for James. He is a social little boy though, so he may miss the action. Today he also moved up to a big boy crib. This giant bed is fantastic. One end stays elevated all, while the other can be flat for James to work on his 'hobbies' (as one of our primaries calls his tummy, chair, and play time!).
March 24 - Day 204 - Road Trip
This morning we said a sad goodbye to GG. We spent eight wonderful days with her and by the end of her trip, James was recognizing her and finding great comfort in her. We've called her the baby whisperer for years, and this visit was no different.
After he slept in like it's the weekend, we had an unexpected road trip off to Ophthalmology to get James' eyes checked. So we explored uncharted territory, and hoped that we wouldn't get stuck in the elevator as we headed up to the new clinic (still in the hospital) a short walk away from the NICU. James tolerated the eye exam very well. Now that he's older, the eye exam no longer involves using a speculum to hold his eyelids open wide. It was all done using lights, microscope-like discs, and a little laser. The Ophthalmologist commented that James has great tracking abilities and his eyes are very good considering all he has been through at this early stage of life. His eyes are right where they should be for a four month old. The only area to watch is a mild astigmatism. We will go back for a follow-up in 6 months to see where he is at then. It's possible that one day James will be rocking the dark rimmed glasses just like his daddy to really solidify the resemblance between the two of them.
We've reintroduced breastmilk into this feeds today as well. So over the next few days we'll see how he tolerates that and hopefully he will to the point that formula can be left out. He may need a little bit of powdered formula added to feeds for a calorie boost, but we'll watch his weight to see if that's going to be necessary.
James used his voice to explore sound today, his hands to shake and move toys around his crib, and ended the day with a warm bath by daddy.
Tomorrow we'll take in James' car seat to do the coveted NICU car seat challenge. In addition to the walks, the car seat challenge is another necessary task to complete prior to discharge. With discharge still unknown at this time, these simple steps which are hugely monumental for us, signify that we're closer than we've ever been before and that is exciting!
March 23 - Day 203
It was a packed house in James' room this morning with all of us heading up for a morning visit. Claire cuddled James as he slept in her arms for an hour, while she and Sean played twenty questions. GG, Audrey, and I visited out in the lounge, and then the girls headed off to the beach while the boys had Baby Bjorn and cuddle time.
James had a great day, with very little time spent away from family. It was so nice to get out and about in the city, but we still managed 3 separate visits for James and his GG before she heads home tomorrow.
James is tolerating the change in breathing support well and his face is getting a well-deserved break from the cpap mask during the day. So far, it's been a positive transition. As we get closer to bringing James home, it's important for the team to explore James' limits so we are able to determine what, if any support, he will need.
March 22 - Day 202 Geriatric Baby James
Earlier this week, one of the more senior nurses in the NICU referred to James as a geriatric baby. We have been laughing about this ever since! When you talk about geriatrics, you often think of an elderly aged population. In the NICU, an almost 7 month old baby is of the aged population too! Little James may be only 11 pounds, but he's an oldie! In the past, we've joked with one of the pediatricians in the NICU that one day James will be her Geriatrician as a way of saying thanks for all of the TLC she's shown him since birth.
Another comment that has kept us laughing this week was one made by the fellow in charge of the Complex Team this month. When we were putting James on cpap during naptime and overnight, he said it sounded like a vacation package "Naps and Nights"! It would be the perfect package for both babies and older folk! So there you have it, Geriatrics all around!
Today, Sean and I took James for walk #2. As the weather was less than desirable, we strolled through the quiet post-partum hallways over to ambulatory care. Sean started playing the piano for James, and we learned quickly that James is more of a violin lover than a piano man at this stage of life. A few bottom-lip curls and tears were had, so that was the end of the daddy orchestra. We continued on our merry way, and it was nice for the three of us to have some quiet time in such a public space. James fell into a deep sleep in the stroller while we walked and we wheeled him back to the NICU after an all too brief outing. Taking him for walks is so exciting and such a reward.
James had a full day of family love and this evening ended with cuddles and a bath by GG. He was talking her ear off tonight - such sweet sounds to be heard.
March 21 - Day 201
As many of the faithful blog followers have noticed, I've gotten behind on the blog posts. As much as it only takes a few minutes to write a few lines, it also takes only a minute to unload the dishwasher, put away the laundry, do your taxes, take the recycling down, get the mail, spend time with the girls, cook dinner and hang up on telemarketers. One more thing on the bottomless list of things to do. We've also been high rollers going out two night in a row. So I've been posting them in batches to make life a little easier. But enough about the blog, what about James?
For the second time in 200 days, Joanne took a day off, to spend with Claire who is on spring break and to hit the slopes. It was probably a day when I should have taken off work, but work's busy and days off are precious right now. I'll need them more when James is home. James had the benefit of a volunteer cuddler today, his nurse entertaining him and Mommy was in for his evening bath. They've switched James back to CPAP on at night and off during the day. That is wonderful.
March 20 - Day 200 - Adventure out of the NICU
If you told us when we started that we might be in the NICU for 200 days I wouldn't have believed you. I remember when it was around Day 80 thinking, wow, are we really going to be in the NICU for 100 days? Today we hit 200 days.
A lot of times when we hear about other babies who spend 6 months or more in the NICU there are usually a lot of complicated issues. Surgeries. Disorders. Etc... Not everyone agrees with me when I say this but I really think that James' only real issue is his lungs. Most of his problems have just been the result of having really premature lungs. The timing of James' January 6 para influenza and pulmonary hypertension was nothing short of horrible. He battled so far during 2013 and entered 2014 a new man. To then go back 100 days was just brutal. Now we're back to where we were, but having missed the boat on feeding.
Today was the first day since January 6 that James left the NICU. He left with no specific destination, we took James for a walk in the stroller. Joanne and I were trained on using portable oxygen tanks (not that James really needs oxygen, but I won't go there) and we pushed him down the hall, outside (James first time outdoors) and upstairs of children's hospital where his sisters and grandmother were anxiously awaiting. It was really wonderful and of course, James was in top form. It was busy in the rest of the hospital and a huge change of pace from James' usual daily routine. His sisters got to push him around in the stroller and we took a bunch of photos. We can now take James for walks as long as both of us are there. Hooking up the oxygen tanks is about the same as turning on the BBQ. It feels like James homecoming is getting closer. Still talking about sometime in April.
March 19 - Day 199
James had a great day today with his mom, his big sister Claire and grandma GG. Short post today!
March 18 - Day 198
Today James was demoted back to putting a limit on his CPAP time. 5 hours maximum at one time. There is no real reason other than the fear that James is going to crash and people were concerned that he spent 12 hours off CPAP yesterday. This isn't a big deal in the grand scheme of things but it is annoying to have to put James on CPAP in the middle of the day, when he is much happier off. Look at how happy he is when he doesn't have a mask on his face! James weighed in at 5150 grams, had an evening bath and passed out for the night.
The GI docs came back to chat with Joanne and for now we'll watch James. No one wants to subject him to unnecessary procedures, so we'll give him a few days to settle into new medications and the formula he's getting before we make any conclusions that need further investigation. For the first time in months, we have a full bin of 70 bottles of milk back in the freezer. While James is getting exclusive formula feeds, Joanne can stockpile and at the same time, buy some leeway on what has been a very strict pumping schedule these last few weeks.
March 17 - Day 197 - St. Patrick's Day
James was treated to a violin performance and visit from GG today. He had a wonderful day and the best part was that they decided he could stay off CPAP for the day, and go on at night. They also reduced his feed by about 10mLs to see if that will help control the vomiting. The team had the GI specalists weigh in on James and what is looking like a substantial case of reflux.
Joanne and I got to go up together in the evening - the first time in a while we did that. James had a really good attempt at breastfeeding, but the poor little guy just doesn't know how. He does it all, except latch.
March 16 - Day 196 - Welcome GG!
Today James' Grandma (GG) arrived from London. He had a big smile and a big vomit to welcome her. James had a great day despite the fact that he is continuing to throw up regularly. He is not liking his CPAP very much either and we're still supposed to put him on it when he naps during the day. But when he dozes off for a nap, guess what happens when you then strap a hat and mask on and send mach force winds into his face? As you might expect he starts crying and it kills the nap. Tomorrow we will ask if he can stay off CPAP for the whole day.
March 15 - Day 195
Saturdays in the NICU are my favourite days. James slept in again today as usual. James has had many of his primary nurses over the past week which is great. James is still barfing a bit on the new formula, but he is happy. He seems to have Audrey's mild temperment which is a blessing. If every baby was as chilled out as Audrey was, there would be a population spike. That James is so content after all he has been through is nothing short of amazing.
March 14 - Day 194
Today the vomiting continued so they decided to try an experiment. James is going to be fed a new kind of formula for the weekend. No breastmilk for 48 hours and see what happens. One positive aspect of this is that we are able to stockpile the freezer again with milk. We have been living bottle to bottle for the past few weeks with no reserve in the freezer. We have to get Joanne's pumped milk up to the NICU by 9am or there is nothing.
Joanne bumped into the surgeon today who was in the OR on January 6 when James' hernia repair surgery went badly. She said she wasn't keen on putting in a G-tube either way. Any way you slice it, James is a surgery risk and the safer option, from her perspective, would be to send him home with an NG tube (the one he has currently down his nose).
In the breathing department, they upped James' max time off CPAP up to 4 hours. Basically, James is back to CPAP for nights and naps only - which is where we were a week ago until they set a 3hr rule..He is still on low flow when he is off, which seems a little overkill right now as James can do fine without it, but it is not a big deal either way. I'd like to see James on less support because I think he really does not need it and I think the breathing support is partly to blame for the feeding problems.. This has been a bone of contention for me over the past several weeks. But I'm now coming to accept I'm not in control of James - they are. As much as they want parent involvement and input, at the end of the day, they are going to go at whatever pace they want. Parents have to advocate for their kid, but t is very hard having little to no control over your child. It was one thing when he was a neonate, but now that he is 6 months old, you would think there would be a little more parental control. But there isn't. As long as he lives under their roof, he is in their control. That's been a tough pill for me to swallow, but a lesson I should have learned by now, and need to remember if I am going to stay sane..
March 13 - Day 193
James is continuing to throw up a lot. It can come at anytime. It is a bit of a mystery. It doesn't seem to bother him 5 seconds after he's finished. But it has everyone wondering why. James weighed in last night at 5020 grams or just over 11 lbs so it doesn't seem to be affecting his growth too much, at least for now.
Joanne and I had to take a safe airway course today which they ask of parents taking kids home from the NICU. Joanne, being a nurse, has up to date CPR and I used to be a lifeguard and teach lifeguarding courses (although that was 20 years ago) so it was mostly a refresher in doing the heimlich maneuver, baby style, should James decide to choke on a carrot stick someday. The Occupational Therapists also tried James on a bottle today and he showed interest, but not to the point of actually sucking on the bottle. James continues to do well in the breathing department but despite that, they wrote an order limiting his time off CPAP to a maximum of 3 hours.
March 12 - Day 192
Today was a mixed day, mostly good. The best part of the day was in the evening when James let out a big giggle for Joanne. That was the first time she saw James giggle. James also had a follow up with orthopedics to look at his arm that was broken months ago and they were happy and said it has healed nicely. On the other hand James' heart rate was sitting lower today. Everyone comments that he's a big boy now, so a resting heartrate that is in the 80s/90s is ok. But it's a change from his usual rate so we'll keep watch. He had a few more vomits too.
March 11 - Day 191 - Happy Day
Last night James threw up 5 times and people were worried he was getting sick. They ran the usual blood work which all came back clear. Everything looked good. As the morning wore on though, James was back to his old self. He had a great day, was alert, happy and enjoyed playing with some toys and smiling at his Mommy. Tomorrow we have a meeting with the discharge planning people to start the process of getting James to come home. Hopefully around Easter.
March 10 - Day 190 - Sleepy Monday
James was really sleepy today. He basically slept the whole day. We still find some people in the NICU think James needs to go slower in terms of breathing (ie the opposite opinion to mine). They fear James is spending too much time off CPAP and worry he is going to crash. Today, some of those people were thinking they were right. It's hard to say whether James sleepy day is because he is being pushed too hard or whether he just happened to be sleepy today. Maybe he stayed up til 3am watching episode of the Good Wife on Netflix. Oh wait, no, that was his Dad.
March 9 - Day 189
James had another good today, spent with his Mom. He is still throwing up quite a bit, but there doesn't seem to be anything the matter. They stuff James full of milk every 3 hours trying to give him as many calories as possible to help him grow. It might just be too much for his little tummy. He might also just be the kind of kid who throws up a lot. He is good on all other fronts.
March 8 - Day 188
Somehow James seems to know when it is Saturday... he always sleeps in on Saturday mornings. After a good night's sleep he enjoyed his time on "low flow", pictured on the left. He is a much happier boy off the CPAP. The new plan with James getting more time off CPAP is working out well. James is now basiclly off CPAP for most of the day, and on CPAP at night.
March 7 - Day 187 - Discharge Planning
Today was a good day for James and a big day for Joanne and me. We had another big meeting - this one was really big - and it included the people that deal with 'discharge planning', meaning sending you home. Most people assume, probably correctly, that James will be coming home on support. We've had unofficial conversations about this over the past weeks, but this was our first official conversation about going home. There are a lot of things up in the air, so it's not like we were able to make any definite plans, but it was a really good opportunity for us to ask questions and get a sense of what we may be dealing with.
As you can imagine, going home on support is a little more complicated than going home without support. If we bring James home on breathing support, we will need the machines as well as home-care nurse/respiratory therapists. That involves applying to the provincial government for MSP funding (for Ontario people, that's like OHIP) which takes time. If we are going to get a G-tube for feeding James then surgical consults, etc.. need to be arranged. It sounds like we are best to start getting things in motion now and that we might be looking at coming home around Easter (ie mid to late April). Subject to things going sideways for better or worse of course.
It is possible that by Easter James will totally be off breathing support. But it is possible that he won't be. We may as well start getting the ball rolling now as if he would be coming home with support, and it is easy to cancel it at the last minute, if James no longer needs it. Not the other way around. It is also possible that James will revive his breastfeeding skills from December in the coming weeks, in which case maybe we won't need the G-tube. There has been a little bit of progress on the feeding front recently, but James is a long way off from full on breastfeeding.
So the meeting was one of mixed feelings, but it was mostly encouraging and reassuring. On the one hand, it is exciting to be talking seriously about bringing James home. On the other hand, the reality of coming home with some support is sinking in. It's not the end of the world, but it is just a tiny bit more complicated than walking out of the hospital with Claire or Audrey.
James spent a lot of time off CPAP today on low flow and his saturations were amazing. He had an evening bath and zonked out.
March 6 - Day 186
Today saw a lot of barfing, but it was otherwise a good day for James. With the throwing up and the off colour poops, they decided to run the standard sort of tests to see if James was brewing something. They even ran the para influenza test. Everything came back negative which is great.
Joanne was home with the girls today and she called up for rounds and asked that James have a day off - with no changes. But they did make one change - they switched his CPAP pressure from 6 back to 8. What?! In the NICU world, that is known as moving backwards - it is giving more support. It took them over a month (ie February) to change James down from an 8 to a 6 and in one day, when we weren't there, they switched him back to 8. And James was doing just fine on the 6, so what gives? I called the NICU from work and asked to speak to the doctor who was kind enough to take the time to explain what they were doing. Basically, the respirology people recommended giving James maximum support when he is on CPAP in the hopes that it will allow him to have more time off. It seems counter-intuitive to me - anytime you are giving more support, surely the body adjusts to that and it just takes longer to wean off the support (which is the ultimate goal). I've always thought the less support the better. But this is what they want to do and so we'll trust the experts here - there's really no choice - they are running the show. I'll get over it.
March 5 - Day 185
Today was a day of moving forward for James. In the breathing department, they decided to put James on "low flow" when he is awake and on the CPAP when he is asleep. Low flow is pretty non invasive, just these small nasal prongs that can feed in extra oxygen to keep James saturations high. It doesn't send mach force air like the CPAP or the high flow that James was on back in December. With the little whiff of oxygen, James saturations were quite high which kept everyone happy. Joanne also busted out a lot of the toys and play centre kind of stuff for James.
It wasn't all rosy though, James is continuing to throw up, mostly caused by gagging. His poops are also a little green. Too much information? James is doing fine.
March 4 - Day 184 - Probably Time to get a G-Tube and Go Home
The question everyone always asks me is, "do you know when James is going to come home?" The answer is always the same: he can come home when he can breathe on his own and feed on his own. Well, I guess there is another scenario: you can go home, with support, when you have overstayed your welcome and really, whatever you are doing in the hospital room, you could probably do at home. We seem to have reached the point where now we are talking seriously about bringing James home on support. We are still weeks away from coming home, but that is what we see happening and we are having a meeting Friday to likely plan for how to get there.
Attempts at breast or bottle feeding have not gone very well lately and while we're not throwing in the towel completely, the reality of the situation is that James has probably missed the boat on oral feeding. After six months of "direct delivery" feeding (ie milk is pumped right into his stomach via a tube) he has not had much of an opportunity to learn to feed. I would say that James' lungs and the para influenza that James caught on January 6 is to blame for this unfortunate situation. Because of all the breathing support that James needed, he didn't start feeding until December. Feeding was going well in December but the setback in January with para influenza was a big one. But for that, I suspect we would not be in this unfortunate situation.
I fully expect James will learn to eat solid foods from a spoon, but we are months away from being able to introduce solid foods and so for the forseeable future, it is fair to say that more than 90 to 100% of his nutrition is going to be pumped right into his stomach, as it has been for the past 184 days. Accepting that, the best thing to do is to have a "G-tube" put in. This is a tube that will be surgically placed directly into his stomach with the entry point also in his stomach. We can work on oral feeding, but we will pump his milk into his stomach via the G-tube. Currently, James has an "NG tube" (the 'N' stands for nasal) which is the tube you see taped to his face in the recent photos. The G-tube will be right into his stomach and is a better option for coming home for a variety of reasons. For one, he won't have anything on his face, in his nose or down his esophagus. Second, and more importantly, the risk of "aspiration" (ie NG tube getting pulled up too high and milk going into lungs) goes away with a G tube. Third, it seems to be relatively low risk and leaves little or no long-term effects when it comes out. But I don't know everything about the G-tube so we have more to learn. We also need to find out if James can get a G-tube without having to go under a general anesthetic during surgery, for fear we go back to January 6 and a pulmonary hypertension episode trying to put it in.
James breathing is going well and so it is possible he may ditch the CPAP in the coming weeks before we come home, but it is also possible that he might come home with a CPAP machine, for overnight or whatever, if he needs to. James breathing has progressed a long way and he does fine off the CPAP, so right now, the best case scenario seems to be that James comes home with a G-tube, but no CPAP.
All of this is quite disappointing, but in the grand scheme of things, we hope that a year from now he will be breathing and eating just like any other kid and his G-tube, if he gets one, will be a thing of the past.
March 3 - Day 183 - Complex Care Team
James is now under the care of a specialized "complex care team" in the NICU and I think this is a good thing. This team will deal with James exclusively. They did rounds today at 9am and dropped his CPAP pressure from a 7 to a 6. They seem eager to move James forward and this is music to my ears. James did well with the change in breathing support. Breastfeeding attempts continue to be a bust.
March 2 - Day 182
James had a good day today. He spent the morning with his mom smiling and enjoying his time off the mask. Feeding hasn't gone all that well in the past few days.
James had an afternoon visit from Claire who gave him a cuddle, a hand puppet show and a violin concerto.
James' nose was looking a little better today. His chest x-ray also looks good.
While I was going into the NICU today there was a little 2 year old kid running around at reception. He was a past NICU graduate back for a visit to show all the nurses who worked with him what a big boy he'd become. I overheard the Dad say they were in the NICU for 6 months and that he was born at 1 lbs, 4oz. Sound familiar? It was nice to see the happy little guy running around. I have no doubt that James is going to be like that in two years and he will overcome these breathing and feeding issues, but seeing a kid like that helps get through the long haul.
March 1 - Day 181
Today was a sleepy Saturday. James tends to sleep in on the weekends and Saturday mornings are usually quiet, and I get a chance to relax next to James and read the paper.
I asked on rounds to increase James' time off the mask. It's been 10 days since there was any real progress on the breathing front. The time off is great and I was lobbying for more of it. They wanted to run a gas first (he hasn't had a gas in 3 weeks) and they also wanted to do a chest x-ray. I was surprised that making a small change to move forward after 10 days of 'slow and steady' required all this stuff, but so be it. His gas was excellent, no surprise there.
When James was off his mask later in the day, his nose was in really rough shape, like he was developing a pressure sore. Poor James. Hopefully it doesn't get worse and that he can get off breathing support sooner rather than later.
February 28 - Day 180
Today was another day where James seemed sad at times. He would cry very hard for no obvious reason, and it made us sad too. He had a few substantial vomiting episodes and the doctors wonder if maybe he has a GI bug. This could be the reason for the vomiting, lots of very full diapers, and no success with oral feeding. So we'll watch him and hope that he doesn't get dehydrated, or worse, that there is something else going on.
Tonight, Sean is holding James, and we're both wishing that he was here and I was there. For the first time all day, James is looking to be fed by his Mommy and I'm at home devouring chocolate chips while Sean is trying to fill a void for James that is impossible. A little bit of soother-time and some milk from a syringe doesn't quite compare. The tricky part about trying to reintroduce James to breastfeeding is that we can't predict when he's going to be interested.
Tomorrow marks six calendar months since James was born. It's so hard to believe that James was born so long ago, and we still have no idea when he will finally be 'ready' for discharge. Today one of the physicians remarked that she hoped James will be home by Easter. I joked that I would eat as many Mini Eggs as humanly possible to make my milk extra delicious as a reward for James if that's the case! Sean and I have had many dates come and go when we thought that James would be home. When we were waiting for his early arrival, most docs told us to expect him to be in hospital until his due date. After a very rocky September and October, we bumped it back to Christmas. Then after starting to breastfeed around Christmas, we thought Valentine's Day could be possible. Then James went to the OR and we all know how that turned out.
It's hard to know what is realistic after everything that James has been through. But looking forward, It is possible that we will be planning for James to be coming home around Easter time. Our goal is to get James feeding orally and breathing on his own before leaving the NICU. These two lofty goals may or may not be achieved, in which case we'll be looking at bringing James and some essential equipment home together.
February 27 - Day 179
James seemed to be feeling a little on the sad side of life today. He cried more than usual and only settled once he was in our arms. This meant that I had many cuddles with him, as did his nurse! It could mean that he's feeling the effects of the sedation weans, that he's missing those sedatives, or that he is just like all babies and needs a good cry every so often!
I arrived later than usual this morning to find James crying hard as the techs were just finishing up the abdominal ultrasound and was happy to learn that the ultrasound was clear with no evidence of pyloric stenosis! Great news! The last thing James needs is surgery, so we were very happy with this report. With pyloric stenosis ruled out, we decided during rounds to give James formula only if my milk is not available. Hoping I can keep up day to day with this new plan and that this is the solution to bring an end to James' projectile vomiting. As of 11pm in Vancouver, James has not yet vomited today so that is good! His weight continues to go up - another good sign - and he averages a gain of 16 grams per day. Staying true to his own growth curve.
Last night, James' NG feeding tube managed to come out almost completely. When his nurse went to administer a med this morning it would not flush, and he discovered that the tube was out of it's usual depth. So unsure of how long James had this nearly out, we'll watch for any signs of aspiration pneumonia over the new day or two.
One change on the horizon is that James is also going to have his care overseen by a different team in the NICU. They are called the Complex Care Team and they are typically in charge of long-stay babies (like James) and/or babies with complex medical issues requiring additional resources for discharge planning and supports for home. In some ways this team will offer James more consistency in his care because there is a charge nurse, physician, respiratory therapist and other allied health members who only work on this team. They are all NICU staff we have met and each day it will be the same group working towards the goal of us bringing James home.
Oral feeding wasn't as promising today as days previous, but we'll keep on trying and hope tomorrow moves us forward. James smile, on the other hand, showed exceptional promise that better days await.
February 26 - Day 178 - Keep On Rockin'
I arrived nice and early this morning to find James sporting some cute yellow ear phones. This morning his nurse found them and stuck them on his head to help block out some of the construction noise going on outside of his room. They worked great. I realized how well they worked while I was holding James. He didn't have them on after our first feeding attempt, and James was scared into hysterics as a result of some very loud pipe sawing. He didn't open his eyes, but he cried heartily for quite a while. I called in one of the nurses to pass me the ear phones, put them on his little ears, and James settled quickly again.
We had two good feeding attempts today too. James was able to show one of his primary nurses what he is capable of and we were all excited! Small, James-sized steps moving us forward. What's not to love about the good signs?! Unfortunately, James had two very large projectile vomits. One was this morning while in his crib sleeping, and another was just after we moved him during one of my ill-fated attempts to take some pictures of him wearing his first outfit since January 5. That's what I get!
During rounds we talked about his new vomiting and it was decided that we'd trial him off formula for 48 hours and give him only breastmilk as a way to test his tummy. My crazy pumping regimen is starting to show some solid improvement in my supply so we can maintain this for at least 48 hours - phew! We'll chat with the dietician as well to see where we can add in extra calories and fats as James' growth dictates. After his second projectile vomit, the doc on today ordered an abdominal ultrasound for tomorrow. This is to rule out pyloric stenosis. The neonatologist feels this is the less-likely scenario because this condition apparently does not affect premature babies as much as term babies. However, we won't know unless we can rule it out. So tomorrow James will have the ultrasound and we'll be saying a big prayer that the vomiting is not because of that.
James had a little tummy time with the physio on hand this morning, many short cuddles with me throughout the day, and a nice warm bath and cuddle with his Daddy tonight. Overall, a good day.
February 25 - Day 177
Today was another good day for James. He slept a lot, but had great feeding attempts at noon and at bedtime to add some excitement to the air in his room. The day wasn't such a quiet one though as we were among some restoration construction going on, and amazingly enough, when James was sleeping he didn't notice the noise. One of the NICU fellows came into his room and asked if he'd had a hearing screen yet as it was so loud and he was asleep. It was nice to be able to say that he had passed his first test back in early January when he had just come off high flow.
The only concern came when James graced us with some serious projectile vomiting twice. We assume it's related to the formula, but we'll keep on watching.
February 24 - Day 176
James has been a sleepy boy the last few days. My guess is it's because we're working him harder when he's off cpap. The more work he does to breathe and reacquaint himself with breastfeeding, the more energy he expends. So today was a day where James was sound asleep at times, and awake for short periods in between.
We had some small success with feeding today - a few really good latches followed by some substantial but quick gags. Just in time for rounds though, James caught his rhythm and had a great attempt for 5 minutes much to my joy, and the docs surprise. It was great! After 30 minutes off-mask, it was time to put James back on. He seemed like he would have been happy to keep on going. He was falling asleep but doing that very cute baby latch to his own tongue. We put him back in his crib and he let out some sad James cries. It was the cry of a baby needing more that pat pats and the lullabies of his mobile. I gave him his soother and my attempt was welcomed by his little mouth. Success! Brief soother encounters seem to be the way to go right now, and the timing has to be perfect, albeit very difficult to know what James thinks is the perfect timing. Remember the old saying "If at first you don't succeed, try, try again"? Like all other children, he keeps us guessing!
Unfortunately, James had two significant vomiting episodes today which were completely unrelated to oral feeding, so we'll see what that's all about. My guess is it's him telling us what he thinks of the Good Start Formula. Not an easy transition for an already temperamental tummy. We'll give it a few days before we set off any alarm bells.
An interesting thing happened today and I'd like to share my long-winded recall: The lactation consultant who I chatted with on Friday came by to check in on our progress. Just before she came in, I was thinking of her and trying to figure out how I recognized her - in particular, her voice. It hit me like a tonne of bricks. Back on August 1st, I had flown back from Ontario solo to go back to work after our summer vacation. Sean and the girls were staying on for another 2 weeks. In light of the less-than reassuring ultrasound I'd had in June, I purposely booked in an ultrasound and medical genetics appointments for that first day back. It was this ultrasound when I learned that James had done very little growing over that 6 week period. My pregnancy quickly became high-risk. To say I was a crying mess is the understatement of the year. The physician who reviewed my scan asked me to wait out in the waiting area so she could contact the genetic counsellor I was going to see next and write a report on my scan. So picture me, sitting in a waiting area with what seemed like beautiful pregnant bellies everywhere, crying my eyes out, alone. Out of nowhere, this kind woman crouches down in front of me with a box of tissues and offers to buy me a tea. I wanted to hug her and never let her go. I was so desperate for that. Instead I choked out a thank you and proceeded to use the entire box of tissue. Fast forward 6 and a half months to today. When she came in to see me I asked her if she had any recollection of the above scenario and we were both overcome with tears as we talked about that day. I am so thankful that I had the chance to meet her and thank her for being so kind to me on that sad day. There are so many people who I encountered during that very scary month of August where, like the above scenario, I could probably relive each conversation word for word. Our soon-to-be family of five was surrounded by caring, compassionate people.
February 23 - Day 175
Today was a good day for James. He slept in until 11, then attempted to feed. He succeeded for a few minutes and such a feat is very emotional for me. We are trying hard to connect and today we did. James also had a very significant episode of gagging. He didn't spit up, but his body was working on it. There were no desats or bradys (which is remarkable), but it took him a few minutes of upright resting to settle his gag reflex down. I was spared the giant vomit that he shared with his Dad yesterday. Lucky me! James and I went on to cuddle for the afternoon, and we both fell asleep. For the first time, I succumbed to the quiet space and James' cozy warmth and slept in the big blue chair while holding him. It was one of the best naps I've had!
Today on rounds we weaned down his morphine a little bit more and made no other changes. James is really enjoying his off-mask time. He does great without the support and his little face deserves the break. We are making forward progress.
Today was one of those days when our nurses did or said simple things that made our day. Sean and I were awake early to watch the gold medal hockey game and we called in to see how James' night was after the game was done. His nurse told us that he cheered a sweet sound when she told him that Team Canada won! This made us smile. This evening when we called in the nurse answered the phone and said "guess who I'm holding?". She was talking to me while holding James. He was awake, so she gave him a break from his cpap and was cuddling him. Awesome! Finally, tonight, we called to check in to see if he was awake. Our nurse said he was sound asleep so we decided that we'd stay home and catch up on sleep. She said she'd give him a bath when he awoke and that we should enjoy a night at home. We are so thankful for the incredible nurses who give James amazing TLC every day. They make such difference in his life and ours.
It's very infrequent that one of us doesn't go up to the hospital at night. It feels wrong not being present. But after so many months, we recognize the need for family time and rest. While we are away from the NICU, we miss James and wonder what he is doing. Is he happy? Is he sad? Awake? Asleep? Wondering where we are? We can't wait to have him home so we can watch him to our hearts content and never have to wonder, because we'll be getting the long-awaited play-by-play!
February 22 - Day 174
James had a sleepy morning catching up on some rest now that he is breathing like a normal boy 3 times a day. By 11am we decided it was time to get up, he got his puffers and his 30 minutes of freedom. He decided to tell me what he thinks of his new formula mix and barfed all over his Dad. I had to wear a hospital gown home under my coat as that was my only shirt.
But the big news of the day was in the afternoon, Joanne got James to breastfeed. It lasted about 7 minutes and this is amazing news. Joanne said when he popped off, she told him how proud she was of him and he looked into her eyes as if to say, I know. That was around 3pm and Joanne tried again at 6pm with less luck.
This is really wonderful news. The feeding is going to take time and the fact that we are able to start now just means that we will get to the goal sooner. This plan to give James time off the CPAP a few times a day is awesome in that respect.
February 21 - Day 173
James had a great day. He slept a lot, but when he was awake, he was able to enjoy life free of his cpap mask. He is so excited when it comes off and right before we remove it, he seems to be telling us that he's ready for a break. His hands go to the mask, and he makes a great effort to swat it off his face. Today the team agreed to give James three periods off the mask in addition to the times he is off to receive his puffers. This is great and James tells us he's happy by satting well and taking it all in!
While I was there today and this evening, with the mask off, we took the opportunity to work on feeding. It wasn't entirely a bust, but unfortunately, James can't quite remember how to latch on. My biggest goal during these times is to stay relaxed. James needs me to be that way, and I know we'll have much better luck if I'm not working myself up into a basketcase state of "why is this not working!!??". That won't help either of us! I chatted with the Lactation Consultant this afternoon and they will come after the weekend to check in on our progress. The real bonus is that James is interested and happy to be working for a feed.
During rounds today, we decided it was time to add some formula to James' feeding regimen. With my frozen supply all but gone, I'm working hard at building up my milk supply again to meet his needs, but running a deficit and the pressure to pump is making me squirrely! Until now, James was getting a supplement to fill that void in my supply. Today, they've taken that away and replaced it with formula. So we'll see how his tummy tolerates that addition of formula and if his body can keep on growing without the supplement on board.
The excitement for the day came when Canada won the game against the USA in hockey this morning. I cheered (loudly) when the game finished and scared wee James out of his sleep. What a Mommy. I just couldn't contain my joy! Early Sunday morning he's going to hear all about the gold medal game from one of our wonderful primary nurses.
February 20 - Day 172 - Quality Time
Today, we abruptly said goodbye to Grammy, who came last week and has been a huge help. Grammy has been paranoid about her health and the thought of getting James sick. The day after she arrived last week, she felt like she may be getting sick so stayed away from the NICU. The events of January have taught us the absolute necessity of keeping germs away from James and James away from germs. The respirologist at yesterday's meeting even emphasized this. She said James' lungs are recovering now and a viral infection right now would be devastating.
Grammy was only able to come to the NICU once to see James. It wasn't a long time but it was quality time. James was awake lying in his bed, looking around, when Grammy walked in. He lit up immediately with the attention Grammy gave him and gave her a big smile instantly. James had a bath (which he loves) and was off his CPAP so Grammy could see his face and his big happy smile. Grammy said it was nothing short of brilliant. Unfortunately, that would be the only day Grammy was able to visit James as a cough or runny nose kept her away other days.
This morning Grammy woke up to a soar throat. She went to the doctor and was diagnosed with laryngitis - a respiratory, viral infection. The doc said it would last a week and so Grammy booked herself on the 5pm flight back to Toronto to avoid any possibility of infecting us or James. It was a visit cut short, but we are very thankful for the time she spent here, and so glad she had that quality time with James.
James had a rough night last night. He was fine from a breathing point of view, but was unsettled. So he had more of a sleepy day today. He ended the day with a bath with Dad and 30 minutes off support. Quality time for James.
The feeding is not really moving but Joanne and I feel like James will get there. We are trying to just make tiny strides, getting him re-aquainted with his soother, for example. It is good that we are starting now, rather than waiting another few weeks.
James had a cardio-echogram today as well. This is supposed to measure the pressures that his heart is under as a result of his lungs. We don't have the final report yet, but it was suggested to us that his pressure's might be up again, but then a note in his chart tonight suggested things weren't so bad. We'll hopefully get more info tomorrow or Monday.
A bit of a crazy day today. James missed one of the greatest comebacks in hockey history when the Women's Hockey team beat the USA in the gold medal game. They came back from a 2-0 deficit with 3 minutes to go in the third period to tie it up and then win in overtime. It was also nothing short of brilliant.The women's team took a page from James' playbook.
February 19 - Day 171 - the Plan
Today, we finally had a meeting to try to sort out a plan for James. We have been asking for this meeting for quite some time. Joanne and I talked before the meeting and recognized that right now, we just need a short-term plan to get James off breathing support and to get his feeding going. There was no real point in talking about a longer term plan or things like coming home on support, because we can deal with those issues, if necessary, after we have tried our best to get James off breathing support.
We were in the same meeting room, with the same neonatologist, sitting in the same seats as when we got that dreaded Peroxisomal (mis)diagnosis. There was an occupational therapist who deals with feeding, a respirologist (lung specialist), a very caring pediatrition who has seen James through his entire stay in the NICU and a neonatologist. We talked about various issues for about 45 minutes and I came out of the meeting feeling much better, much more upbeat and excited about the plan going forward.
Ever since day 1 in the NICU the end goal has always been the same: get James to breathe by himself and feed by himself. That's it. Once you can do those two things you get to go home. For obvious reasons, the breathing comes first. Once you figure that out you then work on feeding. For that reason I have been growing overly anxious to move the breathing forward. But there is more than one way to get to the end goal.
Rather than try to rush the breathing, and get James to high flow now in order to start feeding, everyone preferred to give James time completely off support to work on feeding. We will start with 30 minutes, twice a day and build on that. Progress is not going to necessarily mean weaning down on the CPAP settings, but instead, will mean more time off support completely so James can work on feeding. As James handles it, he will get more and more time off during the day. Eventually, we will try to get to the point where James is off entirely during the day and he can be on at night to give him a break.
The beauty of this plan is that James gets to work on feeding sooner, we don't need to rush coming down on his pressures, there is much less risk of aspiration (ie spitting up milk and sending it down the wrong tube and into his lungs) which can happen if you try to feed while on high flow, and most of all, James LOVES having his face free of anything. This plan sounds like a win win.
James ended up having a lot of time off today. He had a great day and I'm feeling much better about things.
February 18 - Day 170 - Progress
Today was a great day of progress. Before I get into the days events, I wanted to mention what a wonderful visit he had with Grammy last night. It was Grammy's first time seeing James in person since Thanksgiving. He was in top form, awake when she arrived and he lit up with all the attention she was showering on James. We gave James a bath which he was off the CPAP for. He was smiling, happy and stole Grammy's heart.
And now on to today. There was a good discussion on rounds which included the occupational therapists (who deal with feeding issues) as well as one of the neonatologists who has seen James though some big steps in the past. The end result of the discussion on rounds was to drop James CPAP setting from an 8 to a 7. This means slightly less pressure and so this is a step in the right direction. This is progress. One step closer to coming off breathing support. One step closer to coming home. James did great with the change. In fact, it meant far more to me (Sean) then it did to James.
I have been feeling a lot of frustration over the past week to the point that I have been in a bit of rut. I'm frustrated with the lack of progress on James' breathing (ie reluctance by nearly everyone to move him forward). James needs some breathing support right now (he is on CPAP) but it is debateable how much support he needs.
James is on a fair amount of support in the form of pressure (ie CPAP of 8) and he is doing amazing with that (... as would you or I...) So I keep asking to move him forward (ie come down on the pressures) and have been getting a lot of resistance: "...James was really sick a month ago... James doesn't handle changes well... we don't want him to go backwards... you need to be patient... slow and steady wins the race..."
All nonsense I say! That kind of mentality will see James celebrating his 3rd birthday in the NICU and it is irritating to no end right now. James is a million times better than he was a month ago. James handles changes just fine when you give him a fair chance. No-one at the Olympics seems to be winning races by going slow and steady! Really, it is just code for "I don't think James can do it" because, if you thought James could do it, you would drop the settings. Well, I don't share that view at all when it comes to most things to do with James. I believe James can do it. I think he is far better than everyone gives him credit for. He's not "poor James" he is "sweet baby James."
The hard part is being powerless. Normally a parent gets to decide how to parent their kid. If you want to let your kid ride a bike on the road with no helmet and no training wheels while eating sugar packets nobody gets to tell you otherwise. Unfortunately, I'm not able to change James' CPAP machine from an 8 to a 7... then to a 6... then a 5.. and then take it off.
The thing about breathing support is that no-one has any idea how James is going to do on a lower pressure until they try it and see how he does. If they were to drop James to a 7, and he desats and his respiratory rate shoots up, then he has failed and they can easily turn him back up to an 8. I can handle that. I can be patient. But I can't handle the no trying and then being told to "be patient." How would you like it if I stuck a vaccum to your face and when you asked me to take it off I said, "..be patient... we don't want to go backwards do we... slow and steady wins the race?!!" :)
Part of the problem is that I tend to be in the NICU in the evenings and on weekends, which is generally speaking, not when they like to make changes. Another difficulty is that while parents know their baby, they don't know neonatology or have 30 years experience in the business. The flip side of that however, is that the people with 30 years experience typically don't know the baby. Another thing is that my "problem" is nothing in comparison to the very sick babies who were born last week weighing 2lbs and are in the front room...fighting to survive... where James was many days ago... So it is all very complex.
Anyway, forgive me for doing a bit of venting here. I've since calmed down and am trying to enjoy James' wonderful progress rather than feeling bitter at the non-beliebers. (that's not a typo!)
It is very true that lungs take time. It is true that you have to be patient. It is true that slow and steady often wins the race. But after 170 days in the NICU, can you blame me for not wanting James to be there any longer than he needs to be?
The other complication right now, which Joanne mentioned yesterday, is James' lack of interest and ability to suck. It is devastating to think that he has lost this skill. What does this mean for his feeding? Will he be eating his next Thanksgiving dinner through a tube? This morning at rounds the Occupational Therapists (OTs) said we are in a window right now. They said that generally speaking, if babies reach 4 months post-term and have not learned to feed themselves... they have likely missed the boat. James is just over 3 months post-term. Until he gets off the CPAP, it is nearly impossible to work on feeding. In other words, the breathing slow train to nowhere might mean that James misses the feeding bus. How crappy would that be.
Perhaps that discussion was the kick in the pants needed to start dropping James' CPAP settings and move him forward on the breathing front. James handled the change like a champ (no surprise to Dad). Guess who will be asking tomorrow when can James go down to a 6?!
What made this day especially great however, was that at around 10:30pm, James fell asleep in my arms and I put him back in the crib so I could go home. He woke up (D'oh) but he started to smack his lips. I popped the soother in his mouth and, what do you know, James sucked on that soother just like the old days.... for a good 20 minutes. What a relief. What an amazing kid he is. A specialist in getting to the brink and then turning things around. Let's hope this great progress continues. I'll try to cheer up too.
February 17 - Day 169
For the first time today, James sat in a chair! It's called a 'tumble form' and looks similar to those car seat on a shopping cart contraptions you would see at some shops. James appeared to like the view he had from that chair. We set him up with a toy bar so he was able to have a few toys within his reach. His sats and heart rate were stable, and for 15 minutes, James enjoyed the new position. Such a simple thing, but for us, and for James, it is a tremendous triumph. These are the little things that mean so much and without the NICU perspective, any other baby in a chair is just that, a baby in a chair.
James is having great awake periods now. It's exciting to see him interested in the world around him, smiling at the boy on his mobile, and moving his little body. In spite of some substantial morphine and lorazepam doses still on board, James is active. The weaning process is slow and it will be March before James is completely off. He has been experiencing periods of withdrawal with the decreasing doses so like everything else, we're moving at a snails pace.
This afternoon saw James feeling sad for a short while. These days we don't hear a lot of crying from James - likely because he's still on sedation - so when we do, it makes us feel sad too. James appears to be a lot like his sisters were as babies, content (as long as they were being fed) and quiet. This is surprising after all he has been through. He tolerates a lot and he is just one amazing little boy. In an effort to settle him before I left for the day, I was cuddling him in my arms standing up (which is another very exciting thing to do). Much to my surprise, James started to root like mad, trying very hard to latch on for a feed. This brought me to tears. A blubbering Mom and a hungry boy - a real sight! Only a half hour earlier, I had attempted to offer James his soother dipped in milk. After some missed connections that left James gagging, I gave up. But to see James rooting gave me hope that we will get back to feeding. It is so emotional, and every time anyone mentions oral aversion or their opinions about where they think James is with this, it makes my heart ache. Tomorrow one of the very kind Occupational Therapists is going to come by and do some work with James and I so we can have a gentle plan and some tactics to move forward with.
Tonight, James is seeing his Grammy for the first time since October 11. I'm so excited to hear how the visit is going and I know that it will be a memorable night. James has tipped the scales at 4509 grams.
February 16 - Day 168
Look at this happy boy! He spent the morning with his Mom and the afternoon with his Dad. James is doing really well.
The biggest stress right now is that James has lost his interest and ability to suck. This is really unfortunate and we hope he can get it back. James was such a pro back in December before he got sick, it is upsetting to see he has lost the #2 most imprtant baby skill (#1 being keeping your parents up.... and breathing). So we will keep working at that while he continues to ride the slow train to lung recovery.
We hope this week will bring some forward movement on James breathing (ie weaning down the support.)
February 15 - Day 167
James had a great sleepy day today. It was a well needed lazy Saturday with Dad. They weaned James' "flow" down from 2 to 1 and he handled it fine. They don't have an oxygen dial anymore so if they want to give James extra O2 they do that by increasing his "flow". Each litre of flow is probably equivalent to about 3% of oxygen so today was like they turned him down from 27% to 24%. He had slightly lower oxygen saturations for the first little bit (still within range though) and thankfully they held tight because James was fine and right back to where he began soon enough. As many parents know, the less help you give kids, often the better they are because they figure things out themselves. Today felt like a bit of that.
February 14 - Day 166 - Happy Valentine's Day
Today James had his 4 month immunizations. We had delayed them by almost a month because he was so ill when they were first due. We all felt it was in James' best interest to delay no further. So this morning, with two nurses ready to poke simultaneously, and myself giving James a tighter cuddle than usual, he got his needles. With that, we heard James' loudest, most reassuring cry since being extubated. He was sad for 15 seconds, but very quickly settled in my arms and fell into a deep sleep.
Tonight, for the first time in what seems like forever, Sean and I are up here in the NICU together. After dinner out with the girls, we are celebrating Valentine's Day by bathing and holding our boy in the solitude of James' room. James loved his leisurely soak in the tub tonight. Sean works his magic by making sure the bath water is nice and warm, and entertains James in a way that only he can. James was mesmerized. James enjoyed a good period of mask-free breathing at the end of his bath and while back in his crib. It was great. All of that excitement tuckered them both out, and now there are two sleeping boys in the big blue chair beside me.
James is now 12 weeks post-due date. The plan for today during rounds was to immunize and make no other changes. James has a little bit of a temperature tonight, but it could easily be because he's cuddled up close to his warm Daddy. Lucky boy.
February 13 - Day 165
With Claire off school this week, I decided to take a much-needed break from the daily 'routine' and took advantage of the newly fallen snow to hit the slopes for a ski day with Claire. We really enjoy heading up to the mountains for some snow play, but this year that just hasn't been in the cards for our family. Today, it was so amazing to get outside and we had a great day.
For James, it was a quiet day in the NICU. He spent part of the afternoon being held by one of the NICU's wonderful volunteer cuddlers, and he spent a good majority of the day sleeping. James' Grammy arrived this week for what we thought would be alot of James-time, but unfortunately, she is under the weather, and has not yet been able to see her littlest grandchild. So we're hoping that in the coming days they will be able to enjoy some cuddles and company. To wind down tonight, James had a bedtime cuddle with Mommy and went on to sleep until morning!
February 12 - Day 164 - Packing on the Pounds
Well... a few days ago the docs wanted to see James putting on weight. In the past two days he has put on over 350 grams (almost half his birth weight!). He tipped the scales last night at 4370 grams which is roughly 9 pounds, 10 oz. You would think people would be happy with these kind of numbers but no, that's too much too quickly. They prefer a steady 30 or so grams a day. With the rapid weight increase James breathing seemed to be stepping slightly backwards today, to the point they were giving him a little bit of flow (which is how they give O2 on the bipap). It is pretty minimal so likely nothing to really be concerned about. James was also breathing a little more rapidly at times. My theory is the weight gain has something to do with it. Other than that, nothing major going on today. James is back in a crib for the first time since Jan 6 and he had a good day with lots of awake time with his Mommy.
February 11 - Day 163
Today was a good day for James. James' biggest sister is off school this week and she spent the morning with James serenading him with some songs on the violin. Claire packed a little bag with finger puppets, markers and snacks so she was well equipped to entertain, draw, and refuel. She is so good with James, and during these all too brief visits with her baby brother, Claire's natural mothering instinct and sisterly love radiate. It is so sweet to witness. I joked that she should have brought her Ergo baby carrier and toted him around his room!
Rounds this morning were eventful for good reason. We have moved James forward with his feeding. He's now getting his feeds over 2 hours, instead of 2.5. This is great because his tummy gets an hour long break now and we're progressing towards a shorter feed duration. This is an important step. The really good news is that the team has agreed that it's time for James to start getting small amounts of milk orally after his great showing at the soother yesterday. He's almost 3 months post-due date, and we can't risk him losing interest in oral feeding. So they agreed that he should get 5 mls of milk orally twice a day to coincide with his CPAP mask coming off when he gets his inhalers. Tonight James showed us that he remembers the delicious milk that he last tasted January 5. Wow. That night I remember thinking it would only be a few days until his next breastfeeding attempt. 5 and half weeks later, he's had his first taste, and his response was one of great interest! This is so encouraging, and I hope we can keep this positive momentum going. It would appear that James' next chance to breastfeed is possibly weeks away.
Today did have it's share of emotion. A very special pal of James' was happily discharged home from the NICU after more than 130 days. Her parents have become our friends, and in particular, I have really bonded with her Mom. The good days in room 44 were made better because we were there together teaching our babies to breastfeed. We chatted endlessly and shared many laughs and fears. Her Mom gave me hugs when my own could not. Our babies fell ill together and ended up side by side in isolation. It has been such a unique experience, and after saying goodbye to them this evening, I couldn't help but cry. I will miss them. They were the last of my NICU pals to be discharged home. James is waiting to be moved into a crib, so it would be extra special if the crib he gets is the one his little buddy just vacated.
On another emotional note, when I came in tonight to see James, I was lucky to see another very special couple who we met back in November on that celebratory day when we found out James did not have Peroxisomal Disorder. Their beautiful daughter lived for a short 30 days. I will never forget this family or their story, and to see them months later was so bittersweet. We shared tears and tales, and I was able to see some videos they captured of their little angel. Amazingly enough, along with her friends, this mom crocheted 30 hats of various preemie sizes to signify each one her baby girls' 30 days of life. They came down today to share them with the NICU. I expect that we will keep in touch with both of these families over the years, along with a few others we met.
Our journey is one that is a hard one, but its ours, and special relationships have blossomed along the way. Each day, James' life blesses us with perspective and hope.
February 10 - Day 162
James continues to do well on the CPAP support! Today was a quiet Family Day holiday for James. He spent it in the company of his Daddy all day, and with me tonight. Next year will surely see us spend such a holiday together.
One of the topics of discussion this weekend has been oral aversion and whether or not James has developed one since this illness took him away from oral feeding and soother enjoyment. Yesterday he wasn't so into his soother, but today, with some great persistence by his nurse, and with a soother dipped in breastmilk repeatedly, James took to his soother like the good old days. We hope that the interest stays strong, and that given the opportunity, James will get back to oral feeding. It's hard to know when he'll be able to get back on to feeding. I think this week we'll likely see Occupational Therapy for a little visit and some guidance on what to do in the meantime to keep the hope alive!
Tomorrow James will see his Grammy again for the first time since October. Back then, he was a little 2 lb. intubated baby boy. These days he is ready for the stories, songs, pat-a-cakes, and cuddles they will be lucky to share.
February 9 - Day 161
James had a great day of moving forward! Today started off on the right foot - they changed over James' settings from Bipap to CPap! Woo hoo! He has had a great week since extubation last Monday and the team is happy with his progress. As previously mentioned, he does well off the mask for short breaks for puffers and photo-ops. This morning he was on room air (21% oxygen) and desats these days are few and far between. The only time he seems to really be setting off the alarms is when he's kicking up a storm with excitement. So the team felt it was a good day to challenge our boy and see if we was ready for cpap. James had a good day. He cuddled Mommy in the morning and early afternoon, and Daddy tonight. Thus far, the day has been uneventful. James clearly didn't notice the diminished support.
We can expect that if James follows the trend that he has established for himself, the next few days we'll see him a little sleepier than usual as he transitions to working harder to do the breathing on his own. Hopefully he'll have his usual spunk back in a few days and he'll be no worse for wear. His weight is up and down the last little while too - after being so sick, getting a few doses of Dex, and now working harder to breathe on his own, James is having a tough time packing on the pounds. So we're keeping a close eye along with the Dietician to see what the next few days show.
Tonight, our beautiful boy is resting easy. This makes us happy.
February 8 - Day 160
Well look at that happy boy. Today, for the first time in over a month, all 3 Stynes kids were well enough to hang out together in the same room. James was cuddled by everyone and then had a bedtime bath. What a great day.
They are continuing to go down on his sedation that is still leftover from his days on the ventilator but they can't just quit cold turkey. They also want to see James gaining some more weight so they are going back to supplementing his feeds with formula. The plan is to switch his bipap settings from giving two pressures 12/8 to just one CPAP pressure of 8.
We used to have 4 bins of frozen milk in the freezer which I was shocked to learn is now down to one. James has finally reached a point where he is consuming more than is produced. Joanne made a pit stop at the herbal supplements store on the way home from the NICU today to see if that can boost production.
February 7 - Day 159 - Slow Train
Today was another good day for James. No changes (more on this later) and he hung out cuddling with his mom for most of the day and with Dad in the evening. They talked about switching James to this other machine (the "trilogy") but the doc on duty today felt like 'if it ain't broke, don't fix it', meaning why switch James to a different machine when he is doing just fine on his 'bipap' machine.
The picture of James on the left is his 30 seconds of freedom from the triangular vacuum that is normally stuck to his face. He's getting some asthma-like puffers twice a day and to do that they take him off the bipap. What is amazing about this, is for the last few days, when they do this, James does 100% fine off the bipap. His oxygen saturations do not change one bit. He looks great. And it has me questioning the current path he is on, which seems to be "don't change anything until the summer". I'm kidding about that, but it sort of feels that way.
As you all know we've been at this NICU game for a long, long time. Too long. We've learned a few things during this time. One major lesson is that you need to have an incredible amount of patience. But, on the other hand, you have to stand up and advocate for your kid too because nobody in the NICU knows your kid like you do. It may be that my patience is running a little low this week but I'm a little surprised that there is little, if any forward movement for James in the breathing department. No real appetite to go down on his settings and get him off the bipap and back breastfeeding. Of course, everyone wants to get James back to that spot - where he was on Jan 3 - but many of the staff, particularly those who know him well, don't seem to have much faith in James and stick to the "slow and steady" motto. It's easy to do that in the NICU. Don't rock the boat. Don't change anything and you won't go backwards. The problem with that philosophy is that you don't move forwards either. There is a time to hold the line and there is a time to move forward and every doctor has a different tolerance for when that is.
To many, James is like a glass doll capable of breaking with the slightest change. To me however, he is an awesome little kid, tough as nails, who has battled through tremendous odds and has a much better life awaiting him once he comes home. The difference between those perspectives seems to be the same difference between 'slow and steady' and 'push him forward'.
James is 100 times better than he was a month ago. He had para influenza (a respiratory viral infection along the lines of croup) and it took him down real hard. He was fighting for his life just three weeks ago. But some people say that kids who go down from this type of infection, can often get back to where they were fairly quickly after the infection has cleared. When you see James off the bipap and doing just fine (albeit for 30 seconds), I can't help but think that maybe James is far better than everyone gives him credit for. I also think about how last week, when he was on the ventilator and the 'slow and steady' path and then a doctor dropped his rate dramatically, and James woke up and flew like a bird. It all makes me question why we have to be on the 'slow train' when James was in such great shape before January 6? He wasn't far away from coming home before he caught para influenza.
We've requested a bit of a sit down with the NICU team and hopefully some people from respirology to take stock of where we are and where we are going. Hopefully that will happen this week. In the meantime, I'll need to remind myself to be patient. On the bright side of things, James is doing well and this weekend he's going to get to spend time with his sisters again - something he hasn't done in over a month - something he will get to do everyday when he is home.
February 6 - Day 158 - Bath Time
James woke up early around 5 and was upset. He continued like that until 8am. We had great nurses on night and day who both cuddled him to try to soothe James. They ran a blood gas in the morning however, that was quite bad. Who would have thought that being upset could send the C02 in your blood over the limit?
Things greatly improved as the day wore on. James cuddled with his Mom and settled down. They repeated the blood gas and his results were fine. The CO2 had come down to normal levels. After this, James had his first bath in over a month. It was awesome. He spent nearly an hour in the tub and then got to put on some cozy jammies and cuddle with mom for several hours. Not a bad way to spend a cold winters day.
February 5 - Day 157
James had a good day today despite being a little more fussy. They are weaning down the morphine he was on when he was intubated so this is likely to be expected. He had a blood gas which came back at 40 (which is amazing) but despite that they are not budging on any of his pressure settings until the dust settles. One of the great things about not being on a ventilator is that taking James out for a cuddle - or even repositioning him when we are holding him - is easy and doesn't require a team of Respiratory Therapists (RTs). James hasn't had a bath in a month so he smells slightly better than Daddy's hockey equipment and so we are hoping to do this today or tomorrow and get him back into some cozy pyjamas.
February 4 - Day 156
James is still rockin' the bipap! Twenty-four hours in and the mood is cheerful. James had a quiet day today, spent cuddling with both Mommy and Daddy, and sleeping. Anytime James has been switched between modes of breathing support, we have always noticed a trend where he is sleepy and less active for a few days afterwards. Today was a reflection of that trend. James' energy is going towards breathing, and he has little reserve for anything else. So while we didn't see any dancing feet or his version of the worm, James represented with great oxygen saturations!
His feeding schedule was finally changed from continuous to feeding over 2.5 hours with a half hour for his tummy to be vented. This allows air to escape through his NG tube. While on forced air machines like bipap, James tends to trap ALOT of air, which leads him to be a gassy boy. So every little bit of downtime for his tummy is great and it's also a step in the right direction of slowly moving him back to feeds for a shorter duration.
He is settled with the bipap mask on. In spite of its large size, he was still able to enjoy a bit of eyes open time looking at us, his aquarium, and his beloved contrast book. The team is working on weaning his sedatives now too - we held off for a few days when James was on the cusp of extubation simply because nobody wanted James to be so active that he'd extubate himself. It was very close! So the next few weeks will hopefully see James off sedation for good. Tomorrow we're hoping to see James move back into a big boy crib. He's been in an isolette since January 6th. The top is up, but its time for him to move back into a crib. We will then have a chance to turn his bed into the disco that it once was with his mobile and aquarium ready to overstimulate him at any moment!
Today was a good day. We are breathing easier and hoping for more good days from here on out. During rounds this morning I was laughing freely and it felt right again. We were all giddy with excitement for little mister bipap!
February 3 - Day 155 - Atta Boy!
Our sweet baby James gave it his all, and was successfully extubated! Today started off as most good days do. James was splitting his time between sleeping soundly and happily awake. He was given his first dose of Dex at 6am. He had chest physio at 1030am, and he loved it (as always). We were itching to get him extubated, but the glitch was that the machine they wanted to put him on (Trilogy) was having a last minute software update. So the RTs thought it would be closer to 230pm before the machine would be ready. Turns out, that machine was just not the right one for James, because the update just wasn't working. So they wheeled in a Bipap machine called Synchrony. It could give James higher pressures than biphasic, but not as high as trilogy. Understandably, I was nervous. We all want James to be extubated and stay that way!
So this afternoon, James had another round of chest physio, during which time he melted my heart repeatedly. He was so happy, smiling constantly. Looking at me and engaging in his adorable little way. Even the physio was crooning with love for our boy. It was so memorable. We pushed our luck with the suctioning though, and quickly James became inconsolable. Crying without a sound, but with big tears. It wasn't easy to see. The RT and doc were coming around to extubate and it became very obvious that unless they moved quickly, James would cry his tube out. So the calm, controlled extubation felt a little chaotic because of James' state, but he instantly settled sans endotracheal tube. He was so ready to get rid of it!
The mask for the bipap (pictured to the right) is rather large. It's a soft, silicone material that is pressed against his face. James was settled once the team did some tweaking of straps and found a hat that would fit his little noggin' properly. James was asleep, breathing easy on very little oxygen support, and rocking the sats. That made for two of us that were breathing easy. An hour after extubation, James ran a blood gas that was perfect! Hence the A+ pictured above! The doc wrote that on the page on her way out for the day. It was a sweet gesture to mark an exciting day.
Today was 4 weeks from that ill-fated hernia repair. What a rollercoaster it has been. But this last week, James has shown us tremendous progress. Many people popped by to see how he was doing on his new machine, and they all shared smiles and little Go James Go cheers. The doc with us today commented that James is a special boy winning over NICU hearts and they all want to see him do well. It is a very heartwarming thing to hear. James is our special boy, and to know that the incredible NICU team have genuinely shared in our triumphs and our pain means so much to us.
Tonight, Sean is cuddling our little boy in an easy 'football hold'. James has a hoarse little cry after the trauma of being intubated and active for the last few days, so his Daddy's warmth should be the perfect medicine to ease the discomfort.
February 2 - Day 154
James had a great day today and spent most of it alert and kicking up a storm. Even during physio this morning, James was kicking his legs to the beat of his chest - it was his own little dance routine. He made us all smile!
The plan is for extubation in the morning. He is going to have one dose of dexamethasone first thing in the morning, followed by two subsequent doses 8 hours apart. The hope is that the little bit of steroid will decrease any airway swelling, and in turn, increase James' success breathing with the help of the Trilogy machine.
James finished off the day with a late-night Mommy cuddle.
February 1 - Day 153 - Five Months Old
James had a good night and continues to be performing like a star (on the ventilator anyway). This morning on rounds the neonatologist who saw James through that very rough week in early January, when he was on the paralyzer drug and fighting to survive, was back. He wants to get James extubated (music to my ears). The concern was that James is at times "riding the vent" (ie breathing only at the rate set by the vent, so it seems, letting the vent do all the work). This neonatologist wasn't sure about that. He thought it might be that James is just breathing at a lower rate when he is sleeping. So they did a test and dropped James rate down to 20 (ie the vent would only give 20 breaths a minute and it was up to James to do the rest). Amazingly, James breathing rate went up to 60 (meaning James was breathing MORE than before) even when sleeping and his saturations went up and his O2 requirements went down to 21%! Are you kidding?! In other words, they took away the crutch and James walked. James seemed to get the message that he needed to step up and start breathing for himself. So that tells them that James can probably do it if he is given the chance. This neonatologist sees a window right now for James to get off the vent so he wants that to happen soon. The plan is to extubate Monday.
Earlier this week, when James coughed out his tube, they put him on a kind of CPAP machine designed for neonates (ie premature babies) - the same machine he was on in October when he was extubated originally. Several peoplehave since told us they weren't surprised James wouldn't make it on that machine. James is two months past the day he was supposed to be born so he is now conisdered a "big baby" relative to other babies in the NICU. So it seems he needs a CPAP kind of machine that is made for bigger kids.In other words, he didn't get a fair shot.
When big kids end up in the emergency department and go into breathing crisis they end up down the hall in the PICU (Pediatric Intensive Care Unit) and they have machines there that give bigger pressures. So the NICU is borrowing a machine from the PICU. There are two potential machines - one called syncro-something and the other one is called "trilogy". Everyone seems to think the trilogy machine would be best. There is one in the "garage" right now that is supposed to become available on Monday so the plan is to extubate James on Monday. He needs to behave homself for the remainder of the weekend - no funny business. So far, he's been a star on Saturday. It is great to see James moving forward. Hang in there James. Tube-free breathing may be close at hand.
January 31 - Day 152
Today was a good day for James. Gasses were good, O2 requirements were between 21 and 25% and he had a long cuddle with mom. They dropped James' pressures too so he was basically back to where he was earlier in the week, but now on lower oxygen requirements - a sign of improvement.
January 30 - Day 151
James had a quiet day today. He spent it having chest physio in the morning and afternoon, a three-hour cuddle with me this morning, a chest x-ray this afternoon, and a nighttime visit from his daddy. He slept a lot, and while awake, he was moving. His arms were going, as were his legs and he was doing his best to get that tube out of his mouth. James is telling us something. He's not quite ready for extubation, but I admit that I'll be shocked if James is able to make it to the next planned extubation without taking care of business by himself. It's good to see him active, but also nerve-wracking because we don't want him to reef out his tube, cough it out again, or knock it out with his overactive hands. We hope so badly that the coming days will see James continue on this path of improvement, and ready for a change in breathing machines. His heart rate was sitting a bit lower today than his usual, so that always tends to give me a little added worry. In days past, James has a resting heart rate that is lower when he has something brewing. The team drew some blood work and nothing remarkable showed up. We'll watch him closely (as we do everyday) for any signs or symptoms. His blood gas today was great.
Tomorrow James is 10 weeks past his due date, and to celebrate, we are planning to get a few hands on deck and give James his first bath since January 5th. He has never had a bath while intubated, so it will be a first. I hope he is reminded of the good life when he is immersed in the warm, soothing water.
This weekend marks five months in the NICU. Five months. It's hard not to reflect on milestones such as these - not because they bring us tremendous joy, but rather, it's just so hard to believe. We can't wait to bring our baby home.
January 29 - Day 150 - Unintentional Extubation Today
Today started off easy and simple. James was sleepy this morning as he endured chest physio and my singing. The secretions were thick and frequent and James had quite a bit of suctioning to pull them out.
I was excited to take James out for some mommy-time. Now that his room has far less equipment, in rolled a big comfy recliner chair for our cuddle, and out went the upright little guy. The upright is great for breastfeeding, but not for long, sleepy cuddles. So out came James - sound asleep - and he did great in the transition. They suctioned him for a ton of fluid once on my chest, and then he lulled himself into a very deep sleep. So deep that he didn't breathe over the rate set on the vent. I put him back at 1pm to grab some lunch with a fair bit of remorse. It's hard to say "ok, lets put him back" when all I really want to do is hold him all day and let the whole world fall away.
I met up with one of my NICU friends and we chatted away during lunch. As we were saying goodbye, we were interrupted by an overhead page "RT to South 2". I went to see what was up with my boy. I walked into his room, saw his oxygen saturations at 30, and asked what happened? "He self-extubated!" was the response I got. James coughed out his breathing tube! The nurse heard him cough from the nurses station (which you should not be able to hear when a baby is intubated), and then on the monitor saw his numbers all drop in dramatic fashion. So at that time, James was being manually bagged, and many overhead pages were going off: "RT to south 2 stat", "doctor to south 2 stat". With the tube out, they decided to give James the benefit of the doubt and hooked him up to Biphasic. They avoided some of the other, higher pressured supports that were discussed just days earlier and went with the simple machine that is not great at maintaining pressures. James had about 2 minutes where he wasn't indrawing. Then the struggle began. We didn't even get to the point of the gas being drawn - James was not the best colour, he was gasping for air, and looking generally unwell. We all wanted James to fly, so to speak. But this afternoon just wasn't the time.
After two attempts, James was reintubated, and he tolerated that quite well. So tonight, our little lad is back on the conventional ventilator, on higher settings than he started the day off on, but he's oxygenating well. So, while today can't really be called a setback - it wasn't supposed to happen in the first place - in the realm of accidental, non-intended extubation, it still strikes the emotional chord seeing the frenzy that surrounded James, and wishing so badly he could have done it. Perhaps he's saving up some surprises for February.
January 28 - No Extubation Today
Well, not the end to the day we had hoped for, but it is for the best.
Today was supposed to be extubation day for James. Early this morning the RT's changed some of his settings in order to get James ready for extubation. They changed the mode of ventilation to one that does not guarantee you a minimum pressure (more like real life breathing) and came down on his rate and the level of pressure. Then they drew a blood gas.
The gas was ok - not stellar - but acceptable. But as the day wore on James was requiring more oxygen support to maintain his saturations. He was above 50% and so people were getting nervous about extubating him. So they ran a chest x-ray and his lungs didn't look all that great. So they made the call to halt the extubation.
We've seen James extubated before and not make it, only to have to be re-intubated, and usually resulting in a bit of a setback. So not going ahead is probably a better alternative when compared with extubation-not making it-then re-intubation.
But this is not to overshadow the great news today that James got to be held by his mom for the first time in almost a month. James had big smiles for his mom and then fell into a deep sleep in her arms.
January 27 - Day 148 - A Song of Good Hope
Well today was one of James' best days yet. He was up for a good chunk of the night, but happy and content looking at his favourite book. Then this morning at rounds a different neonatologist was on and he said, let's get this boy extubated... tomorrow! So they weaned down some of James settings as a preliminary test and did a blood gas (which checks among other things the level of CO2 in his blood). His gas was better than his last one.
On the one hand extubation can't come soon enough. On the other hand, we're a little nervous about two things. First, James is on some pretty heavy sedation (morphine and another drug) which ideally they should come down on before he is extubated. As a result of the sedation, there are times when he will "ride the vent" which means the machine is doing all the breathing. You can't do that when you are extubated. You have to breathe for yourself. They can't come down too fast on the sedation or he can go into withdrawal and freak out. So they came down a bit - and James was mostly alert and over-riding the vent, but it would be better if he came down a little more I think. Later this evening James was really awake throwing his arms around and kicking when looking at his favourite book - a good sign.
The other issue is the type of machine they are going to switch to. James still needs breathing support and typically babies are extubated to the CPAP machine (with a mask and hat). There is debate about whether James, now over 4000 grams, is too big for their NICU CPAP machine. So they might break out some heavy artillery and use a machine called a "BiPAP" from the Pediatric Intensive Care Unit (PICU) down the hall, designed for bigger kids who need ventilation. The BiPAP machine, we are told, can deliver some pretty heavy pressure. We were also told a lot of kids hate it. James still needs to cough out some of the remaining fluid in his lungs and there is some concern whether he will be able to do that against the pressure of the BiPAP machine which, it sounds like, is capable of sending some gale force winds against your face.
Either way today was a great day and tomorrow will be an even bigger one for James.
Without getting too sappy or cheesy, I wanted to post the lyrics to one of the songs that hits a nerve every time we hear it. There have been a few artists who have gotten me through these tough times and whose music will always remind me of James and this time. The lyrics of this song seem to speak to James. It's called a song of good hope by Glen Hansard. You can probably find it on Youtube if you want to listen:
If we're gonna make it
'Cross this river alive
We need to think like a boat
And go with the tide
And I know where you've been
It's really left you in doubt
Of ever finding a harbor
Of figuring this out
And you're gonna need
All the help you can get
So lift up your arms now
And reach for it
And reach for it
And take your time babe
It's not as bad as it seems, you'll be fine babe
It's just some rivers and streams in between
You and where you wanna be
And watch the signs now
You'll know what they mean, you'll be fine now
Just stay close to me and make good hope
Walk with you through everything
May the song of good hope
Walk with you through everything
January 26 - Day 147
James had his chest x-ray early this morning. The docs seemed happy with his progress although it still shows his left lung to be quite cloudy. The right has improved. As fluid shifts different parts of the lungs get better or worse. His gas this morning was ok, so no changes to his settings. The only change today was that James' PICC line came out. So he is free of all IVs again, let's hope he stays that way. His arms and legs are free again. James spent most of the weekend sleeping.
January 25 - Day 146
James had a good day today. The amazing RTs are happy with his progress and where he is at right now. There are rumblings of possible extubation this week - maybe - as James is moving in the right direction.
Tomorrow James will have another chest x-ray and a gas. This will be a good marker of where his lungs are at, and give us a sense of how far we might be from extubation.
Otherwise James had chest physio and cuddles with dad on a chilled out Saturday. He is doing well in many departments. Joanne remains down for the count, so it will be just the boys at the NICU this weekend (as it was all last week). We remain quarantined on Beatty street, I'm sleeping on the rooftop so it is a good thing the weather has been so nice in Vancouver. It is really tough for Joanne to be away, but the girls are getting some quality mummy time.
January 24 - Day 145
James had another good day today, relatively speaking. He had gasses in the morning and evening that were good. He came down on his settings. He had a three hour cuddle with Dad.
They are trying to figure out James pain medication (sedation). You can't be on a ventilator without something. Too much though, and you turn into a space cadet and "ride the vent". By "ride the vent" I mean they set a certain number of breaths per minute (ie 40). James can breathe over the vent (ie at 60 or more) when he is awake. But this afternoon he seemed to be so hopped up on goofballs that he was riding the vent. But then, overnight, it was the opposite and he was on edge. They will discuss this at rounds tomorrow.
Because James was such a space cadet this afternoon, they decided to run a blood gas and take blood samples for his "CBC" and "CRP" just to be sure that the issue was sedation - and not something else. Basically the extra bloodwork checks his level of hemoglobin, platelets, white blood cells, yadda yaada. Everything looked fine. His gas was also quite good so they went down on his settings.
January 23 - Day 144
Today was considerably better for James. Other than a blood gas in the morning (which was good) and some chest physio, it was a pretty chilled out day. He remained stable, did not require suctioning as frequently as other days, and overall, had a good day.
The highlight of the day was a two hour cuddle with dad late this afternoon. You might have picked up in yesterday's post that I was a little choked at the staff who said no to a cuddle. Well today was a new day and new staff and not to be a know-it-all, but it was no surprise to me when they said today that James' best hours of the day were the ones he spent outside of the isolette hanging out with his dad. Stable as can be. No sweat in the transition.
Since January 6 James has been bedridden and lying horizontal. He gets rotated every few hours like a rotisserie chicken, but several of the respiratory therapists have stressed to us over the duration of our NICU tour the importance of getting James in an upright position in order to improve his lungs. They say when you are upright, the diaphragm and stomach drop and allow the lungs to expand and fluid gets to drain more naturally. So today James had 2 hours of vertical time and hopefully it helped his lungs.
On the recommendation from respirology, they also gave James two different kinds of inhaled medications, kind of like the stuff people with asthma inhale through a puffer. It's not asthma medication, I just mean it was given to him through his vent tubes like a puffer. I'm surprised that there isn't more options for babies of this kind of "puffer" medication. When you see someone with asthma having an attack, and then two puffs on the puffer and they are good as new, you would think that some brilliant scientist might have developed by now a magic puffer for babies. It seems a lot of the medications that work on kids or adults, don't really work on babies. What they need is time. But there is a million dollar idea for anyone out there able to discover some kind of medication to help with premature lungs.
So we will see if these medications help improve things. I was told one of them is kind of like the dexamethasone, an anti-inflammatory, that got James off the ventilator back in October.
There is no date in sight for extubation, or homecoming, but days like this make both of these things closer.
January 22 - Day 143
James had a rough night last night but hung in there and sorted himself out over the day. He was having those regularly scheduled bradys every 15 minutes and requiring suctioning. He seemed to ride it out and by morning these episodes were less and less frequent. He had a busy day of chest x rays, physio, a blood transfusion, blood gasses, etc...
There was talk this morning and again this afternoon of switching James back to the jet. His chest x-rays both in the morning and in the afternoon looked bad (I haven't seen them but that was the report). But everything else seems to be good. His oxygen requirements came down to 30% by the end of the day. Blood gasses were decent. Saturations good. James specializes in puzzling everyone.
Although it seemed at times that James was hanging on by a thread (from being demoted to the jet that is), they actually went down on some of his settings today, which I think is because they want to get him closer to extubation. They dropped his respiratory rate this morning (ie how many breaths the vent gives James) which he tolerated fine (he can over-ride the vent by breathing for himself which he continued to do well despite less help from the vent). Later on they dropped the amount of pressure he is getting. It is wonderful to see them trying to move James towards extubation.
Extubation (aka tube down throat comes out so you come off the ventilator and switch to less invasive support like CPAP) cannot come soon enough. Being on a ventilator has to be one of the worst things in the world. It is a vicious cycle because it causes more secretions in the lungs which is what prevents James from coming off the vent. It can be a trap.
We had hopes of being able to hold James today but that was vetoed. Nothing will take the wind out of your sails like someone telling you you can't hold your sick, hospitalized baby... when being held upright would probably be the best thing for him. But you bite your tongue and try not to dwell on the negative or you'll go nuts. James is hanging in there and so are we.
January 21 - Day 142
The excitement for today was that James was switched off the jet ventilator to conventional ventilator. The conventional is said to be a more 'natural' form of ventilator support, since it sends a breath in and out similar to the way we would breathe naturally. The "jet" which he has been on for the past two weeks is a high frequency ventilator, which is different. I don't fully understand it but I think that it maintains the lung pressure and then sends in spirts of air more rapidly. This results in the body having a little "shake" like you are sitting in a vibrating chair.
This move was probably a good one for James and a step forward. The jet is considered to be a "rescue" ventilator although anytime James has ever been put on the jet, perhaps to make us feel better, they often said "don't think of it as more support just different support." Moving to the conventional ventilator will hopefully help getting him ready for extubation, although last time he was extubated directly from the jet.
James tolerated the transition well throughout the day, but as the hours passed, James began to struggle. Every 15 minutes, right on cue, he would have bradys and desats. Suctioning would pull him out of these, but it left the team puzzled. The mystery of it all was that James was having great blood gases, saturations were good, his oxygen requirements remained in the 30s (wonderful) and the little graph on the ventilator was showing good volume. In other words, all the usual signs of how he is doing looked good, but James was having these constant bradys and desats. Then they ran a chest xray which was much worse compared to the one they did in the morning. There was talk about needing to extubate and re-intubate James to switch out his tube - perhaps secretions were blocking it, and causing the vent to stop working. Or was it James fighting the vent? Or did he need to go back to the jet? He's a big boy now, and he can quickly clamp down, stopping air flow. They did not want to have to switch out his tube overnight because there are fewer people on staff, so they upped his pressure slightly to see if that would help. James always keeps everyone on their toes.
Joanne is still in exile from the NICU, which makes everything harder. We hope that tomorrow Sean may get to hold James. It's been 16 days since he's been in our arms.
January 20 - Day 141
Joanne has been feeling under the weather which kept her out of the NICU today and likely for the next few days. As hard as it is to stay away we know better than anyone it just isn't worth going in when you feel sick. James must have known his mom was away so he took the opportunity to sleep for most of the day. When he has sleepy days like this he tends to be awake around 8pm and often at 2 or 3 am. Sure enough, at 8pm he was wide awake for dad. He gets so excited when you show him the picture book with stripes and shapes.
James had a good gas this morning causing them to go down slightly on some of his settings. He also had a chest x-ray which showed a significant improvement since his last x-ray on January 16. His left lung looked good and his right one was patchy but ok. The one on January 16 was really bad on the left and sort of bad on the right. James is also back up to full feeds and off the powerade IV that he was on during the sick days. So he has taken some baby steps forward. I think the plan is to hope for these sort of baby steps over the next week or two and then start thinking about extubation. He has quite a ways to go before he will be ready to be extubated. Fragile lungs require so much patience.
January 19 - Day 140
James weekend has gone as planned. Nothing really changed. He is back to getting feeds now. He is stable. He remains on about 40% O2 and significant support from the ventilator. Suctioning is still bringing up lots and lots of mucus.
James had a lot of awake time today with Joanne. He loves this little book (pictured on the left) that he received from an anonymous former NICU family at Christmas. He was so alert, moving his arm and leg. He seemed to be excited by the pictures.
As much as this weekend was good, it does feel like James might be "stuck on the vent". It is such a shame that this happened after the long road his lungs took during the fall. James was roughly 2 months on the ventilator, followed by a month on CPAP and another month on the high flow. Hopefully this week James is able to come down on his settings and start moving forward so he can get off the ventilator and get back to where he was on January 5.
January 18 - Day 139
James was settled today and was able to rest as much as possible. Now that he's in a better, more stable position, his suctioning needs are less, and in between handling, his body is left to sleep. He continues to have chest physio a few times a day, and he is repositioned every three hours. This positioning helps to shift fluid around in his lungs, and in turn, they have a better chance of removing it through suctioning.
Today saw James lose his second arterial line since falling ill. It was placed yesterday, but lasted less than 24 hours. So back to poking his already sore heels. Luckily, James is having fewer blood gases, but at least twice per day those little heels get poked and squeezed to get the blood sample.
Tonight, James is back down to one on one nursing. For the last week, James had two dedicated nurses working with him each shift (along with a very dedicated respiratory therapist), and his care needs kept them busy. This is a sign of progress for James, and we hope this continues. For any of his handles, it requires two, if not three people because of the numerous lines and his endotracheal tube connected to the jet.
We are hoping that over the coming days, we may get the chance to hold James again. I last held him the morning he went to the OR, but it wasn't for any great duration unfortunately. He was rooting away looking to be fed and because he was headed to surgery, was unable to eat. A sort of cruel punishment, so I had put him back to bed with his soother instead. Right now, if there is any increased risk in James being accidentally extubated, the team wants to obviously avoid this. His lungs are just too fragile to withstand any additional trauma. So we wait. In the meantime, James is getting a healthy dose of tummy time, bum pats, and our hands cradling his head and back.
January 17 - Day 138
Well today was another good day for James. I think it is safe to declare that James is through the worst of his respiratory infection and he has turned a corner.
His O2 requirements are in the 30s and 40s and he remains on maximum support, although some people say there is always room to go up higher on the ventilator settings. Hopefully they don't however because James needs to come down on the settings before he can be extubated.
So our level of stress has gone down significantly compared to a week ago... corresponding with James' oxygen requirements. In fact, that is probably a pretty good guage of our worry level with James. When he was on 100 percent oxygen we were 100 percent stressed. As I write this I am only 42 percent stressed about James. Maybe add in a few jet boosters when calculating Joanne's worry level. Our worry cannot go below 21 percent (room air) until he is at least 5. By that time the girls will be approaching their teens so he can pass the baton to them and we will stress about them.
As much as James has suffered a huge setback in the past 2 weeks, he is currently stable and doing OK. I think the plan for the weekend is just to chill out and stay stable. Kind of the opposite plan of weekends when you are 19. I dont think they are planning anything drastic to try to move James forwards this weekend. It will be baby steps again with James.
January 16 - Day 137 - Recognize this sweet boy?
Last night James spent upwards of five hours awake, holding hands with his nurses, watching his aquarium, and probably blinking, trying to make sense of his little world. When I called for report this morning at 6am, I was happy to hear that he'd had a great night! I approached today with guarded optimism, but for the most part, James had a stable day!
There is still a lot going on for James. He is requiring a lot of support on the jet, with numerous intravenous medications, including antibiotics, sedatives, and nutrition, and he is having the contents of his stomach suctioned out. He isn't out of the woods, and if this is the early days of getting over this respiratory virus, our journey feels like it's just beginning. Yes, after 137 days in the NICU, it feels we have hit repeat.
This morning in rounds, the attending neonatologist remarked that we will continue to take it hour to hour, and just watch our boy. So far, since James had his near-catastrophic OR attempt, and parainfluenza to compound matters, most of the goals the team have set forth have not even been attempted. He's been too unstable with an ever-changing clinical picture. New today were some very dramatic bradys (dropping heartrate), mainly with suctioning, but sometimes at rest too. James is a baby who always had bradys with suctioning back in the early days, and even three weeks ago while breastfeeding, but he was able to recover quickly. So we'll keep our eyes on this, and the nurses have been trying to capture these in print. While he seems to be requiring less frequent suctioning, his nose is a little faucet, particularly when he's laying on his tummy. The secretions are still very tenacious and sticky. But, in spite of this all, it did feel like James took some baby steps forward.
We were able to see James come down on his oxygen requirements and self-recover from some desats. There was no cliff jumping to be had. This was the first day it was possible to leave him to sleep in between chest physio treatments, turning, suctioning. When the babies are the sickest, they need the most handling, so it's almost impossible to truly leave them to rest. Today, James really got to rest. Even though he is on some hearty doses of morphine and midazolam, the last 24 hours have seen James wake up and show interest in tracking movement. Awesome!
Tomorrow will see James turn one week older. He is 8 weeks of age corrected.
January 15 - Day 136
So today was a better day for James. We say that cautiously. It's not like he was a rock star but it feels like he has maybe stopped moving backwards. He had good gasses, his O2 requirements came down to around 50 percent at times and when awake, he was somewhat stable.
Despite bringing down his O2 requirements they did go up again on his ventilator settings so he is probably at the maximum settings on his ventilator right now. Not much of a cushion for him to go backwards any further. James seems to specialize in getting to the brink and then turning things around.
On day 1 they told us to watch your baby, not the numbers on the screen but as we have become armchair neonatologists it is hard not to look at the numbers. Looking at James yesterday and today he has had some calm awake time looking at us. While he looks tired and sick, he looks better. He needs rest but he needs his tube suctioned too in order to get the gunk out of his lungs.
Rounds this morning were big with a lot of things discussed. Different doctors can have different philosophys and approaches and sometimes at rounds there is a healthy debate and discussion.
Everyone remains concerned for James and it is clear that so many of the doctors care deeply about James. He is a special boy.
It seems that the plan now (as always) is to get James stable, allow his lungs time to heal, so he can start moving forward again and get off the jet. That's what we hope to see happen in the days ahead. The problem is that being on a ventilator can make you worse instead of better. James #1 problem (as always) are his lungs. They are fragile, damaged, wet and full of phlem which shifts around clogging up his delicate alveoli which perform gas exchange. Too bad they can't just go in with a shop vac. He can't cough it up either while he is intubated so the only available methods are rotating him every few hours and suctioning his tube as often as possible.
The doctors feared last week that James would get stuck on the ventilator spiraling downwards. That is exactly what has happened. The last time we were in this situation it was the steroids that saved James. He had 3 days of the steroids last week with no effect, but that wasn't surprising as he was at the height of his respiratory infection.
So that's where we are at. Dangerously close to the edge but hopefully turning a corner. We're slightly less worried than 24hours ago, but still worried about James. So many of you have written to us or sent us a note saying that you are thinking of and praying for James which we appreciate.
January 14 - Day 135
We slept very, very little last night. Let's just say profound worry took over, and Sean and I processed our greatest fear over and over and over again in our minds. It was so hard. Today, I rushed up to the hospital, and Sean took the girls to school, then joined me up in South 2. Rounds were very late for us today, so Sean left to go to work. From the moment I entered the nursery, I was on edge. Emotional and scared for what the day would hold, so afraid that today would be worse than yesterday. But as the day wore on, it appeared like it may have been a day with more positives compared to what we've been seeing.
That being said, it was still a day where ALOT happened, and tonight, we just aren't sure what to make of it all. James ran a bad blood gas this morning, So they upped some of his jet settings by adding in a 'booster'. This booster tricks the machine into thinking it has more pressure, and in turn, the baby gets more. It's just a small little tube attached to another tube. Here I thought it was some very obvious magic box that attached to the outside of the jet. James already had one booster, so they added this second one. By the time they ran his next gas, his CO2 had come way down. So they left in the tricky boosters, and decreased some other setting. James was much less dippy in terms of saturations - we saw less cliff jumping today - and he required less oxygen for the day than previous. This was good! He got down in the 40s for oxygen %, but also had to be boosted up to 100% for handling, turns, and some suctioning.
The doctors' during rounds this morning were very clear that they wanted James to be awake as tolerated, not paralyzed, and he needed to be suctioned a lot. This has been a consistent message coming from the docs in the PICU and the NICU - if James doesn't clear the secretions, he won't get over this virus. They are thick, lung plugging secretions. So the rocuronium was stopped, they upped his sedation, and James was moving and even awake for a while. I felt a connection to him as he looked at me. His little eyes found his mommy, amongst all of the people, masks and lines. It was good to see James again, even if only for a short time. The downside of the suctioning today was that the irritation caused some bleeding. Occasionally, we've seen some pink-tinged secretions coming up his tube after being very agitated, but today, we saw bright red, a few times. Cue the worrywart. To add to the worry, James' diapers showed some bleeding today too. So blood work was collected, and James had an x-ray of his abdomen. I'm still waiting for the final report. As if this wasn't enough, the sample of secretions they sent to the lab yesterday came back positive for bacteria, so Respirology recommended the team start James on antibiotics. So he's started a course of those, with the hopes that this was caught early enough. Always on our toes. All of this intervention is keeping James alive, and for that we are eternally grateful. It's also turned him into a greater host of germs, bacteria, and risk.
This afternoon, after James had successfully slept soundly for two hours, my outlook was brighter. I felt like maybe things were going to change. I had a nagging question though and needed an answer. Yesterday, on a few occasions, our fears were validated when various individuals told us that they too were worried about James. When you hear that from a professional, it shakes you up. Hence our sleepless night. So today, I asked one of the physicians we trust, point blank: "do you think James is going to survive this?". She passionately replied, "I have no doubt in my mind that James will get through this". There are no guarantees, but as the mommy of this fragile little baby, I needed to hear this, no matter which way her response had gone. I asked, "if I had asked you this yesterday, would you have said the same thing?", to which she replied "Yes.". So, for the first time all day, I felt myself breathe.
On my way out of the NICU, I ran into one of the docs we know there and he asked me how I was, how James was. We had a great hour-long, candid conversation about all things James, parenthood, and NICU-life. But I slowly found myself unable to catch my breath again as he told me what he would be considering if he was in charge of James right now. I drove home in tears, feeling just as much worry as I started the day out with. These are hard, emotional days. We just so badly want James to be ok - whatever ok is.
January 13 - Day 134
Today was another day of moving backwards and wondering when James is going to turn a corner. Last night was very stressful as James was sitting on 100% oxygen for a long period of time. When James desats, they often turn up his oxygen. When you are at 100% there is nowhere left to go. There was a tiny bit of room to go on the jet settings so they upped his settings, knocked him out with the paralyzer drug and turned him on his tummy. That resulted in him coming down to about 85% oxygen by about 1am.
Today was more of the same, although there was a few positive results. One positive thing was that he had another cardio echo-gram (heart ultrasound) that showed the pressures in his lungs have remained good. That is a relief. At one point James was down to 50% oxygen today as well. He had a chest x-ray at 5am (which was really bad) and one this afternoon that showed some improvement. But much of the day today was spent on 80% oxygen and there were lots of bad blood gasses.
It has really sunk in that we are back to September and October. We are likely in for a long road to get back to where James was on January 4th. But right now it is hour to hour and we just want to get through the respiratory infection. That day should be coming soon but we've been thinking that since last Wednesday.
The girls were playing one of their favourite board games last night called CandyLand. In CandyLand you try to get your piece to the finish and sometimes you get a picture card that sends you forward or backwards. It feels like James had almost reached the end when last Monday he drew the cupcake card and got sent back to the start. Claire is usually good at rigging the deck so that the coveted chocolate truffle card comes up on her turn (sending you close to the finish). If only James could pull that card.
January 12 - Day 133 We thought we turned that corner....
Today was a much less stressful day, all things considered. James has had two nurses assigned to him since lastnight because of his high suction needs. It is hugely beneficial for them and for him. As soon as he needs help, he's got it.
James' oxygen requirements were up today around 80%, but the doctors felt that this was understandable because of the collapsed left lung and upper right lung. The dexamethasone steroid that he was started on last week was stopped as it hasn't helped him in the breathing department. It's disappointing because back in October, the dex was the miracle we needed. Right now, it just wasn't in the cards. The docs did say they weren't sure it would work in this acute infection situation, but we hoped it would. This morning, the neonatologist acknowledged that she feels James is a ways away from being able to come off the vent, but that he was stabilizing.
In spite of it all, he was very settled. So settled they we able to discontinue one of the sedatives he was on, leaving just two left. Suctioning appearing to be doing the job to remove the secretions that are bogging down his lungs. His chest xray this morning showed no improvement from lastnight, but the team felt that they were on the way to improvement, so we stuck with the plan of frequent (as often as he needs it) suctioning, laying on his tummy, and chest physio twice daily. James loves that chest physio. He has always loved being patted, so the rhythm of the patting settles him to the point that he can tolerate it. It has a great effect of loosening his secretions, and that is the goal right now - to bring them up. Overall, the atmosphere was lighter in there today. We felt optimistic.
Tonight though, as I sat down to write today's entry, Sean texted me with an unexpected line. "Not good here. On 100% and still desatting." After a text dialogue back and forth, I'm waiting for an update.
One week ago tonight, I was a nervous wreck about James going in for surgery. I was worried about him having to be intubated, and worried about what the days following would look like. Not at any point in those worries did my mind ever go to the reality of how our week truly unfolded. James is critically ill. He caught a respiratory virus that has pushed his body to the limit and it is frightening. As I read through his chart notes lastnight, it was scary to re-live it in print form. Our sweet baby James needs a break. If only our love could be his oxygen, he'd be set for life.
January 11 - Day 132
Today was another hard day. This morning at rounds one of the residents who has been taking great care of James all week said that our goal is to get him extubated and in order to get there we've got to get James off the "paralyzer" medication. So they made the decision today to stop giving him this medication. This meant that James woke up, opened his eyes for the first time in 4 days and probably realized that life is not as good as the last time he had his eyes open. It was good and necessary for James to get off the paralyzer meds. But it was a rough day.
James was moving around and was coughing (or more like gagging given that he is intubated) and so fluid was coming up constantly in his tube. His nose was running. They were suctioning him constantly. His oxygen requirements went up considerably. He had physiotheraphy come twice to give him a bit of a chest massage to try to help to inflate his right lung which has collapsed in some parts. This physio helped to move fluid in his lungs which added to the constant suctioning. It is good that James is coughing up this fluid as any of us would do if we have a cold. But it is tricky being intubated. Everytime they suction they need a respiratory therapist there (who gowns and masks when entering the room) and they have to put the jet on standby. James didn't really get a break today. He has a 1 on 1 nurse and he almost needed a 1 on 1 respiratory therapist today too. And they were busy today with 59 other premature babies to look after - including ones born a few days ago.
James had a chest x-ray later in the day and now his left lung looks collapsed. It feels like we have ended the day in worse shape than we began, but perhaps today was an inevitable day that James had to get through if he is to get himself extubated. Hoping tomorrow will be a better day.
January 10 - Day 131
These have been really hard days. This week was unexpected. All week we've been wondering if we have seen the worst yet. James has been knocked out and loaded up with meds for the entire week.
Today was a lot like the last few days. Somewhat stable. Some good and bad blood gasses. Ventilator settings going up and down accordingly.
James has two major issues which may be interrelated: pulmonary hypertension and a respiratory infection. The pulmonary hypertension is very serious and all week the docs have been very concerned that James has a lot of pressure in his lungs. To try to relieve this they have been giving him a medication that they told us is essentially viagara, and it seems to have worked. This afternoon, we were given some good news that his echo cardiogram (heart ultrasound) was much better and the pressure in his lungs seems to have gone down considerably. That is really good news and had Joanne in tears.
On the other front, the respiratory infection, we've been told that typically these run courses of about 10 days with days 4 to 7 being the worst. We keep hoping that James is going to turn a corner and show us the bad days are behind us. That hasn't really happened yet. Some people get a cough that doesn't go away for several weeks and it is possible that James has something like that in his system. It is possible though that he's just getting over the hypertension so maybe things will pick up.
The plan is to try to get James extubated by Monday. He needs to get off the ventilator. He needs a good weekend. Everyone at the NICU are doing their absolute best for James. He is a special little boy in there and has captured the hearts of many of the staff in the NICU. He has captured the hearts of many people outside the NICU too. He is a tough little kid. We have faith he is going to pull through these tough times. We keep looking at that photo that is posted below on the Jan 4th entry in the green shirt crawling on his mom. We can't wait to have that little boy back.
January 9 - Day 130
Today James has been generally stable. We didn't see any great improvement, but we also didn't see any great drops. While his heart rate was a bit lower at times, and his blood pressure was a bit higher, his oxygen saturations stayed relatively consistent on 33% oxygen. Unfortunately, the blood gas that was run for James at 3pm was slightly high, so they tweaked some of the ventilator settings and are repeating a gas right about now.
Everyone is staying close to James, watching and waiting to see how he responds. After rounds, one resident has been sitting directly across from James' room all day. There are many intravenous medications infusing into his little body, in an effort to balance all of his needs as he fights his way through this infection. A lot of the medications are working to correct deficits as a result of other very necessary medications. He has been deeply sedated, and after very little movement, James is given another dose of the paralyzer med. I was able to see his eyes open very briefly today, but he was quickly put back to sleep. The slightest movement leads James to desat, so the doctors want to limit that obviously. The great downfall of the paralytic is that James is not able to move out any of the secretions (or gunk) building up in his lungs, and his stomach is moving less, so he can't digest anything. This is the main reason that James is being fed through his IV. Today they plan to start up continuous feeds through the tube in his nose down into his stomach, but just at a level called 'trophic feeds', at 1ml every hour.
The PICC line they put in yesterday was a hot topic today. Not only are they concerned that it's going into his left sided superior vena cava, but today it became blocked for a short time while one of the nurses was trying to pull it back a bit. Panic ensued, he had an xray, the infusions started running again, and disaster appears to have been averted. This picc line may or may not get pulled in the near future. It may be replaced in a new location, or the team may just use the numerous peripheral IVs that James has elsewhere. It really depends on how quickly her recovers.
Seeing James today, and then looking back at photos of him from just a few short days ago is nothing short of painful. He was bright, active, and tracking EVERYTHING. The doctors appear confident that he'll get back there. We just need to get through this very trying time first.
January 8 - Day 129 - We haven't seen the worst of it? Part Deux
Today started off and finished up ok, but there were some low points in the middle. Last night James heart rate was dropping lower than it's usual rate - a side effect of one of the meds he was on. To combat that he was given something else which would have other side effects. The morning rounds included a lot of discussion over tweaking the various medications James is on.
Because he is on so much stuff - and probably will be for the next few days, they wanted to put a PICC line in. This is a microscopic tube that they insert into one of his veins and then push it through so the end is close to his heart. They then use it to deliver most of his meds and fluids. I had forgotten that James has a rare anatomical feature where his superior vena cava is on the other side compared to most people - or he has two - or something like that. Anyway, the doc who put it in didn't know this and so there was some concern over whether it was a good idea to use the PICC line - which eventually they decided they would use it.
The low points of the day came in the early afternoon when James ran some very bad blood gasses. The blood gasses measure the Ph level of his blood and the amount of CO2 (and other things). This tells them whether they are ventilating James properly or well. They want the CO2 level to be between 40 and 60. The lower the better. Over 60 Is bad. Over 80 is really bad. James ran a blood gas at 91. So there was concern and they changed some settings and ran another one which came back at 103. Yikes. James has never had a blood gas this bad. They changed the settings again (adding more support) and ran another gas, which came down to 71, Better, but still bad. This was a sign that James wasn't doing well.
They decided they would start James on Dexamethasone again. This is the scary miracle steroid that changed his life back in October and got him off the jet after 55 days. They were worried that James might get stuck on the ventilator for weeks and weeks if they didn't do something a little more drastic. He needs to get off it as s soon as possible and get back to breathing like a big boy. James isn't a neonatal anymore - he is over a month past his expected due date. Whether it was the dex working already (unlikely) or just James coming around, by 8pm he was down to 30% oxygen, was saturating at 99 percent and they ran a blood gas and his CO2 was 32. A huge relief and a positive sign that we needed.
We don't know if tomorrow will be another bad day or if the worst is behind us. Hopefully James is on the mend.
January 7 - Day 128 - We haven't seen the worst of it? Part One
Evening update: James finished the day in a better, more stable place, compared to this morning. Since about 4pm James has been stable. The settings on his jet ventilator have gone up throughout the day (ie more support) but his oxygen requirements have come down. We are going to bed slightly more optimistic that James will pull through this. He needs to have a good night tonight. It would be great if the worst was behind us but time will tell. It is hour to hour.
After James was transferred to the jet ventilator this morning at rounds, much of the day was spent tweaking his settings and running blood gasses. He also had a chest x-ray and two Echo's (heart ultrasounds). Things looked pretty bad in the morning and through into the early afternoon. His Jet ventilator was set nearly on the maximum settings, his blood gasses were bad and he was on 75 percent oxygen. That is very scary as for the first time, I was asking what would they do if they max out the ventilator settings and are giving James 100 percent oxygen and he is still desatting. Let's just say hopefully it doesn't come to this.
Yesterday there was talk of extubating James as the best way for him to get better. Instead, they opted to keep him intubated, knock him out with drugs and essentially take over James. It's the NICU cadillac treatment: 2 kinds of pain killers, IVs, lasix, a catheter, an arterial line, the "paralyzer" drug, x-rays, ventilation, blood transfusion, blood gasses, all sorts of fluids going off to the labs and a whole lot of attention. The last time James had an infection I remeber the neonatologist saying, "when a baby is sick, I am taking over". Using all the tools at their command they essentially put James into a coma and set the machines to do everything. The idea is to get James stable as he enters the worst days of the infection and allow James to use every ounce of energy to fight the infection and none of his energy for things like breathing or being awake. Getting everything where they want it to be takes time and constant tweaking and that's what today was for the most part. But there was very little margin for error.
As much as I would have preferred yesterday that the voices prevailed from those who wanted James extubated and prescribed cuddles for recovery, I think it is pretty safe to say that today showed us that they made the right call giving James the cadillac treatment, as invasive as it is. That is a perspective that we have learned over the last four months. The nurses, doctors and respiratory therapists working today were absolutley amazing. By dinnertime James was down on about 40% oxygen and was saturating well. As long as they suctioned his tube every 30 minutes or so and as long as they kept knocking him out with the "paralyzer" drug every time he twitched his toes, he remained very stable. James was, all things considered, doing OK, certainly better than in the morning. In the grand scheme of things, stability means that oxygen is going to the brain, and so there is less likely to be any long terms effects to James as he fights this infection.
Last week, when things were going so well, and Joanne and I were talking about James' homecoming, we had a friendly 'disagreement' over how much James would need to be sheltered from the germs of the real world. One of us, let's call her Joanne, thought that James will essentially be a "bubble boy" who wears kleenex boxes for slippers and only steps out of the house if it is to go to a doctors appointment... at least until he is 40 years of age. The other perspective, let's call it Sean's, is that it is fine for James to be crawling around under the bleachers of a baseball diamond eating the dirt as that will help him build up an immune system. Seeing James go from breathing on his own and then, within a span of 3 days, catching some bug that would have given us adults a mild cough, and it sent James onto the jet at 75 percent oxygen, has probably made Joanne's perspective the one that is more likely to prevail.
Morning Post by Joanne: James went to the OR just over 24 hours ago, and he came back to us a very, very sick baby. Since he returned to the NICU, the goals have been to keep James as stable as possible. With chronic lung disease, pulmonary hypertension, and parainfluenza virus (bronchiolitis) taking hold, there is little room for error. James had a very unsettled night. I spoke with fellow on duty at 1:00am, and he was keeping his amazing nurse very busy. His blood gases were bad, with elevated carbon dioxide levels, he spiked a fever, and he was having bradys and desats everytime he moved. His chest rattles when we touch it. His right upper lung is collapsed. He was given Fentanyl for sedation and two doses of the medication that paralyzes him. The goal is to ventilate at the most optimal level. With that, this morning we experienced our biggest rounds yet - there were no less than 6 respiratory therapists on hand, 4 neonatologists, 2 pediatricians, fellows, residents, nurses, and us. The decision was made to switch James to jet ventilation, and use some strong sedation to keep him calm, asleep, and settled. He will have a chest xray and echocardiogram this morning. He went back on nitrous oxide last night as his blood gases were so bad and he just wasn't responding as he should have been. Overnight, James also got an arterial line - after four attempts. This allows the team to continuously monitor his blood pressure, along with an easy access to blood work. The last arterial line James had in lasted less than 12 hours, so we hope this one can stay the course.
Today, James' room is dark, filled with equipment, people, and the hum of the jet. The doctors have told us that we are just at the beginning of this virus, and the worst is yet to come. The next 2 days should see the peak of the virus, and then hopefully we'll see some improvement.
January 6 - Day 127 - No Surgery, Pulmonary Hypertension Instead
Today's hernia surgery was a bust. James went into pulmonary hypertension in the operating room when they were trying to give him the general anesthethic. In other words, his lungs decided to shut down and tense up and so the surgery was stopped before it could begin. James is ok right now, but he is back in room 41 where he began, in an isolette and hooked up to a ventilator and getting Nitric Oxide to get him through this crisis. He is basically back to where he was on day 2. He even had the same nurses as he had during those early days. Not the day we expected, a strange kind of deja vu, but James will pull through this.
The day started out fine. Joanne was at the NICU at the crack of dawn and James had been off food since 4am. He was awake, looking around, content but he knew something was up. After 9am they wheeled him down the hall to the surgery suites and we kissed him goodbye. About an hour later they called for the neonatologist saying there was an issue. The surgeons then came back and explained what had happened.
They intubated James (ie stuff tube down his throat and a ventilator machine breathes for him as he was for the first 55 days of life) so they could give him the general anesthetic. James blood pressure was dropping and so they stopped. Cardiologists were next door and came over and did a cardio-echogram (ie heart ultrasound) and confirmed James was in pulmonary hypertension. This means the blood vessels in his lungs were tensing up which puts great pressure on the heart which is trying to send blood to the lungs to get oxygen. They gave James Nitric Oxide to rescue him and open up his pulmonary arteries. They called off the surgery, which was not critical and can be done later. James' lungs were not ready for a general anesthetic. This caught everyone by surprise.
One doctor explained the situation of James lungs as like a pot of boiling water. When water is between 0 and 90 degrees it might be still and look fine. When it reaches 100 degrees it starts bubbling and boiling like mad. James' lungs were like 90 degree water. You don't really see an obvious problem with them but put some strain on them and it doesn't take much to send them over the edge. That's what they learned today about James. and his lungs He has progressed so far it caught people by surprise. Three days ago he was breathing with no support. Thankfully, going into pulmonary hypertension happened in the most controlled place possible with some of the best doctors in the world on hand.
So James was wheeled back to the NICU to the front room where he began. He is stable and doing fine. They are weaning him off the nitric oxide which they hope to do by dinnertime and possibly extubate him soon after and maybe even get him back on high flow by bedtime. He is having more cardio echograms. Today was surely a setback for James but it could have been worse. How quickly James gets back on track we will see in the days ahead. He won't be doing the hernia surgery anytime soon unless it becomes critical. Maybe they will wait until he is one and we will just watch it when he gets home. His lungs have to be good enough to handle going under a general anesthetic.
Joanne understands what is going on much better than me. She has worked on a respiratory medicine floor (ie lungs) and a cardiac medicine floor (ie heart). As a result she seems much more worried than me about what happened today. But there doesn't seem to be any permanent damage done today, just a reminder that James' lungs are so very fragile. James has done so well despite having such crappy lungs. They will get better with time.
James looks like a monster inside the isolette. The photos don't do it justice. But if you look at the photo from around day 4 when I had my hands around him and compare it to today, it is like night and day. He has grown so much.
On top of all this, one of James' buddies from the room he has been in for the past month has come down with something and they are worried about a possible respiratory virus going around. So once he comes off the nitric oxide he is going to an isolation unit (ie private room) out of an abundance of caution. What a day.
Update at 7pm: It turns out that a swab taken today from James' nose has come back positive for Parainfluenza Virus - a respiratory infection. This may be the explanation for today. It may also explain James going back onto high flow. James has been moved into an isolated suite (like a private room) where lots of precautions are taken (gowns, gloves and masks). We have to let it run its course, and watch James. He could be through the worst or the worst may be yet to come. The neonatologist on today told us that we just have to take it day by day. There is no real treatment. Poor James. This was not the day to discover a viral respiratory infection.
January 5 - Day 126 Surgery in the morning
Tomorrow morning James will go on his second road trip, this time to the operating room. James is first case up for the hernia repair that is known to be a routine surgery. We have great faith that James will come through with no complications to his surgical site. But, after a weekend of desats, bradys, and spitting up, we are going to bed tonight feeling nervous about James having to be intubated for surgery. The hope is that he'll be easily extubated post-op and come back to us with high flow. He's a little trooper, so hopefully he's up for the challenge.
His weight is up to 3600grams, after 3 days of staying the same. He had a restful day with one of our amazing primary nurses. I only attempted to feed him once this morning, and after a big brady and desat, called it a day. James needed the rest to prepare for tomorrow. We're not sure when he will have his next attempt at breastfeeding, but after a few days without, James will likely show some eagerness!
January 4 - Day 125
Today was a day of setbacks. Something is up with little James. He was doing great until around noon today when during his noon feed he would have these repeated quick heart rate dips (bradys). They were so quick the numbers wouldn't change but the lines on the screen would go up and down. This would then be followed by a desat. He also had a few spit ups which is not unheard of for James but not typical either. They were scratching their heads as to what the issue was and what to do about it. They took out his feeding tube and put it back in thinking that was the issue. Eventually, at around 3:30pm they decided to put James back on high flow to see if that would resolve things. At first it appeared that it did resolve things - James was satting at 100% but then Joanne noticed James was accidentally given 35% oxygen so no wonder he was satting at 100%. Later on he was dipping again. Today was the first day in a long time where James has moved backwards. Hopefully it is something temporary and he gets back on track. Going back on high flow is not really a big deal in the grand scheme of things.
January 3 - Day 124
Well look at James! Off the high flow and proving he can do it! The high flow that he has been on for the past month is attached with Velcro. The scratchy side is taped to his face. That's the white stuff you see in the photo from yesterday. The fuzzy end is then attached to the high flow prongs, which are no longer in the picture. Yesterday they kept the tape on his cheeks in case he had to go back on the high flow. Today those stickers came off, which is a sign that he has made it.. James is a free man. He has passed breathing 101. James had some dips today but he held his own and remains off breathing support. For the first time in 124 days, the RT's (respiratory therapists) don't have James on their patient list!
This morning James had his infant hearing test as well. Claire and Audrey had this test within a day or two of being born. They had to wait for James to come off breathing support before they could do the hearing test. He passed with flying colours, which is great.
Today was a great day for the most part, but it was a reminder that James can't be pushed too hard. With James off breathing support and having done well over the past two weeks with breastfeeding, it was decided to push James ahead on the feeding front. For the past two weeks the goal has been to try to get James to breastfeed twice a day - no more. James feeds every 3 hours, meaning they pump the breastmilk into his stomach via the tube you see taped to his chin every three hours. So Joanne usually tries breastfeeding at 9am, then noon, etc.... Somedays it works in the mornings. Other days James is fast asleep and the morning breastfeed attempts are a bust but then he feeds at 6pm or 9pm. If he does really well (ie breastfeeds for 20 - 30 minutes), then they don't pump anything into his stomach. If breastfeeding goes OK (ie feeding for 5 or 10 min) they often give him a half dose of milk pumped into his stomach. And if it is a total bust they just run the regular feed through the tube as planned. The goal of course, is to eventually get to a stage where James can breastfeed all the time (whenever he is hungry) and not need to have milk pumped into his stomach via the tube. Over the past few days James has been sleepy in the morning and partying hard (and ready to feed) in the afternoon and evening.
So today they tried not giving him his feeds every three hours so that he would get hungry and try to breastfeed on demand. This didn't go so well. He ended up missing a feed and this, in combination with the fact that he's breathing all by himself (and so having to work harder) likely contributed to some late afternoon dips and crankyness. He was tired and hungry and has had a lot of action over the past few days. We all know what babies are like when they are tired and hungry. It was a reminder we have to take baby steps and so James is best dealing only with one change at a time. Coming off the high flow is a big enough deal that changing up the feeding should probably wait a few days at least. The fact that James remains off breathing support is amazing. He needs a restful weekend as his hernia surgery is set for Monday morning.
January 2 - Day 123 - Big Boy Breathing
As you can see from the photo, James is excited to tell you about the big news from today. There are two big news stories. First, James came off the high flow today and did really well. He is breathing unassisted like a big boy. Way to go James. It only took four months or 123 days. We are so proud of James.
The other big news story is that the repeat pipecolic acid test came back and this time it was normal. More good news. To refresh your memory, back in September, when James was shaking (something he doesn't do anymore) they sent a blood sample to a lab in the US to test for his level of pipecolic acid. In October, that test came back showing he had an elevated level of pipecolic acid in his blood. This, along with some other things, led the doctors specializing in metabolics to believe that James had a terminal, genetic illness called a peroxisomal disorder. They then ran another test to confirm that, which, in November, came back negative, meaning he does not have the illness. So then they decided to repeat the pipecolic acid test - I suppose partly out of curiosity. Today, that came back normal, meaning his pipecolic acid was no longer elevated. What does this mean? I guess things are as they should be. I don't think it really matters anymore how or why he had the elevated levels on the first test. But hopefully James' case has taught the doctors a valuable lesson in terms of diagnosis and that a future family will not have to endure the stress and devastation that came with their almost certain belief (which turned out to be wrong) that James had this terminal illness. My own un-scientific theory is that during those early days, when James weighed less than 1000 grams, when he was supposed to still be in his mommy's tummy, but instead was in the outside world, battling infections, on IVs and all sorts of medication and his little body dealing with all this, is it any wonder he is going to have some of his levels out of whack? But the doctors look for a scientific explanation for everything: if x is elevated then it must be because of y. But I think there is probably more that they don't know about the human body than what they do know. And it is such a complex intricate system that there are usually several possible explanations for something and no real way of knowing what the right answer is. Don't get me wrong, I'm not knocking the medical doctors who have saved James' life, I'm just saying a lot of what they do seems to be more art than science. And you can't expect them to know everything. In any event, after 4 months in the NICU, James seems to have found his groove and beaten the odds. He is one very special little boy. You don't need a PhD to know that.
January 1, 2014 - Day 122
Happy New Year! On this first day of the year, we won't make any resolutions. Instead, it is our great hope that this year brings James good health and protection from the elements of life in the real world.
This year ahead we will watch him grow, engage, and explore. He will discover that the world around him is filled with sound, light, sun, rain, warmth, and so much love. James will come home to a house of 3 Mommies and one Daddy. He will be wrapped in the same blankets that wrapped his sisters. He will be kept cozy and close in the cuddly wrap. He will one day be bounced around endlessly in the Ergo. He will bonk himself in the face with the Winkel. He will help us erase the difficult NICU journey from the forefront of our minds. We won't ever forget these days, but we will have new ways to define our boys' life.
Today James is 4 months old. In the NICU world, we call him term plus 5 weeks and 4 days old. You may grow tired of us saying "Well, he's ____ months old, but really, he's _____ months/weeks corrected". It's a mouthful for us all. Come November 22, 2014, we'll stop saying that.. He had long cuddles with both Mommy and Daddy today, and fed like a great champ at noon. His weight is up to 3450 grams, and he looks so good!
December 31 - Day 121 New Year's Eve Reflection by Mommy
Today we say goodbye to 2013. A year that started off with many trips to the ski hill, skating rink, and most importantly, a third pregnancy. We were so excited for our family to have a new baby to love and cherish. By June, our year started to become remarkably stressful. Then, we were so very blessed to welcome James, our sweet boy, on our anniversary. From that day forward, 2013 became a year that will be remembered as one of fear, worry, longing, and delayed celebration. Today, we finish off this year filled with hope, pride, and optimism. From 1 lb 10 oz, to 7 lbs 7 oz, James has come so very far.
We are so very thankful to everyone who has supported us through these last 121 days and beyond. The notes, visits, calls, food, gifts, and continued love have helped to make 2013 the best it could be. During our pregnancy and this NICU time, our family has been so well cared for by the amazing crew of physicians, nurses, and support staff, who have made every bit of difference in our life, and James' life so far. They have all been so kind, compassionate, and patient. We are eternally grateful.
His sweet sisters recorded a special countdown message for him, after we took in a Newfoundland-time countdown at Robson Square skating rink. James celebrated this fine New Year's Eve with some great nursing, a bubble bath, and a giant all-night sleep. He's ready to take on 2014.
December 30 - Day 120
Today James had a physiotherapy assessment. While it was done slightly prematurely as James is still on high flow breathing support, it was a good thing to watch and take away some ideas and areas to work on. James is now 5 and a half weeks corrected, so it's important for us to see how he's doing with his physical development so far. Many premature babies, in particular micro preemies like James, can really struggle to meet expected goals. The physiotherapist was happy with what she saw so far. For instance, James is able to wiggle his fingers, without wiggling his entire arm. He's able to rotate his ankles without having to move his entire leg to do so. He is able to bring his arms to the middle of his chest and connect his hands. When attempting to roll him to his side, James is able to control his hips and arms to assist his body rotating to his stomach. It was reassuring hear from the physiotherapist that things look good. The assessment was cut short by a bit of reflux, so James will have the entire assessment repeated after he's recovered from his hernia surgery, which is next week. Upon discharge from the NICU, James will be followed by two groups: Neonatal Follow-up Program at BC Children's Hospital and the Infant Development Program (which will provide numerous different supports in our house, such as Physiotherapy, Occupational Therapy, and much more if needed).
These days, James is having a great time tracking movements of everyone around him. His nurses often comment on him watching them at night when they assume he's sleeping. He loves the new mobile Santa brought for him - it holds his attention for a long time!
The last two days, James has been sluggish in the feeding department. Today, after failed attempts at 9am and noon, James was wide awake and rooting for 6pm. Huge success with 45 mins of great feeding. He didn't need a top up either! At 9pm, he was overeager, which led to a few bradys, and after feeding so well only 3hrs earlier, he fell asleep after 10mins. It was a surprise that he stayed awake to try again!
James is a content, alert little boy. He has a heartbreaking cry when gas is getting the better of him, but when he's awake, he's most often quietly looking around, with the sweetest, tiniest pursed lips. He has a temperament similar to his sisters who were happy little babies. At this stage, James is able to fall asleep on his own - sometimes with his soother assisting, but most often, he nods off after checking out his aquarium or mobile. He loves to be patted, and he loves his soother. It will be interesting to see what kind of personality James leaves the NICU with. Quiet? Settled? Irritable? Time will tell.
December 29 - Day 119
James had a sleepy morning but then the whole family arrived after dinner to give James a bath and we took over a hundred photos. I've posted a whole bunch of them on the right.
December 28 - Day 118
James was in good form today. He was sleepy in the morning, hanging out with Dad and then did his full 3pm feed by breastfeeding. No top up needed. Way to go James! Over the past few weeks James hi-flow setting has been weaned down from it's original setting of 8 to 7 then to 6 then to 5 and it is currently at 4. I'm not sure why there is this hesitation to just take it off (which often happens after 5), instead they are talking about dropping him to 3. Either way, this is very little support which is great.
December 27 - Day 117
James had a fine day of sleeping and rolling. Yes rolling! He was a little moving machine in his crib today. The nurse on the night shift prior made his bed without the little nest (a few blankets rolled up to act as a containment barrier - which is the best shot at mimicking the womb for a baby no longer in utero), and it turns out that nest provided James with quite a bit of stability. Between being swaddled and then in his nest, James had no where to go. But today, James was all over his crib! He was rolling from back to right side, and numerous times he was found pressed up against his crib rails, perpendicular to his aquarium, and almost at the bottom of his crib! Our little mover and shaker! It's a great sight to see his little body exploring movement. From the early days worrying about self-extubation with the slightest movements to now - he's come so far!
He had two fantastic feeding attempts followed by great little burps. The occupational therapist came to see him and is pleased with his feeding progress so far. Upon assessment by the pediatrician on duty today, we learned James' growth is now on the growth curve - he's hanging around the 3rd to 10th percentile, but continues to steadily grow. The doc had also suggested that perhaps James' failed feeding attempts on the 24th and 25th could be blamed on the decrease in high flow from 5L to 4L. This could have made him work harder to breathe, and in turn, sleepier.
James and I had a nice visit with one of the perinatologists who so closely monitored my pregnancy during August. He's popped into the NICU a few times since James arrived, and today he was welcomed by James' hearty cry.
December 26 - Day 116 - Sleepy Boxing Day
Today was a sleepy day for James. That meant that Joanne's attempts at a 9am and 12noon breastfeed were a bust. James didn't wake up even when his sister Claire was holding him or reading him the book she made for him. James had a bath in the evening however and that got him up and he attempted a 9pm breastfeed after the bath. There is no pattern to James' awake and sleepy time. He seems to have days of being very awake, then days of being very sleepy. I find James' weight is up after these sleepy days so he's obviously growing on those sleepy days. He is approx. 7lbs 4oz now.
December 25 - Day 115 - Christmas Day
Well Santa didn't forget James today. He brought him a new mobile and Sophie the Giraffe. There was also a fairly big production at the NICU. Parents of past NICU survivors and non-survivors showered the kids with cards and gifts and a large lunch buffet. A churchy group sang carols in the lounge too.
Claire and Audrey gave us a sleep in today until 8:15 - we were up before them! We made it to the NICU for noon and James had already had his morning awake time and was too sleepy to feed. Claire cuddled with James for a while as did Mom and Dad. All that passing him around during his feed led him to send it back up. But hanging out the 5 of us today in the NICU was nice. He also got to "face time" with the defrosting Torontonians.
James missed Christmas dinner but he was probably better off because he would have seen his Dad undercooking the duck big time, and then setting off the fire alarm trying to pan fry some pink slices. Next year will be much better. Merry Christmas James.
December 24 - Day 114 - James' First Christmas
Christmas is a time of joy... but it can also be a lonely and difficult time for a lot of people. This year there is both joy and sadness on Beatty Street. Sadness knowing that James is in the hospital while his big sisters, his stocking, his crib and his Mom and Dad are at home without him. But there is a lot of joy in knowing that we have our little boy back. I think the photo on the right with the caption "cutest little boy ever" says it all. It feels like a few times in James' life, things looked so very bleak. When we were 18 weeks pregnant and had an amniocentesis, and then at 24 weeks it looked like he wouldn't make it, then at 28 weeks being born, then those early days and the night we were awoken at 4am in the hospital, then the whole peroxisomal scare.
And now looking at and holding James (or Big Jim as one of the charge nurses calls him) at 7 lbs, in a crib, nursing from his mom, looking around. He's just like a little Sean or little Whillum. He's the best gift we could ever ask for. He is a wonderful little boy. And there is a lot of joy in that.
James spent the morning with his mom and got to nurse two times and Mommy read him the night before Christmas. But this Christmas eve we have taken some family time with our girls. Christmas eve mass, skating at Robson Rink, cheese and crackers at home with the girls drinking ginger ale in a wine glass and Claire scratching out jingle bells on the violin. James is in good hands with a great nurse tonight and one of his amazing primary nurses tomorrow morning. His stocking, made with love by Grammy, is hung beside his sisters. Santa won't forget this little boy and his sisters will bring his presents up to him tomorrow morning after they open their own gifts and eat cinnamon rolls.
Merry Christmas James.
December 23 - Day 113
We are quickly approaching Christmas Day, and James continues to progress. Today was a day filled with so much awake time and remarkable feeding. James is a great little breast feeder. He has a great latch and knows what he wants. Joanne is still only 'allowed' to nurse him twice per day, but for those two feeds, James does a great job! The talk tonight on rounds was about increasing him to 3 feeds by mouth, but the docs fear his lungs and body are just not quite ready for that. He is still on high flow - they decreased him to 5L this morning - and the most desaturations he has continue to be during feeding times.
There will always be differing opinions whether to feed or not to feed while on high flow. Thankfully, the Neo who has been on for the last two weeks is pro-breastfeeding while on high flow, so we were able to get started, but there are a few docs and others who think it's not safe. The great risk is aspiration of milk into the lungs. Joanne watches James' closely during feeds, and remains hopeful that we haven't entered a danger-zone by getting feeding started. Now, anytime James is awake, he is rootin' tootin', looking for milk. Needless to say, his soother had some intense use today! Claire must have given him a pep talk about how great it is to feed all day and all night long, because his feeding cues are all too similar to his biggest sis. But, if that's what James wants, that's what he'll get (when he's strong enough!).
Many 'NICU graduate' families have been delivering endless treats and cards with meaningful, thoughtful words as Christmas approaches. It is a welcome and heartfelt act of kindness! Today, Joanne walked into the parent lounge, and there was a table FULL of goodies. A huge amount of quality street chocolates and shortbread cookies were devoured! When life began to chart a new course for us in early August, we never would have thought James would still be in the NICU for Christmas. So as we settle in to the holidays, we'd be lying if we said it wasn't difficult. It is a time of mixed emotions. On one hand, we are having a great time with the girls as they light up our days with excitement and anticipation. On the other hand, there is a void knowing that our little boy can't be home with us. We aren't the only ones feeling this way. The faces and voices of the parents we've met in the NICU share a collective melancholy. The entire experience takes on a new meaning during this season that emphasizes togetherness when you are separated from the baby you long for. We'll all get through it, but there will be tears. The girls are accustomed to asking Joanne "mommy, are you crying because baby James can't come home yet?". Our little miracle boy. He'll be home soon.
December 22 - Day 112
James has now cleared 7 pounds and he had two more awesome breastfeeding attempts today. He was awake for most of the day so hopefully he will sleep well tonight. A great day for James. Thankfully, he is not in Toronto where an ice storm has taken the power down. We read that the two main hospitals are running on generators. James is at the point where I think he would be fine without power but those babies on ventilators, yikes, I guess that's why they have generators. Good thing they have such a competent mayor running the show. Anyone worried about Grammy, she is surviving on one bar of power for her iPhone, which she uses to refresh this blog page. And thanks to Pops outdoorsmen skills, she hasn't gone hungry, reports are that he was frying up bacon on the coleman camping stove in the backyard... Pops has been waiting a long time to get his Canadian citizenship, but if there was ever proof of being Canadian, that must be it.
December 21 - Day 111 - Up Tipp!
Baby James has been drafted as a future prospect for the 2030 Tipperary hurling squad. His contract, jersey and shorts arrived in the mail special delivery from Tim, Mary and James' second cousins in Ireland. As you can see from the photos, James was pretty excited to be wearing his new jersey. James is going to have to make the trip across the Atlantic however, if he is to become the next hurling star, as his Dad will be focusing on his NHL hockey career as he grows in the great white north. James is already exhibiting signs of toughness AND soft hands which suggests he will be a playoff goal scorer. So far, there is only one Cleary in the NHL and no Stynes'... yet.
Today was James' second day of attempting breastfeeding. Joanne was there for his 9am and 12pm feeds but he was conked out in a deep sleep so no action. Then I was up for the 3pm feed unfortunately when James decided to wake up and seemed to be ravenous to feed. Murphy's law as Grammy would say. But Joanne made it back for the 6pm and 9pm feeds and James once again showed he can feed like a champ. This is very exciting and good news because if James can get the feeding down, that will be his ticket out of the hospital. I'm hopeful that he may be coming home sometime in late January or early February. James oxygen saturations were absolutely stellar today. He spent nearly all of his time in the mid to high 90s on room air. I think he is ready to come off the hi flow.
Thanks to the Clearys for the gear!
December 20 - Day 110 - And We're Off...
Today was the snowiest day Vancouver has seen since James was born. While his sisters had a snow -filled home day with Daddy thanks to a school closure, James took to feeding 101 with Mom in the NICU. The hope today was to get James to breast, and see what he could do. After yesterday's great showing at the bottle, we know that James is capable of oral feeding.
At 9am, he was too sleepy to try, so he received his full feed via his feeding tube. Then, at 1130, Neurology came to do an assessment on him, and the resident was praised for her perfect timing! The hope was that her assessment would wake up James and he'd be in great form for a feeding attempt. So, at noon, Joanne tried again with James wide awake and he performed like the little star he is. After his initial ravenous attempts were met by a few bradys and a look of surprise, James found his comfort zone and managed a great 15 minutes of breastfeeding! He was on room air and his oxygen saturations were steady for the duration. He then spent the afternoon cuddling with Mommy, but didn't fall asleep. He must have been waiting for the next reward! Instead of being too tired, James was a little pro at the 3pm feed. He has a fantastic rooting reflex, and knew exactly what he wanted! For 25 minutes, James was wide awake, in a perfect state of coordinated sucking, swallowing, and breathing. There was no stress. It was a time of great ease and comfort - like Joanne and James had done this many times before. It was incredible.
This is something we so badly hoped James would achieve, we just had no idea if or when it would happen. It sounds easy enough. But for a baby who has to work to breathe and who has had such a tremendously difficult first three months of life, it's hard to predict how feeding will transpire. We've met Moms who work to establish feeding for months, so we know that we are just at the beginning of what will be a journey unto itself. We've been told that because James is our third child, success with breastfeeding is more likely, particularly because Claire and Audrey were successfully breastfed for so very long. Today, we celebrate this step forward, and BIG milestone. At 110 days old, and 4 weeks past his due date, our sweet baby James delivered a very cherished gift to his momma. It was a special day.
December 19 - Day 109 - Feeding Frenzy!
Today was a big day for James - his first attempt at feeding. There is a video posted below so you can see it for yourself! He tried a bottle this morning and drank 12 mLs. He was amazing! The docs were very impressed. He did have some brady's (heart rate drops suddenly) though so at lunch time he tried breast feeding instead. Again he did amazing! So for the next two weeks James is going to try breastfeeding at the start of each of his feeds during the day. They are keeping him on hi flow at all times, but it seems they are not as concerned about him feeding while on the hi-flow. I previously thought the feeding attempts wouldn't start until he was off the hi-flow. If he can do both at the same time, then all the better.
James and Joanne also had a surprise visit from her OB doctor who delivered Claire and was there right after Audrey was born. It was very special for her to come by and meet James. I remember something she said after Audrey was born. We had been through a lot of unnecessary stress and scares with both pregnancies (Claire and Audrey - but mild in comparison to what we went thorough with James). For example, they would see a bright spot on the ultrasound, which turned out to be meaningless, but they told us, at the time, it was a marker for down syndrome and put us in a "high risk" pregnancy stream. Anyway, after Audrey was born a healthy little girl, she said facetiously, something like 'if you guys have a 3rd baby, you should probably just skip all the screening and monitoring and just show up at the hospital when it's time to have the baby... save yourself the stress."
December 18 - Day 108 - The A Game
When James' sister Claire was almost 3 we enrolled her in soccer. They had a class for kids aged 2-3 followed by a class for kids from 3 to 5. Since Claire hadn't turned 3 yet, she was in with the 2 year olds. It was total chaos with 2 year old boys doing what 2 year old boys do; running around like maniacs not listening to the coach or their parents who were chasing them around all class. The 3 to 5 group however, was a hundred times better. The parents were on the sidelines, where they belonged, watching (or texting on their smartphones) while the kids listened to the coach running the drills.
Since Claire was a few weeks away from her 3rd birthday, and she seemed to be the only kid in her group capable of sitting still on the 'magic line' for more than 4 seconds, after her second class, we decided we would ask the coach if she could move up to the 3 to 5 group. So the next week at the start of the class, we asked the coach to move Claire up. The coach was reluctant to do this and said she should stay with her age group. Sure enough, right after asking, that class Claire was the maniac. She was having an off day and as I chased her around the field trying to get her to participate, with the coach watching on, it was a very humbling parent moment. It is easy to think that your kid is the greatest, when really, they are more like the next kid than not.
The point of this story is to say I had a similar moment with James tonight. James had a good day. He cuddled with his mom all morning, cuddled with a volunteer cuddler in the afternoon who then directly transferred him to Daddy. This evening, he had a bath which he loves. For the 15 or so minutes in the bath James comes off the hi-flow and there are no leads on him measuring his oxygen saturation, respiratory rate or heart rate. While he is in the bath, they measure him the old fashioned way: is he blue in the face? If not, he's fine.
So after the bath the leads went back on. But before the hi-flow went back on, I asked if we could just see how he does for a few minutes. That was fine, the nurse was busy with another baby anyway. James was a star, oxygen saturations in the mid 90s, good levels all around. He was clean, he was cozy, he was happy, he was awesome. A few minutes turned into about 30 minutes. The doctors were about to come around for evening rounds and I wanted them to see James as the superstar boy he is - off support and doing just fine. Better than fine. It bugs me that the ones making the decisions to keep him on the breathing support don't actually see what he is like when he is off (he is happy and does well). Well guess what?, the minute the doctors walk in the room James has a huge desat (meaning his O2 saturation went down to the 70s). He recovered from it on his own, but like Claire on the soccer field that one day, James decided not to show people his A game right after Daddy was talking him up.
James is so close to being ready to go off breathing support altogether. When he is "ready" is pretty subjective. If you ask me, he's probably ready now, as long as you don't mind him having a few dips - which happens anyway even when he is on support. Yes it is easier and more consistent, to maintain his saturations in the 90s when he is on some support, even if it is minimal support. And if there is a big dip, when he is on support they can crank up his O2 to help him recover. They say that O2 saturations are more important to maintain in the 90s once the baby is term, which is why they are keeping him on breathing support.
We've been at this long enough to know that you have to be patient. But at the same time, if you don't pipe up and advocate for your baby to move forward, they are more likely to coast along. Days turn into weeks which turn into months. The attention goes to the babies who need it and a baby that is stable and doing well gets less attention. James needs to come home. It's been over a hundred days. No one is listening to Michael Buble singing "I'll be [in the hospital] for Christmas".
This morning someone came to start working on James feeding. James needs to start learning to feed like a regular baby: you get hungry, you cry, you suck, you swallow and then you burp. James is missing all of that having the milk sent straight to his stomach in a tube every 3 hours. He has to get off the breathing support to start the big boy feeding.
So this is where we are at right now. James is doing great. He's growing. He is on less and less support. But he has a lot of ground still to cover and he needs to get off the breathing support to start the next chapter. I'm hoping that maybe the answer might be to let James take 30 or 60 minutes off the high flow to start learning to feed like a big boy, then go back on the high flow for a few hours, as needed, when he is not in feeding class. Time will tell.
December 17 - Day 107
James did really well today. He is on a high flow setting of 6 and he didn't need much O2 help today. He was cuddled by his mom, his big sister and his dad. A great day.
December 16 - Day 106
James was moving forward today. They dropped his high flow from a "7" to a "6" which means a little less support. They also moved his feeding tube to go through his nose (and into his stomach) instead of through his mouth. This is also a step forward because when he goes off the breathing support and starts to breastfeed and bottle feed, he will still have the tube in his nose in order to top him up, so getting used to the tube in his nose now is good. The photo on the left is a rare shot of James with absolutely nothing but a smile on his face.
In the past 3 days James has gained about 250 grams. That's a little over the 30 grams per day they like to see. They even expressed some concern about the rapid weight gain (are you kidding?!) as they say that too much too quickly can result in increased pressure on the lungs and breathing. Well after 3 months of them being concerned about his (small) size and (lack of) growth, we'll take a few days of concern about his (big) size and (rapid) growth.
December 15 - Day 105
James spent most of today sleeping, with O2 sats in the 90s and cuddling with Mom and Dad. We didn't get the girls in to visit their brother this weekend unfortunately due to coughing and busy-ness. We're hoping this week James might get another shot at breathing au natural or possibly try low flow. There is no easy answer as to when he is ready to move up in the world of breathing - or whether he is better off just continuing on the high flow for another week. He needs to get off the breathing support before we can start working on feeding au natural.
December 14 - Day 104 - 3 kilos!
James hit the 3 KG mark today weighing in at 3040 grams (6lbs, 11oz). Based on the camera angle in the photo on the left you would think he is 20lbs.
Otherwise it was a good day for James hanging out with Dad in the morning and Mom in the evening.
December 13 - Day 103
Today was another good day for James. However, he was desatting throughout the morning and requiring oxygen at a low level to stay within his oxygen saturation goals. By midday, the nurse changed his feeding tube from his nose to his mouth to see if that would make any difference. Until last weekend, James tube had always been in his mouth, but as these wee babies grow, the goal is to move the tube out of the mouth and into the nose as a way to avoid oral aversions (which many babies who have had long stays in the NICU can develop). It appears to have made a small difference to this point, so we'll see what James does tomorrow. The doctors have said that a little oxygen at this stage, meaning after his due date, won't cause harm to his eyes, so if that's what he needs, that's what he shall get!
James' weight didn't change from last night, so he's still just shy of 3000grams. He has outgrown his preemie clothes, and is now swimming in 0-3 month clothing. A few rolls of the sleeve, and two lost little feet in the legs, but he's in them! Tonight he was wearing jammies that we bought when we were expecting Claire. It's really cute to see him in his sisters early clothes. There was a long time there when James would have gotten lost inside the preemie-sized clothing, so it's a very sweet sight to see, and a great reminder of just how much he has grown. He may only be in the 3rd percentile for growth, but to us, he's a giant!
James spent the morning and night cuddling with Mommy. By the looks of this picture, James clearly thinks she is a great entertainer!
December 12 - Day 102
James had a good night last night and a good day today. He is pictured here wearing the old kimono that both Claire and Audrey wore as babies. He is packing on the pounds too and tipped the scale tonight at 2,930 grams. That is approx. 6 pounds 7 ounces. Almost 3 kilos! His oxygen sats also have evened out a little more although there were times today where he needed a sniff of O2.
Two of James' lady friends who were born around the same time as him have been transferred to other hospitals, closer to their homes, which means they are close to going home.
Today was my first day back in the NICU after 5 days of fighting a head cold. James looks bigger and he is a handsome young fellow. His feeding tube is stuffed in through his nose right now (perhaps this explains why James has been acting up during feeds?) so his mouth and chin are free of tape and tubes. When you see him in real life, he looks like a cross between me and my brother.
December 11 - Day 101
The big news today is that James is booked in for his hernia repair during the first week of January, 2014. Up until now they have been monitoring the hernia, which is somewhat common among premie boys. It's gotten to the point that they want to do surgery on it - not urgently though. James will have to be intubated temporarily for the surgery. By that time we hope he will be breathing on his own.
James was continuing to dip today during his feeds which results in him getting a bit of O2 support while his feeds are running. We're not sure what is behind this.
I'm hoping to get back to the NICU tomorrow after this week long head cold. Joanne deserves a night off.
December 10 - Day 100
James had his chest x-ray last night and his lungs look pretty good. Despite this, he was a little more up and down today and for the first time in several week, needed a little bit of O2 at times. His weight continues to go up and has surpassed 6lbs. I am still shaking the weekend cold so Joanne has been doing both the day shift and the evening shift.
Amazing to think that James has spent 100 days in the NICU. It feels like it has been a long haul.
December 9 - Day 99
Today was another good day for James with some ups and downs. He was seen by a respirologist and they are hoping to make a plan going forward to get James off breathing support. There was some discussion of moving him to 'low flow' this week and they may do a chest x-ray. Low flow is a lot like high flow, but it only provides oxygen support, not pressure. James hasn't needed oxygen for weeks now, so it is unclear whether there would be any point in putting him on low flow. It seems that James just needs the pressure support right now. I'm hoping he will get another chance at 'no support' soon enough because he seems to be almost there.
James had a bath tonight and a cuddle with his mom. A good way to welcome in day 100 tomorrow.
December 8 - Day 98
Joanne is recovering from the family cold and was able to go in to spend the morning with James. He's been doing very well and has been settled and sleeping. Yesterday they stopped giving him caffeine and sodium so James has been sleeping more and that has timed well with us having to be away from the NICU.
December 7 - Day 97 - Family Cold
We've caught a family cold on Beatty Street which kept us away from the NICU today. James had wonderful nurses looking after him today so Joanne and I needed to take the day to just rest and drink pints of OJ. Hopefully Joanne will be OK to go in tomorrow but we don't want to take any chances. Passing on a cold to James or any other baby in the NICU could mean big trouble.
There was some guest cuddling today as our friend Sasha hung out with little James. James was probably wondering where all the padding around his Daddy's stomach went all of a sudden.
James had a good day otherwise but it is hard to have to stay away.
December 6 - Day 96 - Making the Grade
Well today was a big day for James. The CPAP mask came off and nothing went on in its place. He was a free little boy, breathing like you and me. It happened at noon today. It was an amazing moment. It was, unfortunately, cut short to an hour and a half.
James is always hooked up to a monitor that reads his oxygen saturation in his blood. This is one of the numbers displayed on the screen beside his crib 24/7. If this number is between 95 and 100 that's like A+ breathing. If it is between 90 and 95, that's like A breathing. 86 to 90 would be like A- breathing and 80 to 85 is B+. Once you go below 80 the alarm goes off and the word "desat" starts flashing on the screen. There's not much tolerance for anything but A level grades when it comes to breathing and sending oxygen to your brain.
So for the hour and a half of James' debut performance he spent most of the time in the A- to B+ range with a lot of A level breathing too. Not bad for a little bruiser who weighs less than 6 lbs. But there was enough time outside the A level grades that it wasn't sustainable. The doctors have no interest in rushing James and decided to put him back on the high flow.
But the numbers don't tell the whole story. It was an unforgettable moment. James eyes were as wide open as I have ever seen them and there was a look of peace and contentment on him that was just magical to see.
Imagine being born and then having a tube stuffed down your throat for 55 days, pumping in air from a 1960s industrial grade machine. Then follow that with 40 days of having a vacuum strapped to your face pushing mach force wind up your nostrils. Then imagine one day those things come off and you are suddenly free. I can only guess that's how James felt today. Sure he has had 15 minutes here and there when he was having a bath or when they were changing his hat, but today was his first long stretch and he proved that he is there - or almost there. He has come so far. We're so proud of James. Not far now.
So as much as it was disappointing that he's not staying off all support, he is on the right track, he's on high flow again and doing well. The 1.5 hours from noon to 1:30 today is easily on the list of top 5 NICU moments so far.
December 5 - Day 95
Just a short note to say James had a good day today. He is resting up for the big test tomorrow when he will take of the mask and see how he does breathing like a big kid. Go James Go!
December 4 - Day 94 - Are We There Yet?
Today was a better day for James, although these days are mostly good days. He was more settled and even cracked a smile during his evening bath.
During rounds today they set a plan that this Friday they are going to take James off all breathing support and see how he does. He's going cold turkey, breathing like a big kid. This is very exciting! It seems there is no magic method for getting bigger babies off their breathing support. Some babies go straight from CPAP to nothing. Some babies go from CPAP to high flow to low flow and then to nothing. Some babies go CPAP off for 3 hours, CPAP on for 3 hours, then back off, then on, etc... Some docs don't like this last method. There is only one way to find out if something is going to work, and that is to try. Or as master yoda says, do or do not (there is no try).
We've been at this long enough to know we hope for the best but don't expect too much. Tonight during his bath James was off the CPAP and the leads for a good 20 minutes. When they put the leads back on I was delighted to see he was saturating in the 90s. So I know James and his little lungs can do it in the short term. The question is whether he and his lungs can do it over the longer term - including when he is upset and crying and when he is sleeping.
I'm always asking the staff how long the typical baby takes to do things... like get off CPAP or learn to breast feed... or how long we might expect it to take before James goes home. Whatever it is, having a ball park estimate helps me understand the process and helps me to relax about everything. But so many of the staff are so reluctant to make predictions. Some almost get irritated when you ask. I guess it can come across like an annoying kid asking, "are we there yet?" Of course, I understand that every kid is different and of course I'm not going to hold anyone to a guess - or file a Notice of Civil Claim if they get it wrong. But surely people have heard of the concept of averages. It is just nice to have a rough idea, are we talking days, weeks or months here? And, I'm always wondering, what are our chances James might be home for Christmas? It's just nice to know where we are going.
I have been able to corner a few people into coughing up some guesses. It seems like it will take something of a Christmas miracle for James to come home by Dec 24th. Even if Friday's experiment works, James still has to master eating 101 and that can take time. Plus, he also has to have 5 consecutive days of no desats before he can go home. Yikes! And the final test is the carseat test. He has to sit in a carseat for an hour and not desat! On top of all this, James likely has to have minor surgery to repair his hernia before he goes home. And some unknown sickness could set everything back.
So, I think that leaves us hoping for an early 2014 homecoming. Maybe January or February. One nurse said she would be very surprised if James was still in the hospital in March. There, was that so hard to say?!
December 3 - Day 93
Overall today was a good and uneventful day for James. He is, however, not loving his CPAP mask these days and it seems to me anyway, he's more than ready to take it off. Besides the discomfort of having a vaccum stuck to your face, it makes James quite gassy. While on the CPAP, James can't really burp the way most babies would after eating. So he goes through stages during the day of being quite unsettled. Other than that he's doing very well.
December 2 - Day 92
With the exception of one episode, today was a peaceful day for James. When Joanne arrived at the NICU this morning, James had a pretty big desat (which is his oxygenation level dropping below 86%) and a brady (which is his heart rate dropping below 100 beats per minute) that took him a while to come out of. This is the kind of stuff he did two months ago. Not the kind of behaviour expected in the big kid room. Something obviously happened, or went down the wrong tube, or who knows what. It was an isolated incident though to an otherwise good day for James. In part because of this, they switched him off the bubble CPAP and back to the regular CPAP. He's had a lot of switching of his breathing apparatus over the past several days. James had a bath this evening and was settled in for a long winter's nap when I left the NICU tonight.
December 1 - Day 91 - The NICU Symphony Orchestra Performs
James turned 3 months old today. It is crazy to think of a 3 month old who has tripled his birth weight yet weighs five and a half pounds. Since James missed his big sister's first solo performance at the VSO Christmas concert today, the NICU symphony orchestra came on site for a duet performance. In fact, this performance was written in the "doctor's orders" today! They ordered James to have a violin performance! His big sisters stole the show at the NICU.
Not to detract from this special moment, but James was demoted back to (bubble) CPAP after an off night last night on the high flow. They don't want to rush things even though he had done fairly well on the high flow. He wasn't perfect and they'd rather see him grow more and spend less energy breathing and instead, try to pack on the pounds.
November 30 - Day 90
James was back on his "high flow" today and had a great day. He spent most of it cuddling with his mommy and he was really awake and alert for a big chunk if the day. He is opening his eyes more and more and having more alert time these days. In the early days James spent 99% of the day sleeping it seemed.
The big news today was that the MRI report has come in. We have not yet talked with anyone from neurology so we're getting the info second hand, but from the sounds of it there is some good and some bad (or unknown) news. The good news is that James brain images appeared more or less normal. It has developed as it should, cortex, structure, etc... seems to be ok. The bad news was that there were some mild bright spots seen on the images. This could be nothing or it could be consistent with lack of O2 to the brain at times (which doesn't surprise us with all his ups and downs over his first 30+ days). But it sounds like this is the realm of the unknown. They don't know the real implications of these spots. We were told they are mild, whatever they are. We were also told by the NICU folks that 1/3rd of babies have these sorts of signs of lack of O2 and the impact is unknown. I don't think this is anything to worry about and I took away from the results that overall, things seemed to be ok. We will hopefully meet with brain specialist next week to talk more about it. Although we were warned that the neurology people tend to lay out the 'worst case scenarios' so we'll have to go into the meeting with an assumption that they might be 95% wrong.
November 29 - Day 89 - Moving Day
Today was a big day for James. He went for an MRI this morning and he moved to the big kids room in the afternoon.
Having an MRI meant that he missed breakfast and he had his breathing system changed up on him twice in the span of a few hours. James also needed to be sedated so that he would stay totally still. He wasn't really impressed with any of these things and he let the MRI people know. So they had to break out some heavy artillery to knock him out. They got the images they wanted and James recovered fine. We won't know the results until Monday as the neurologist-radiologist doctors who will interpret the images took the day off. Perhaps they wanted to catch the 50% off sales at Old Navy.
The other big news is that James graduated out of the "acute" room and he was moved to the back room with the big kids. The big kids are all in cribs, they spend a lot of time being cuddled and it is much quieter and darker. Daily rounds happen after the acute room so not until about noon. Most of these babies are on little or no breathing support and they are just figuring out how to eat. You don't hear the alarms going off constantly. We're next to a lot of the parents and babies who were born around the same time as James.
November 28 - Day 88
Tomorrow is James' MRI and there were a few changes today to get him ready for that. They decided to put him back on something called 'bubble CPAP' in order to give him a break before the MRI. They want him to be in peak form and to minimize the risk that James might tire out from his high flow during the MRI, they put him on the bubble CPAP for most of the day today. It looks and feels a lot less invasive than the CPAP machine he was on a few days ago. James also has to get an IV tonight as he will be sedated for the MRI and he needs to get fluid because he can't eat for 4 hours before the MRI. The MRI is scheduled for 10:15 tomorrow and he will get wheeled down the hall. After which the plan is to put him back on the high flow.
Joanne wasn't feeling well today and had to go home earlier than usual. But James had a full day of cuddles. There is a group of women volunteers in the NICU who will cuddle babies when parents aren't there (if the parents consent/sign up). As much as it is a little weird that someone you don't know is cuddling your baby, it is a wonderful service and we took full advantage today. Thank you volunteers!
November 27 - Day 87 - High Flow
James is moving up in the world of breathing. Today he said goodbye to his hat and mask (CPAP) and traded it in for some high tech 'high flow' prongs. If we put some hair on those things it would look like an awesome Movember stash. Maybe Lanny McDonald or the Iran Shiek.
These prongs are less invasive, less support and James did really well with the transition. This means the MRI scheduled for Friday will likely go ahead.
The MRI is not critical, it was suggested months ago as part of the concern over James' shaking (aka 'myoclonic movements'). They wanted to do it months ago but it went on the back burner while he was on the jet and fighting an infection. The people in neurology preferred to do the scan once James was term anyway.
Sometimes when we look at James it is hard to believe that he is in a crib, wearing pyjamas, on very little breathing support and over 5 lbs. He has come so far from those early days.
November 26 - Day 86
The next couple of days are big days for James. Today, they weaned him down to a PIP setting of 5 on his CPAP machine. That's great. The plan tomorrow is to take him off CPAP and put him on something called "high flow". This is a less invasive single tube taped to his cheeks with nasal prongs that can provide a little oxygen and a bit of pressure. There is no hat and no mask and it is much less support than he would get on CPAP. This is another big step forward.
Tomorrow will be a test run to see how he does. What has been driving the NICU medical team to get James off CPAP sooner is that they want to do an MRI (brain scan) on James and there is an appointment tentatively booked for Friday. He can't do an MRI however while he is on CPAP. So if he can handle the transition tomorrow and Thursday, they will keep the MRI appointment for Friday. I think it is great that they are pushing him forward. Today is roughly one month since James came off the ventilator. Once he is off CPAP he can start attempting bottle or breast feeding. The sooner this happens the sooner James will be able to come home. But we know all too well that you can't push these little guys beyond what they are capable of or you can wind up three steps backwards. Hopefully James is up for the challenge.
James had another bath today which seems to be the perfect activity for 8PM when James gets fussy. Once he is in the bath he is very calm and his eyes open up wider than they ever would in the crib. He loves the bath.
November 25 - Day 85
Today was a really good day for James. He is handling the weaning down on his CPAP settings well and spent the vast majority of today on room air (21% oxygen). He was 2500 grams on the scale today. And he had an after school visit from his big sisters. As far as the NICU goes, it doesn't get much better than that!
November 24 - Day 84
Today was a good day for James. Lots of sleeping, eating and he is doing great with his breathing. These days with James being so stable and doing so well, it is natural to be a little more upbeat and casual in the NICU. But it is not a place to be acting all chipper. As we look around there are lots of new babies and lots of people who may be where we were two months ago, riding the ups and downs. There is one heartbreaking story in particular. A young couple who live in a ski town about two hours from Vancouver. The mom went into labour at home and couldn't get to the hospital on time. The baby was breached and it was an unplanned home birth gone horribly wrong. An absolute tragedy. A baby that may not make it past the weekend. The would be grand-parents have flown across the world to be there for what are probably the baby's last days. Sorry to drop such a tragic story but it is the reality of another baby in the NICU resting about 20 feet away from James. There are constant reminders of how precious life is.
November 23 - Day 83 - Hulkamaniac
"...in this corner, wearing white trunks, weighing in at 2450 grams (5lbs, 6oz) Jimmy P!"
We were at friends for dinner tonight and pulled up the classic 1980s bout between Andre the Giant and Hulk Hogan on the big screen. James looks like he's ready to wrestle in his weigh-in shot from this evening.
Today was a great day for James. He spent much of it on room air (21% oxygen). This is great seeing as they dropped his CPAP settings yesterday. On Monday they plan to drop him from 7 to 6. They are hoping in a week or two they might be able to get him to hang up the mask - like the killer Bs
I had a nice chat with one of our favourite neonatologists today. I took the opportunity to thank him for everything him and the NICU team have done for James. It is pretty amazing what they do in the NICU. They took a 753 gram baby, with lungs that were extremely under-developed, unable to breathe or feed for himself, and here he is a few months later, over 5 pounds, working lungs, growing, wearing pyjamas in a crib, flailing his arms - a little baby James who has touched us all. It has been a rocky road, and its not over yet, but in the past few weeks things have really steadied. As I mentioned yesterday, these days it seems each day is a step forward.
The nurses, doctors, respiratory therapists and everyone else who work in the NICU have amazing jobs. They really do help people. Lawyers often like to toot their own horns at call to the bar ceremonies and dinner speeches about what an honourable profession theirs is; dedicated to public service. But it seems to me, you can't top the people in the NICU, especially the nurses. If you ask them what they do for a living, they should simply say they help people. That's exactly what they do. And they don't take all your money either.
November 22 - Day 82 - Due Date
Today was James' due date. We're still a ways from James being able to come home but James is getting there. He's mostly taking steps forward these days. It feels like the days of one step forward and 3 steps back are behind us. We hope.
I'm still holding out some hope that James might be able to come home by Christmas, but not counting on it.
His CPAP settings were dropped from 8 to 7 today and the plan is to move him down to 6 on Monday. That's wonderful news, although it does feel like James is a way from being able to breathe without the assistance of the mask. A lot of the photos of James posted here lately are of the 30 seconds of the day when the mask is off. During that time his oxygen saturation generally drops. The other 23 hours, 59 minutes and 30 seconds of the day he has the assistance of the CPAP mask. So it is hard to picture the mask coming off completely but he will get there. You don't see many kids in grade 4 with a CPAP mask on.
The other big news today is that the EEG report came back normal. No sign of seizures. That was the same result as the previous EEG and it is always nice when the word "normal" is used in the same sentence as the word "brain".
The picture above is what 300 ounces of frozen breastmilk looks like on its way to the donor milk bank. Joanne has been pumping every 3 hours since day 1 and she produces more than James needs, so she has generously donated a hefty supply that other babies will get.
November 21 - Day 81 - Last Day as a Premie
Tomorrow (Friday) is supposed to be James' due date. Instead of coming out on Nov 22, he is almost 3 months old.
The big news today is that James had an EEG. This is where they put about 20 little probes on his head and measure his brain waves. They are checking again to see if his shakey movements are seizures. They probably aren't but the EEG should answer that. We will hopefully get the results tomorrow. They also want to get James in for an MRI (brain scan) but that is not going to happen until he is off CPAP. Otherwise they would have to intubate him for the MRI which is not what anyone wants to see happen to his lungs. Since the MRI is not urgent, it can wait.
Otherwise a good day in the NICU.
November 20 - Day 80
James had a restless night last night but a better day. Today, a specialist from orthopedics came to see him and look at the x-ray of his arm. She said it was healing and although the bones are not perfectly aligned, that would sort itself out in the months ahead. The good news was that the amount of calcium buildup around the break was a sign of healthy bones. So James is out of his sling now.
This evening James had his second bath which he loved. All in all a good day for James.
November 19 - Day 79
James is enjoying his last few days as a "premie" before he turns into a term baby on Friday. Today, he took another great step forward switching his CPAP machine from "biphasic" (which gives him 2 pressures: a high set at 10 and a low set at 7) to the regular CPAP setting (with only one pressure set at 8). This is progress and it is really the home stretch in terms of breathing. In the days and weeks ahead James will hopefully come down from 8 to 7 to 6 and then to 5 at which point they can try taking off the mask to see how he does with no breathing support. It is difficult to predict how long it will take James to get from 8 to 5. It could be a few weeks it could be less or it could be more. James handled the transition like a champ and he remains on minimal oxygen support. Once the mask comes off and he has mastered breathing, the focus will then switch to feeding; getting James to start breastfeeding and/or bottle feeding.
James had an x-ray of his arm today and it is healing, but the bones are not lined up exactly as they should. So orthopedics is supposed to come tomorrow to check it out and suggest what to do.
November 18 - Day 78
Today James had his 2 month vaccinations. Three shots in total and he handled it well. They watch in case a fever develops afterwards but James seemed to do fine.
James is ready to start going down on his CPAP settings. For nearly a week now he has been on minimal oxygen. They wanted to wait for the vaccinations, so it will likely be Wednesday when they make those moves.
James has passed the 5 pound mark. This coming Friday would have been his due date.
November 17 - Day 77 - World Prematurity Day
Today, we learned, was world prematurity day. Although it sounds like something Mayor Quimby would have created, they had cake, a big poster to sign and encouraged cuddling. We celebrated in style with Audrey and Claire's first cuddle with James! An unforgettable moment.
James had a great day in terms of his breathing. He is on minimal oxygen and saturating well. The only cause for concern today was that his brief moments of shaking seem to have returned. Always keeping a close eye on James.
The shaking may be due to the rapid flash photography (kidding, no flash in the NICU) however, as papa-razzi was snapping like crazy today with both girls holding James for the first time. I have posted a tonne of photos at the side.
November 16 - Day 76
James had a good day today with lots of cuddles. He was fussing this morning before we arrived at the NICU and our wonderful nurse (also a primary nurse, meaning she is with James every shift she works) cuddled James for almost an hour and he settled. Amazing! He spent the majority of the rest of the day in Dad's and Mom's arms.
James is finally off any kind of medication or pain killers now which is great. With that, he can be a little more fussy whether it is because of hunger or his arm being sore or missing his mommy or because he only wants to eat candy. In other words, James is more and more like a "normal" baby now and it is wonderful. Just looking at the picture below from yesterday, compared to say, two month's ago, it is absolutely incredible how far he has come, how much he has grown.
November 15 - Day 75 - 39 weeks today
We're still trying to digest the scare that was the last three weeks, but also
trying to put it behind us. Overall, we're just so relieved.
Today was a good day for James. As you can see in the photo, James can handle short durations (enough time for a quick photo) without his CPAP mask. When they weigh him, they take it off for 10 to 30 seconds. His oxygen saturation typically goes down, for example, from 90 to 80, but it doesn't plummet and it seems to us that that is a really good sign that James is getting there.
James oxygen requirements crept down today and they have finally weaned him off his morphine completely. He is still getting Tylenol for pain he may have from his broken arm.
James is 39 weeks today. Next Friday (Nov 22) is his due date.
November 14 - Day 74 - Miracles Happen on November 14th
BREAKING NEWS: JAMES DOES NOT HAVE A PEROXISOMAL DISORDER. TEST RESULTS CAME BACK NORMAL! Prayers have been answered!
Just after noon today we got the call from the specialist in metabolics. The results of the Very Long Chain Fatty Acid (VLCFA) blood tests that were sent just over three weeks ago to a lab in Baltimore had come back normal on all fronts. This confirms that James does not have a peroxisomal disorder. James beat the odds.
What an unbelievable turn of events. The specialist was delighted with the news, but at the same time almost apologetic. But there was no need to apologize, the elevated level of pipecolic acid in James blood and some other things pointed to this disorder and her 95% assessment was honest and frank. But it was never 100% until the VLCFA test. James was the 5%.
I can't put into words the emotions that Joanne and I have dealt with over the past three weeks, especially in the first few days of being hit with the news. It was hard to even talk about it without breaking down. The idea that James might not see his 5th birthday, may not hear or see and have brain developmental problems of unknown severity, was heart breaking beyond belief. When a specialist tells you it is a 95% chance James would have some form of the disorder, the hope that it might not be true seemed more like denial. But we had some hope it wasn't true. We had to wait for the VLCFA test. And I think we had come to terms with the fact that you have to accept what life has in store. Above all we wanted James to come home, to cuddle him and for him to feel the love we have for him, and the love of the two sweetest big sisters a guy could ever ask for.
Thank you everyone for your thoughts, prayers, kind words and support. James has had probably a million hail Mary's said in English and French and Irish. Kitty Quish, Grammy, Fr. Eric, everyone at ESS, all the Cleary's, Kennedy's, Fitzgerald's, Childs', Virginia and West Virginia, Michigan, Toronto, London, Vancouver, Victoria, New York, Tipperary, Carlow, Wexford and many more I have missed. Thank you.
Going forward they are going to repeat the pipecolic acid test (NOT the VLCFA test), almost out of curiosity, to see if it is different a second time. But otherwise the metabolics people will back off and maybe see James when he is 6 months or a year. So James' only job now is to eat, sleep and grow. The high level of pipecolic acid that started this whole show remains a bit of a mystery. It could mean something or it could mean nothing. We know it is not a peroxisomal disorder based on the VLCFA test. My diagnosis is that James is just like his late great uncle UJ who he was named after; he is one of a kind.
November 13 - Day 73
Another good day in the crib, on 25% oxygen and with lots of awake time. James shared a moment with his mommy this morning staring into her eyes. It is fair to say that James has had a much better week than Toronto's mayor.
James was with the same nurse who had James the day he was born. Amazing how far he has come since then.
Still no word from metabolics.
November 12 - Day 72
Another great day for James. No word yet from metabolics. He had further x-rays done today but we don't know the results yet. James also had an eye exam and things looked good. It looks like he does not have something called retinopathy which is common among premature babies and this is good news.
James breathing continues to be strong. Today was a day when desats were few and far between and his oxygen requirements are down in the 20s. Way to go James. His oxygen requirements need to come down before they can move down on his C-PAP settings.
He had a long morning cuddle with mom and a long evening cuddle with dad.
November 11 - Day 71
Just a short post today to say it was another good day for James. He had a long cuddle with mom in the morning. No changes. He's handling the 3 hour feeds.
This week will likely be a big one for James and for us. Tomorrow is three weeks from when the blood work was sent to the US to see if he has a peroxisomal disorder. So we're expecting to hear back from them this week. Tomorrow James has another full body x-ray.
November 10 - Day 70
Another great day today. James had a visit from his big sisters who, as you can see in the photo, can now tickle his toes and hold his soo soo (soother) at the same time. The whole family was present for rounds and all the staff were so nice to the girls.
The only change today is that they are going to switch James to feeding every 3 hours instead of every 2. This is another step in the direction of becoming a big kid. They give the same amount of food (which is about half breastmilk and half beefcake supplement), they just spread the amount over less feeds. So that means he will be getting some pretty big quantities but then he has a 2 hour break in between instead of one hour. When James comes home, which we are still hoping can happen before Christmas, a three hour feeding schedule will be way easier to manage compared to a two hour one.
James had a monster 4 hour cuddle with mommy today during the day and with Daddy in the evening. He is 38 and a half weeks - so just over a week from his due date (which was supposed to be Nov 22). Almost 5 pounds now.
November 9 - Day 69 - Big Boy Crib
Today was a great day for James. For starters, our primary nurse was on so he was in the best care. His breathing continued to be strong and steady. He is continuing to gain weight. But the highlight of the day was switching James to a crib. This may not seem like a big deal, but whatever it is about seeing him in a crib, it is just amazing. He's right there. You just reach over and put your hand on him. He looks like such a big boy. He feels so much closer.
James had a nice cuddle with Dad in the AM and with mom in the evening.
November 8 - Day 68 - Raise the Roof
The roof has been raised up on James' isolette. This change, like a lot of the small changes that occur over the last month, is one more step towards being more like a "normal" baby. At 2 KGs he has enough weight to regulate his own temperature so he doesn't need the isolette keeping him warm. He might be changed to a crib sometime this weekend.
There was more investigation today into the broken arm. There are some genetic diseases with brittle bones and even spontaneous breaks which is worrisome. However, from what I have read, that is not a symptom of peroxisomal disorders.
They did a full body x-ray on James' bones about two weeks ago as part of the investigation into the suspected peroxisomal disorder, and his bones seemed ok. But it turns out, they didn't get good imaging of the right side when they did that so they're going to re-do some x-rays.
James' lungs and breathing continues to be going well.
November 7 - Day 67 - Broken Arm
A broken arm!? Are you kidding me?! James has had a swollen right upper arm since Tuesday, so during rounds this morning, the doctor looked at it and ordered an x-ray. Within an hour, he came back to say James arm was broken. The x-ray looked pretty bad - a clean break.
James is obviously one tough customer. He hasn't been crying like you might expect a kid with a broken arm and he still can squeeze and hold our finger in his right hand.
They made a sling for him with gauze and orthopaedics came by to confirm that they would not cast it, but instead, continue to use a sling to immobilize his arm
for the next 2 weeks, and repeat an x-ray at that time to assess the healing. The hope is that the bone will fuse and heal itself in that time, as long as it's given the opportunity to stay immobilized. James is now getting some Tylenol to ease the pain, and he will be swaddled more often as a way to help keep his arm tucked in.
It is a mystery how or when this might have happened. Because James seems to be handling it like a champ, I was able to have a sense of humour about it and accused one of the more soft spoken and gentle mannered doctors of punching him in the arm. It is hard to believe that someone handled him so rough so as to break an arm. Instead, the suspicion is that James may be a little more fragile than we thought. That doesn't bode well for his NHL career, at least as a grinder in the corners.
Aside from this James is doing quite well. He's back gaining weight and has topped 2,000 grams or approx. 4 pounds, 8 ounces. His breathing has been nice and stable, oxygen requirements are coming down and the fear of him being re-intubated is almost gone and it seems like he's settled in and proven himself on the C-PAP. When they weigh him they take the mask off so he is breathing just like you and me and for that 10 seconds or so his saturations slowly go down, but they don't plummet.
November 6 - Day 66 - Bathtime!
Today was a much better day. James was pretty stable for the day but the big excitement was that he had his first bath. Here is the story of this special event in Mommy's words:
James' lovely nurse suggested we give James a bath! Not just any bath - his FIRST! We would bathe him at 1130am with RT on hand to hold his CPAP mask, and provide all-around support in case our boy decided he would get up to his old tricks. Once again, James surprised us all. With his oxygen turned up to 52% for the festivities, James showed us just what he was capable of. Sure he let out a few cries in the transition, but once in the bath basin, his legs were moving about and he was cool as a cucumber. He LOVED it! I held him throughout and James received a healthy dose of much-needed, hands-on Mommy love. The nurses working today, as well as our favourite NICU pediatrician, seemed genuinely happy and excited for us to be having that moment. Even one of the Red Cross volunteers came up to me after to let me know what a beautiful sight it was for her to watch me beaming with happiness as I bathed my son. After the bath, James made an easy transition into my arms for a cozy afternoon cuddle. While a handful of tears landed on his newly cleansed head, James didn't seem to notice. He was too tuckered out from all of the excitement. Day 66 - unforgettable!
November 5 - Day 65 - One of those days...
Today was one of those days when if something could go wrong, it did. Not just for James, but all of us. Let's recap the low-lights:
5:30am: Girls wake up, apparently not knowing that the clocks went back an hour this weekend.
8am: Bike in the rain to take Audrey to daycare. Cut off by 2 cars, one of which was a close call.
10am: James is desatting a lot and is on 45% oxygen and gets a blood gas with a CO2 of 68. That's bad. Normal range is between 40 and 60, the lower the better. We're starting to worry that the C-PAP party might be over and he would have to be re-intubated - a huge step back. Plan was to do another gas at 4PM.
11am: Sean tries to file document in court and the registry bumps it on a technicality.
12noon: Engine light comes on on the van.
2pm: Claire's school called and we forgot it was early dismissal day.
3pm: Arrive home with Claire to house with noxious odour and dusty smoke in the air. After 30 minutes trying to find the source of the problem, discover that plastic rod Audrey broke off the blinds was inside of baseboard heater and melted down to little pellets.
With this backdrop, I arrived at the NICU shortly after 4 and almost snapped when I had my hands on James, was giving him a pep talk, and the nurse, who I've not met before, came over to introduce herself with something like, "excuse me, please don't bother him... who are you?" Pardon me??!! But I kept my composure, gave some "constructive feedback" and thankfully James ran a blood gas of 60 just after 4:30pm. Right at the upper limit, but an improvement. He seemed to have settled down as the afternoon wore on.
Of course, things could have been far worse.
But let's end with the best part of the day: when James blood gas came back with 60, the respiratory therapist, a wise woman who was there when James was extubated, said, "James isn't giving up. Neither are we." Today, those were timely words we needed to hear. Hang in there James.
November 4 - Day 64
Today they ran a blood gas on James which was the first time in a while they have done so. He used to have them done daily, and often a few times a day, but now that he has become more stable, they don't see the need to poke his foot just to confirm that he is oxygenating well. And they were right, his blood gas level was great.
They also ran the usual blood test to check for levels of hemoglobin, platelets, etc... and it was normal for the most part. They did end up giving him a blood transfusion, however, to give him a boost. He has been looking a little pale lately, especially in his hands.
James continued to have regular desaturations requiring them to turn up his O2 to about 30% to get his oxygenation up. Then he would be saturating high and they turn the O2 back down. There was a nurse working with James today who had not worked with him before and who was concerned about these dips. It all seems to be about perspective because, compared to two weeks ago when James was intubated, on 50% oxygen, requiring significant support on the Jet and he still had dips like this, even worse, these dips are mild in comparison.
James weight has been up and down and hovering around the 4 pound mark for a while now. One of the side effects of the dexamethasone, while you are on it, is problems gaining weight, so it may be related to that, which he just came off yesterday. He's on full feeds and his feeds are loaded with supplements to add extra calories.
Today was Mommy's Birthday. She had a nice birthday cuddle with James. It was also the one day of the year when the Dave Matthews Band is permitted to play on the home stereo. But she got a copy of James Taylor's "Sweet Baby James" album so that soon took over the airwaves. There might be some tears behind the album cover pictured above.
November 3 - Day 63
Overall James is continuing to do well. He has lasted over a week now breathing without a ventilator and he has maintained fairly low level of oxygen support. Today his Dexomethasone course ended and as the day wore on James was starting to dip a little more. He would be breathing fine and then suddenly have a desaturation forcing them to crank his oxygen up to 30% to get him back up. This is a far cry from the days of 50% and 60% oxygen on the Jet but we hope this is only temporary and that James can continue his positive momentum. James had a cuddle with both Mom and Dad today.
November 2 - Day 62
Short entry today. Another great day for James. No changes at rounds. He was saturating well and requiring little or no oxygen support. He had a 4 hour cuddle with Mommy and an evening cuddle with Daddy. Wish every day could be like this!
November 1 - Day 61 - 2 Months / 37 Weeks
It's about time Mommy had a turn to write, so here's our guest editor on James' 2 month anniversary:
Today James is 37 weeks old, and he's been fighting a great fight for two whole months here in the NICU. Two months! In these last two months, we have seen many babies come and go from room 41 - and we've triumphed for the families of the babies who have graduated out into the less acute areas of the NICU.
The last few days, some of the nurses have been saying that James may get moved soon as he is more stable, no longer vented, and in general, making progress. First on the agenda may be moving out of his isolette into a crib. The requirements to move into a crib are simple - he needs to be able to control his own body temperature and be 1800 grams.
Making the move into a crib will also mean that James will get to wear more than just his diaper! If hand-me-downs from his big sisters make their way in to the NICU, James will be sporting the manliest pink polkadotted jammies and onesies around! Today his nurse put him in a onesie (pictured above - it's only the second time James has worn anything more than a diaper). Holding him while swaddled and wearing a teeny tiny onesie is a remarkably beautiful sight. Add in one of the giant purple preemie soothers that James has developed a Claire-esque adoration for, and it's tear-worthy.
He's settled back in nicely with the dexamethasone to support his breathing while on biphasic, and at times today he was requiring no more than 21% oxygen to rock the sats. The plan for James this weekend is to leave his dexamethasone dose and the biphasic settings the same. The only change this morning was to continue along with decreasing his morphine dose, in an effort to wean him without inducing withdrawl. Seems crazy to talk about our baby boy and morphine withdrawl, but it happens quickly in babies like James, as he's been on that now for about 5 weeks. The goal is to decrease 10% every two days, until he's eventually off. He's been on a slow wean now for almost two weeks.
To date, one of the most remarkable neonatologists has worked with us for the last 2 weeks, and he is off rotation after today. He saw us through our very challenging second meeting with Metabolics, and he offered up endless compassion, kindness, and care. We will miss him come Monday at rounds!
James had a nice long cuddle with Mommy this morning and tonight with Daddy. Having the opportunity hold him multiple times in one day is so special for us. These days of positives are providing us with much-needed fuel and encouragement.
October 31 - Day 60 - Halloween Mask
Today James gets to feel like a normal kid... wearing a mask on Halloween. He had a very good day and spent a good portion of it cuddling with Mommy and Daddy.
There were no changes on rounds today and by the end of the day, James was down to 24% oxygen which is wonderful. It has been 5 full days since he extubated himself and it is such a blessing that he has not only hung in there, but performed like a champ.
James has had a very eventful October. Compared to a month ago he is a pound heavier, extubated, without his PICC line or IVs, on full feeds and much more stable. Not bad at all. It was an unforgettable month dealing with the suspected peroxisomal disorder.
November is going to be a life changing month as we expect the test results to come in. James' all star performance in the lung department over the past week has been a very nice distraction from the wait and the worry of these tests.
October 30 - Day 59 - Back Down to Earth
We were beginning to think that James was superman, but today he came back down to earth. They decided to start rounds this morning with the easy ones, and James was top of the charts. One of the doctors even said, "let's do James first, he's perfect!"
Well even Ned Flanders can lose his cool. As the day wore on James was up to his old tricks with some desats (O2 level drops temporarily) and bradys (heart rate drops temporarily) and they had to manually bag him a few times (take his CPAP mask off temporarily and use a mask attached to a balloon they squeeze to mimic breathing) to get him to come up.
He might have been putting on a show for Tawatha (aka Cathie) who made the trip over from the island to meet James, but the doctor decided they made too many changes too quick and it shook him off his game. Yesterday they switched him from the biphasic setting to the regular CPAP setting and at the same time stopped his dexamethasone medication. They reversed both of those decisions this afternoon putting him back on the biphasic setting (which gives a little more air pressure support) and back on the "dex" for three more days (which just puts him on even playing field with professional cyclists, certain home run hitting baseball players and a Ferrari driving, York University trained sprinter named Ben).
No big deal. James has been rocking so well for the past week, he's certainly entitled to a day of less than perfect. He's still the coolest dude in the NICU.
October 29 - Day 58 - Still Rocking
James continues to perform like a star. When they switched him to CPAP on Sunday, he was on a setting called "biphasic" which offers a little more support. He was switched off that setting today onto regular CPAP. Another step forward.
After 55 days on the ventilator with so many ups and downs it is so wonderful to see James so stable and his lungs improving so rapidly. We know it can all go south pretty fast, but we are enjoying his progress, and this time it feels like his lungs are really getting better.
Other than the thin feeding tube now in his mouth going to his stomach, James doesn't have any other invasive support inside his body. No PICC line. No IVs. No breathing tube. This greatly reduces his chances of getting an infection. They have stopped his course of dexamethasone (the steroid) today as well.
Joanne had a nice cuddle with him in the morning and Claire got to visit James after school. James weight is also up. A great day today all around.
October 28 - Day 57 - Cruising
James had a great day. He remained on a pretty low level of oxygen support and seems to be settling in with his new headgear. It is nice to be able to pop him in and out of the isolette with relative ease. Joanne held him for a long time during the day and I held him in the evening.
He has dropped a few grams on the scale but they told us that is to be expected when he is on dexomethesin. Getting his weight back up will likely be up for discussion tomorrow at rounds.
We're able to hear little James cry now since he doesn't have a tube down his throat. Normally you don't like to hear your baby crying, but right now it is wonderful to hear.
October 27 - Day 56 - Keener
Just after 6am this morning we were awoken to a phone call from the NICU. James wasn't waiting around until 9am for his scheduled extubation. He took matters into his own hands.
At 6 this morning the nurse heard a cry come from the isolette. Babies with tubes down their throat's can't cry. Not only had James pulled out his tube, he had also crawled up to the top of his isolette. So things went into hyper drive. The nurse quickly bagged James and called for the respiratory therapists (RTs) and the doctor. In minutes they had him onto a mask and onto CPAP. By the time I arrived at the hospital, he was rocking it.
So an unconventional start to a very big day. And James performed like a star. His oxygen was down around 25% and his saturations were high and steady. His blood gas CO2 level was perfect. It was amazing. I cuddled him from 9 to noon and Joanne from 4 to 8pm. The girls got to see their little brother with his darth vader costume on. What an awesome day. Long may it last!
Proud papa-razi has posted a lot of photos on the side.
October 26 - Day 55 - Ready for Extubation!
Early this morning Joanne and GG headed for YVR on the Canada Line. GG has been with James and us, during what has been one of the most difficult, unexpected and emotional weeks of our life. When GG arrived James was in a bit of a rut in terms of his lungs and we had a bomb drop on us with the "95% likely he has a peroxisomal disorder" news. As GG's plane left Vancouver James had turned things around.
To say that James has improved or even progressed in the last 24 hours would be the understatement of the year. He is scheduled to be extubated tomorrow morning (Sunday) at 9am. Extubation means they will pull the breathing tube out of his throat and switch him to a little mask and hat called "CPAP". Conceptually, CPAP is quite different than being "intubated" and on a ventilator. When you are on CPAP you breathe for yourself and the machine helps maintain pressures so your lungs don't collapse. They can also continue to give you extra oxygen if you need it. On the other hand, when you are on a ventilator the machine is mostly breathing for you. It's not good to be intubated and on a ventilator for a variety of reasons, but obviously it is necessary for the smallest babies who need time to grow. A lot of kids in the NICU (especially those born after 30 weeks) never have to be intubated and start right on CPAP. But every kid is different. James spent 55 days on a ventilator.
Three or four weeks ago, when they were trying to wean James down on his settings so that he could come off the ventilator they would drop numbers by 0.5 each day and see how he did. For example, they would drop his "mean air pressure" from 13 to 12.5 one day if he had a good day. Then the next day go down to 12. He might stay at 12 for two days and then go down to 11.5. And then James would crash and they would put his mean air pressure up to 14. It was kind of like a game of snakes and ladders.
Two days ago, before they started dexamethasone (the steroid) James mean air pressure was up around 16 and he was requiring 50% oxygen. Late last night it was down to 10 and he was on room air (21% oxygen). He was taken off the jet and onto a conventional ventilator early this morning. Today, he has weaned down to the lowest settings possible on the conventional ventilator. In short, he is ready for extubation. This is awesome news. Two days ago we would not have ever believed this kind of progress was humanly possible.
I have no doubt that James will do well at the start and through the transition onto CPAP. But the real test comes 10 hours later, or two days later. Babies can run out of steam when switched to CPAP and have to be re-intubated. Even if that happens, the time spent breathing like a big boy, without a tube, is very good for James and his lungs. We hope he doesn't have to be re-intubated but no matter what happens this is all very good news and moving in the right direction. Another benefit of being on CPAP is that taking him out for a cuddle is much easier as you don't have to worry about moving a delicate tube taped to his face. James could be on CPAP, in various forms, for another month or so before he's ready to breathe unassisted like you and me.
Thank you GG for everything you did this week for us and for being with us during such a difficult time. It was amazing for GG to get to hold James. While the steroids likely had something to do with James' unbelievable turn around, no doubt a cuddle from his grandma helped.
James is resting peacefully tonight for the big day tomorrow.
October 25 - Day 54 - 36 Weeks
Wow, what a day of improvement. Let's hear it for the roids! James was out for a long cuddle with Joanne today and over the course of the day he has come down incredibly on his oxygen level. As I type this he is down to 29% oxygen (21% being what we breathe). His blood gasses are off the charts (on the good side) and so they are having to rapidly come down on his ventilator settings to keep pace with James' rapid progress.
Because they have been suspicious about the accuracy of the weight reading off his isolette, while he was out for a cuddle today they put him on a proper baby scale. He clocked in at 1952 grams! (approx 4 pounds, 5 oz). He has gotten a little puffy (ie retaining extra fluid) so that may not be a true weight, but man is it nice to have a day where the numbers are moving in the right direction.
One difference, however, that has come with the rapid progress, is that James' heart rate has been lower. Still in the range that is acceptable, just much lower than his normal rate.
James turned 36 weeks today. Way to go James!
October 24 - Day 53
This morning James was given his first dose of the steroids that will hopefully boost his lungs and get him off the jet. I was surprised to learn that the steroids, which I had been nervous about, is the very same medication that Audrey was prescribed about a month ago when she had croup (toddler bronchitis). One shot worked like a charm for Audrey so hopefully it will do the same for James. They are going to try it for 3 days and see where we get.
But the highlight of the day was the fact that James spent almost 6 hours out of the isolette today being cuddled. He came out just after 2 and didn't go back until 8. It would take 'buns of steel' for one person to be able to sit for that long without getting a cramp, but today they switched him directly from Joanne to GG. GG held her littlest grandson for two very memorable hours.
October 23 - Day 52
James did well today and for the first time in a long time he came down on some of his ventilator settings after he had a really good blood gas. His oxygen requirements were in the high 40% range. The plan is to start him on steroids tomorrow in the hopes that his lungs will greatly improve and that he can come off the ventilator sooner.
This afternoon we had a big meeting with the specialist from metabolics, our primary nurse and several of the doctors from the NICU. It was a chance for the NICU doctors to hear first hand the devastating news we heard on Saturday. Whatever it is, when you hear it from the specialist's mouth, it becomes so real. The first question from the neonatologist was "why do you think that James has a peroxisomal disorder?" The main reason is the high level of this specific acid in his blood but there are a number of other reasons as well. It wasn't much easier to hear this a second time, but it was good to be able to ask a whole bunch of questions. I have spent the past week reading about this disorder and had a list of about 20 questions.
There are so many various forms of the disease, and most of all, I wanted to get a sense of which ones might be in play and which ones are less likely. Until it is diagnosed, they can't say for certain that he has the disorder nor can they say what type. But we know a lot about James and it seems that some of the various types are less likley than others.
Top of the list of the potential disorder that we might be dealing with is one called infantile refsum disease (IRD). It is considered to be one of the milder forms of the peroxisomal disorder but as I wrote in a previous post there is nothing mild about this condition. Besides the many complications it brings, life expectancy is greatly diminished. When I asked the specialist about this, she asked me what I had read. I said some sources said you might not reach school age, others said 10 years and others said 20. She responded by saying that she agreed with all of those assessments. That gives you an idea of the range as well as the seriousness of this disease.
The blood test that went out yesterday morning is the test that will confirm whether James has a peroxisomal disorder and what kind he may have. We can expect the results in 2 - 3 weeks. If it is confirmed there will be more tests. If it comes up that he doesn't have it then James and the metabolics people will have given us the scare of our life.
James ended the day with a cuddle with Dad.
October 22 - Day 51
Today James did well in the morning but as the afternoon wore on, he started to dip. It was a fairly quiet morning, other than some blood being taken for the metabolic tests. He was with one of the best nurses of all, who is one of our primary nurses (meaning every shift she is on she works with James) and who is a mother of two kids around the same age as Claire and Audrey.
Our friend Andrea came over from the island to meet James and Joanne held him for most of the afternoon. He was unsettled however, going back into the isolette and stayed that way for several hours after. They ended up doing a chest x-ray and increasing some of his ventilator settings. His lungs were looking a little worse than yesterday but better than they were on the weekend. James' weight was up which is good.
Tomorrow afternoon is our big meeting with metabolics and the NICU. Our wonderful primary nurse even swapped her shift so she could be there.
October 21 - Day 50
As you can imagine, we are eager for the tests to get underway to confirm/diagnose if James really has a peroxisomal disorder and if so, what kind. Over the weekend, the metabolics people wanted a whole bunch of blood samples to go out Monday morning (ie today) and a whole bunch of tests to happen (MRI, x-rays, etc...). The NICU people, however, put the brakes on several of these tests, at least until we can all sit down (NICU, metabolics and us) together and discuss the whole situation. That meeting is not going to happen until Wednesday afternoon.
They are going to send some blood tests out tomorrow, but as of now, I don't think the DNA test that identifies the kind of disorder is one of them. We are trying to get to the bottom of that. Many of these tests go to labs in the US where Obamacare ain't like Harpercare, so that may have to be sorted out. James had an MRI scheduled for tomorrow but that had to be cancelled because he is on the Jet ventilator and you can't do an MRI when you're on the Jet. So there is lots to sort out. He did have a full body x-ray today.
The involvement of metabolics is going to really complicate James' care. If it turns out that he has this disorder, which is as foreign to the NICU doctors as it is to us, then the NICU doctors will be turning to the metabolics people for input on nearly all aspects of James' care from nutrition to medication. But at the end of the day, the NICU staff are in the driver's seat so to speak. So that's where we are at. Wait and see. But right now the waiting is harder than it ever has been. I understand the DNA test will take 2 - 3 weeks (that's on a rush) and it hasn't gone yet.
James had an otherwise good day with his oxygen levels coming down into the 40s, back on full feeds and a 3 hour cuddle with Mom this evening.
October 20 - Day 49
We're still digesting the news from yesterday. It has been an emotional weekend. There is part of us holding some hope that the Metabolics people are wrong, but we also know we will have to accept whatever is to be with James. We love little James so much.
Yesterday, right before we were delivered the scary news, at the end of his rounds, James had a major episode that quickly turned into an emergency. He had vomited and in doing so sent milk into his breathing tube. This meant that he was "aspirating" and they pulled out his tube, bagged him, and then re-intubated him without any time for medication. It was a flurry of activity and likely meant a pretty big setback for his lungs.
They did a chest x-ray yesterday and saw one area that appeared to be "aspiration" (which I understand as food in the lungs). This can lead to pneumonia or an infection that might appear in ~48 hours. The good news, tonight, was that they did another chest x-ray and it looked to be good. The area that was showing aspiration yesterday was not showing it today. So we may have dodged a bullet there, but again, it is always day to day.
So putting aside the devastating news about a likely genetic disorder, today was a good day for James. His oxygen requirements came down to the 40s and best of all he had a long afternoon cuddle with Mom and with GG at the bedside. It was his first cuddle with Joanne in several days as she was fighting a cold last week.
October 19 - Day 48
Today was devastating. About six hours ago we were given some of the saddest news you could ever hear as a parent. We met the specialist from Metaboilics who told us that there is a 95% chance James has a very rare genetic disease. Something called a peroxisomal disorder. I've never heard of this either. It is a name given to a family of rare diseases within which there is a pretty broad spectrum. But from what we understand, the various forms of the disease range from bad to worse. The most severe, which James surely does not have, is something called Zellweger syndrome. Kids with this syndrome don't move much and are unlikely to see their first birthday. On the other end of the spectrum, there are more mild forms of peroxisomal disorders but mild is probably a euphemism. Whatever form of the disease you have it seems it affects brain development, major organs and in particular the liver, hearing, vision and possibly the muscles. There is no known cure or treatment. We're still in a state of shock and don't know the full extent of what is going on or what the future holds.
They are going to send out many blood samples to labs in the US to get a full diagnosis to confirm that he has this disease and if so, to identify what kind or form of the disease he might have. We will get the results in 2 - 3 weeks. Right now we have a lot of the same questions that you might have too. There is a remote 5% chance James doesn't have this disease and there is a fairly good chance, based on how he has done so far, that he has a more mild form of the disorder, if he does have it.
There was some other crazy stuff going on today but nothing compared to this. Please say a prayer for James. All we want to do right now is cuddle him.
October 18 - Day 47 - "Highly Suggestive" Evidence of Something Extremely Rare
James did fine today, same as yesterday for the most part. But there was lots to stress about. Well two things to stress about, neither of which we really should be stressed about. But you can't really help it.
First up, we had a visit from the "Metabolics" people. Today was the junior person who went through the file and wrote a little report. Tomorrow the more senior person is coming to talk with us. The starting point for all of this is that James had some shakes around day 20 (which can be normal and hasn't really been happening since) and they found slightly higher levels of some acid in his blood (also common for neonates). As it turns out, this acid could be a marker for some crazy totally rare genetic disease that I've never heard of and can't spell or pronounce.
Since last night we have been going a little nuts reading and talking about these remote and rare possibilities. We know we shouldn't because James most likely does not have the kind of stuff they are looking into. But when someone writes a report that uses the words "highly suggestive" of [insert name of crazy rare disease here] you can't help but get stressed out. If something is extremely rare, don't you think that nothing would really be "highly suggestive" of it being there? To give you a sense of how rare this stuff that they are looking into is, we were told by two doctors today (non Metabolics people) that in over 20 years of working with premature babies they have never seen a kid with these sorts of diseases.
We've been through this kind of stuff with each of our kids and it has given me a thick skin. They do blood tests and something is out of whack and suddenly Claire was "twice as likely" to have down syndrome when in reality it was a less than 0.05% chance and guess what, it didn't happen. Ditto for Audrey. Without trying to be wilfully blind, I've learned you have to be able to understand risk and odds when you deal with the medical world. You have to be able to say to yourself, I'm not going to worry about the unlikely because it is unlikely. But the medical world does the opposite. They worry and look into the unlikely so they can rule it out. It's not easy to stay sane when that is happening. So we'll wait and talk to the Metabolics people again tomorrow and they're likely going to run a bunch of tests that will take several weeks before we find out whether James has some crazy rare disease (which the odds are he doesn't have and I am going to guess he doesn't have).
The other worry of the day was that the nurse noticed he had a bulge in around his private parts. They thought it might be an inguinal hernia, which as we learned today, is common in boys under 28 weeks, and can result in surgery in some cases. Wish I knew that before. So some surgery people came and looked at him and they determined that it was just a hydrocoelle" (pronounced hydro-seal) meaning some extra fluid that will likely go away on his own and does not require surgery. James may need some extra large underwear, but nothing to worry about for now.
October 17 - Day 46 - Turn back up the O2
The 35% O2 was short lived. James is back up to the 50% - 60% range. It is so crazy how one day to the next can change so much. Aside from needing more oxygen, James was very steady today.
There was a note in James' binder from this afternoon saying that people from "Metabolics" came by. The note said he could have some condition. Back on day 20 or so when he was having the shakes they sent off a bunch of blood work, urine samples, etc... for testing. Some of those tests take a long time and are sent to far off labs in other parts of Canada or in the US. Apparently one of them has come back showing higher levels of some acid which means they are going to be doing more tests. Metabolics will be by tomorrow and we will be eager to hear what they have to say, but I suspect it will be a whole lot of "it could be this or it could be that... or it could be nothing... we're not sure and we'd like to do further testing" and so you can't stress out or start googling "crazy rare disorder" or you can drive yourself nuts.
James met is other grandma today as GG arrived from London. First stop from YVR was a visit to the NICU. So we can switch back to man-on-man defence for the next week. It also means that James will have an extra nurse looking after him this week.
October 16 - Day 45 - Turning down the O2
This morning James needed between 50% and 60% oxygen to maintain healthy saturation levels in his blood. By dinner time he had come down to 35% as pictured on the left. That's a pretty amazing gain for one day. I wish I understood how and why James can change so much from one day to the next. Sometimes it can be as simple as whether he is on his back or his tummy. Other times it can depend on whether they suction fluid from his lungs (or how much). Maybe it depends on whether it is raining outside. Whatever the explanation, we'll take a day of progress over a day of regression any time.
James had some good poops today and a 2 hour cuddle with dad in the evening. Report on the brain ultrasound yesterday came in and it looks normal. His feeds have been spread out over the course of an hour and a half after he spit up a few times during feeds. Since he is fed every two hours, that means he only has 30 minutes to rest in between eating. That's roughly the eating schedule I used to follow when I was 14. I'm amazed that they would stuff him full of so much milk, but they obviously know what they are doing. Joanne is drinking OJ in similar mass quantities hoping to shake the cold that has kept her from the NICU since yesterday morning.
October 15 - Day 44 - Back to Work After the Long Weekend
James had a busy but good day today. Still on between 50% and 60% oxygen but he was stable again today. The discussion on rounds today was about his growth. James started out as one of the smallest babies around. He's more than doubled in size but he is still around the smaller percentiles. So they want to try to increase his protein and turn him into a beefcake. They supplement the breastmilk with some added formula which they can adjust.
James had a chest x-ray, a brain ultrasound and by the time his eye exam started he had enough and desaturated hard enough to end the eye exam early. So they'll try that again next week. The ultrasound and the eye exam were routine, scheduled things and neither of them appeared to raise any red flags, but we won't know the full details for a day or a week.
James also had another blood transfusion this afternoon because his hemoglobin was low. He ended the evening with a 3 hour cuddle with dad. The cuddle wouldn't have happened if it wasn't for our wonderful nurse. The respiratory therapist on tonight was on the other day when James was cliff jumping and so it took a little convincing to bring James out of the isolette. James was a star, just a little sweaty going back into the isolette.
October 14 - Day 43 - Back on Track
James is too cool to be predictable. After some nose dives yesterday, today James was back on track. His oxygen support came down, he was fairly stable, blood gasses were good, and he weighed in at 1700 grams (3lbs,12 oz).
After his breathing stabilized overnight, rounds this morning were pretty uneventful. The plan was to stay the course. No discussion of juicing James up on roids. They even took his PICC line out today which he has had since about day 4. This was the line though which he would get his IV powerade, antibiotics, fats and lipids, etc.... Now that he has been on full feeds for a few days and finished antibiotics, the line was no longer needed so they pulled it out as it could potentially have been a source for infection. This frees up his right foot for poking for blood gasses so his other heel will get a break. This also means the only apparatus next to his isolette is the jet ventilator. The IV pole is no longer there.
James had a 3 hour cuddle this afternoon with Dad. We'll score this one a good day.
October 13 - Day 42 - Cliff Jumping
Since yesterday evening James' lungs have gotten worse and worse. He is requiring a very high level of oxygen and every so often his oxygen saturation takes a cliff dive requiring them to give him almost 100% oxygen for him to maintain healthy levels. Then they turn down the oxygen and he does ok for about an hour and then, yikes, another nose dive on the oxygen levels. They have raised his ventilator settings so that the ventilator is giving him much more assistance. In other words, moving backwards, regression.
Clearly, James' lungs are in rough shape. They will get better in time, but at the rate things are going, we're in for a very long tour in the NICU. About a week ago, when James had a few bad days, they raised the subject of giving him some steroids to get him out of his funk. But then he seemed to turn himself around on his own. Now that he is back in a slump, we expect the conversation tomorrow, or Tuesday, will be about possibly juicing James up on some roids in the hopes it will turn his lungs around. They're not the kind of roids that Ben Johnson made famous in the 80s but ones that were commonly given to premature babies many years ago. Then studies came out to show that the steroids had bad side effects in terms of growth restriction and brain development. So now they use them sparingly and in much smaller doses than in years past. The smaller doses used nowadays, so we're told, are said to not produce the harmful side effects. And there is no guarantee they will turn things around. Obviously, it would be better if James could come out of this on his own, but plummeting oxygen saturation is not good either so it is kind of a 'pick your poison' situation.
Other than the lung department, James is doing quite well. He's at full feeds, is growing well, looks good and is pooping like a champ. I can't believe how much he has grown in fact. Just seeing his head in the isolette it looks so much bigger than the little cue ball he had when he was first born.
James had a nice visit from his big sisters today. What did Audrey notice? He had panda bears on his sheets.
October 12 - Day 41 - Zone Defence
Early this morning Grammy and I were on the Canada line heading to the airport. After 41 days of gourmet cooking, praying, rosarys, reading to Claire, Audrey AND James, cleaning, pickups and drop offs, meltdown diffusion, walkathons, gymnastics, music, swimming lessons, chauffeur service to the hospital, Grammy has left for Toronto. I noticed the box of Barry's decaf was in the recycling bin so it was obviously time for Grammy to go.
She leaves a year older, with James twice the size as he was when she arrived and much more stable. Audrey is nearly writing her name now, Claire is reading and playing twinkle twinkle all the way through, we have clean clothes in our drawers, ironed shirts for me, Claire's Halloween costume is made, and the freezer is full of various soups and dinners. All in a month's work for Grammy.
Not only will Grammy be missed greatly by all of us, but the various bakeries around Vancouver will lose one of their best customers. This includes Solly's, Terra Breads, Dirty Apron, that really good bakery on pacific by the aquatic centre and her top recommendation, the bakery at the pacific institute of culinary arts on Granville island where Grammy usually exits with about 4 brown bags in her hand. Pops can now look forward to ending his diet of frozen burgers and expired food.
Grammy's contributions were not just at home, but also at the NICU. She was there to console, in both Irish and English, Mary from Cork who works at the NICU reception, after the heart breaking rematch loss in the all-Ireland GAA hurling finals at the hands of Shane O'Donnell and County Clare. She was also able to assist the neonatologists, particularly the two from N. Ireland, with expert scientific opinions to explain some of James' mysterious behaviour. For example, she could explain things like James' blood sugar or his twitching by reference to whether it came from the Cleary or the Kennedy side of the genes. Invaluable information for the neonatologists.
With Grammy's departure we will be adjusting from 'man on man' positional play and starting 'zone defence' at least for a week when GG rolls into Vancouver.
As for little James, he reaches full feeds today which means the powerade IV will stop and his morphine will also switch from IV delivery to oral. He gets the last of his antibiotics today and the infection appears to be a thing of the past now. He was up and down this morning in terms of his O2 saturation, but leveled out as the day wore on. Afternoon cuddle with mommy too. Mostly good news and progress.
No shortage of things to be thankful for this weekend.
October 11 - Day 40 - 34 Weeks Today
Today was a good day for James. Although he still needs a high level of oxygen, it came down over the course of the day and he was pretty stable. He had a wonderful cuddle with mommy in the morning, which set him up well for the day. No major changes, feeds continuing to go up, puffyness going down, all good signs. His blood work is improving as well, platelets and hemoglobin are up. A good way to head into the thanksgiving weekend. James is 34 weeks today.
October 10 - Day 39 - More Up and Down
James was up and down today, also known as labile. He was requiring fairly high levels of oxygen. Because of this, they didn't want to bring him out for a cuddle today which was disappointing.
Although James can't talk, if he could, we know he would wish his cousin Hayden, and his wonderful Grammy a happy birthday. Grammy leaves Vancouver on Saturday morning after 40+ days of being here for the emotional rollercoaster that it has been. We could not have done this without Grammy's help. She is a saint. And she turned 39 today.
October 9 - Day 38 - Resting After a Busy Day
Today there was nothing on the agenda for James other than eating and sleeping. All his ventilator settings stayed the same. His double chin is starting to come down which is good. Blood gasses were fine. He had a big poop today as well. His feeds are up to 9mL every two hours. His oxygen needs are up pretty high but hopefully that will come down in the days ahead. A little up and down on his oxygen saturation this morning but during and after a 2 hour cuddle with mommy he was stable.
October 8 - Day 37 - Extubation, Take 1
What a day. It started at rounds with discussion of why James wasn't doing as well with the ventilator settings lowered. The doctor, who I didn't really know, suggested that his tube might be clogged up with gunk and that they should swap out the tube.
This came as a bit of a surprise, but it seemed to us, if they were going to pull out his breathing tube, why on earth would they put in another one right away? Why not give James a shot at the CPAP machine? After all, that's the goal and they were almost ready to extubate him two weeks ago.
So we lobbied for James to be given a shot. He deserved a chance to prove he could play in the big leagues. He is 33 and a half weeks. Having a tube down your throat is not fun. But the docs like to extubate when they think kids are ready, and James wasn't there yet. Nevertheless, you hear stories of kids who pull their own tubes out, and then surprise everyone that they can breathe just fine on the CPAP. We were hoping James might be one of those kids.
So at 2:30 today James' tube came out and he was put onto a CPAP machine. It was quite the spectacle. They were putting him on a very new machine. It was so new that the corporate rep (in a suit) was there from the company that makes the machine. There was also a respiratory therapist (RT) from the company specialized in the machine on hand. Plus 3 of the more senior RTs in the NICU were there. And a team of doctors and nurses. And Mommy and Daddy saying a few hail marys.
Well James surprised almost everyone and did very well in the transition. There was no major ups or downs, just steady. They adjusted the settings, tightened up the little mask over his nose to get a good seal, and seemed to have things under control. They even wheeled the jet out of the room.
But after about 20 minutes of highs, James' oxygen saturation was coming down. Turns out he is more of a sprinter than a long distance runner. He was requiring a lot of oxygen to maintain proper levels. His whole body was compressing as he took each breath. So unfortunately he was sent back down to the minors. Roughly 2 hours after the tube came out they put the tube back in (well a fresh clean one) and he's back on the jet where he began the day. It was obviously very disappointing, but James did his best and we're proud of him.
We're glad he got the chance. We're glad he did as well as he did. We know he'll get there it is just going to take some more time. This may happen 2 or 3 more times in the months ahead and now we have some idea of what to expect. Today came as a surprise and James' inflammation and the fact he is coming fresh off an infection did not make his chances of success very good.
He's pretty knackered at the moment. But he's doing well. And he has a nice clean tube into replace the crusty yellow one they took out.
October 7 - Day 36 - Weaning off the Ventilator
Today was the first day in a long time that the discussion around James was about weaning him down off the ventilator. That is what he needs to do in order to move forward, but there have been so many sidetracks and setbacks along the way, that it has been on the backburner for quite a while. They are dropping some of his settings hoping he can still run good blood gasses. It may take a while, but it is a step in the right direction.
October 6 - Day 35 - From Labile to Stabile
Although James continues to be puffy, he's coming along well and had a good day today. His vital stats continue to be stable. For most of the day he stayed pretty consistent this weekend.
Still no word from the lab identifying bacteria in his blood culture and it has been 48 hours so that's also good news. He may have solved his infection and he can probably keep his PICC line.
In his new isolette they were able to get a more accurate weight and he tipped the scales at 1400 grams, which is just clear of 3 lbs. He's clearly storing a little extra fluid in his big double chin but even accounting for that, it's a pretty good weight. He is up to 3 mLs every two hours on his feeds. He hasn't pooped in a while but he's only been back on tiny amounts of real food for a few days.
Like the Canucks and Leafs during their home openers last night, he is showing some grit and feistyness. But he was as calm as can be when he was out for a cuddle this afternoon with Daddy. He also had a visit from his big sisters. A good day all around. Keep up the good work James.
October 5 - Day 34 - Holding Steady
A couple pieces of news today, mostly positive. The report came back identifying the precise kind of bacteria he has and with that, a list of the kinds of antibiotics that work effectively to fight the specific bacteria. It turns out the one he is already on, the one that starts with a V, was on the list. So that's good, he's been getting the right antibiotics for the past two days. The other news, is that we have not yet heard from the lab regarding the blood culture they took last night. This means that, for now, the bacteria may not be appearing... yet. That could change over the course of today, or in the days ahead, but for now no news is good news. If the blood they took yesterday is no longer showing the bacteria that means the antibiotics are working AND it also means that they may not have to pull his PICC line. Again, all this could change within hours, but for now, things look better on that front.
James gasses continue to be good and his breathign stats are fine but he still looks puffy and a little pale. His blood report was low on something called albumin, so he's getting a dose of that to boost his levels. He also got a nice afternoon cuddle with mommy. And he is getting a new isolette, since his last one doesn't seem to be giving accurate weights (apparently he's gained about 10 pounds!) and they base the doses of almost everything he gets off his weight.
October 4 - Day 33 - Still Puffy, Daddy
James continues to have the big double chin - a clear sign of the infection he is fighting. They are sending more blood tests to see if the bacteria is still present. If it is, they will pull his PICC line as the bacteria could easily be in there. Then they wait a couple of days, do another blood culture and if he's clear, they can put another PICC line back in. Otherwise business as usual.
James is 33 weeks today.
October 3 - Day 32 - Mommy Medicine
Today was similar to yesterday, except for the fact that Joanne dropped her cell phone in the toilet this morning (she didn't do that yesterday). James continues to be a little puffy, his breathing is going well and we're keeping a very close eye on him hoping this infection gets better and not worse. An infection in a NICU baby can be very serious, even fatal. When the infection is in the blood that means it is travelling around the body to various organs. It can take over and lead to organ failure. But James has a common kind of infection and so far, other than the puffyness and slight changes in blood pressure, he doesn't seem to have other major symptoms. He is peeing well, breathing stats look good, gasses are good as are the other vital signs. We're praying it stays that way and that he gets better over the days to come. Fighting the infection is again priority #1 and so plans like getting off the ventilator, are on the back burner for the time being.
The blood work has come back narrowing down the kind of the bacterial infection he has. It's one of those long medical words I cannot spell or pronounce and so the new antibiotics (also a long medical word I can't pronounce, it starts with a V) are targeted to beat up the bacteria. They don't know for sure if the source of his infection was his PICC line. His PICC line, by the way, is an IV line he's had since about day 2. It goes in around one of his ankles (taped to his leg) but it is a long line (made out of some microscopic silk-like tube material) that runs up through one of his veins so that the end of the line is pretty close to his heart. Absolutely amazing how they can do that. He gets medication and IV fluid through the PICC line. If they suspect his infection came from his PICC line, they would have to take it out and wait a few days and then run another one once the infection passes. We're not there yet. It's not clear how the infection developed.
Joanne got to cuddle James for a good 3 hours this afternoon. His feeds are also upped to 2 mLs of breastmilk. Let's hope the mommy medicine sets James on the path of recovery.
ps - don't bother texting Joanne today.
October 2 - Day 31 - Another Bacterial Infection
Just as James was finishing his course of antibiotics to get him over his previous infection, a new bug has shown up in his blood. They know the family the new bug belongs to but not the exact kind of bug. That info will come over the next few days. They have started new antibiotics to target the new bug. James has puffed up with this new infection and has a double chin like a pelican. He also had his 3rd lumbar puncture and thankfully so far the preliminary results of that show the infection is not in his spinal fluid (which means it won't have reached his brain).
But on the other hand, his lungs seemed to have improved. He's come a long way on his O2 needs and his ventilator settings continue to come down. The doctor says these signs are good but we will have a close eye on James over the next few days. Hopefully these antibiotics work quickly.
James started back on breastmilk today as well (tiny amounts) and they will work their way up gradually over the days to come unless things go sideways. From the sounds of things he could use the extra anitbodies in the breastmilk.
October 1 - Day 30 - One Month Old
Hard to believe it was one month ago that James was born. What a ride it has been. It's been a crash course in neonatology 101. With James still on the ventilator and extubation (ie switching off the ventilator to a CPAP) not terribly imminent it is starting to sink in that we are likley going to be in for a longer, rather than a shorter, NICU experience. There is still hope that we may be able to bring James home before Christmas, but we're not counting on anything. It is always day to day and we know that.
A lot of kids go home around their regular due date. Ours is around November 18, but we're not expecting to go home that early. A lot of kids are in the NICU for 6 months or longer. To graduate from the NICU it's pretty simple: you have to pass breathing 101 and eating 101. Easier said than done. Especially the breathing part. James is still working on the pre-requisites. But we'll get there. Every kid goes at their own pace.
James did fine today. The usual round of desats (O2 level drops temporarily) but his gasses were good and no major problems. He was supposed to start back on feeds today but that didn't happen so maybe tomorrow. One of the head neonatologists is supposed to be back tomorrow after being away the past several days. He's a real "take charge" kind of doctor and he spent a lot of time last week getting to know James and we expect he will set a course for James. Although really, James is the one driving the bus and it is James that will ultimately set his own course.
Congrats on surviving your first month of life in the NICU James. Pops, maybe you can send out my 1983 Topps baseball sticker book with Reggie Jackson on the cover to put by James' isolette (for a little inspiration as we head into October).
September 30 - Day 29 - 3 Hours of Cuddles
Early this monday morning we awoke to a phone call from the NICU. Terrified to answer, it turned out to be our favourite Pediatrician on the line wanting to let us know that overnight, while James lungs had improved considerably, his blood pressure had been dropping at times. So they had started James on medication to increase his blood pressure. If it's not one thing, it's another. James was stable, but they were keeping a close eye on him. He was going to be first up on rounds this morning.
There were 10 people discussing James for about a half an hour today on rounds. The end result was to watch him closely as they kept him on the heart medication, and wean some of the ventilator settings to decrease the pressure his now improved lungs were exerting on his heart. James also had another heart ultrasound and things appeared normal. And some folks from "Infectious Diseases" came to see him and review "his very big chart" to see if there is something they are missing. Lastly, Endocrinology also came to see James, as he has fluctuated at times in terms of both his blood sugars and some other lab work. All of it made for a busy morning.
But as it turns out, what James really needed most was a long overdue cuddle with mommy. He has been so up and down as of late, battling an infection and switching ventilators, that opportunities to cuddle have been few and far between. Jo was very emotional when the talk of a cuddle came up. With the help of 3 respiratory therapists and James' nurse, James came out for a 3 hour cuddle this afternoon. He fell into a deep sleep as Jo choked back a few tears of joy, relief, and pure mommy bliss... James and Mommy both needed that cuddle.
September 29 - Day 28 - Labile
James continues to be up and down. In medical-speak, they call it "labile". One minute he is rocking the show, with all his numbers right where they should be and his O2 needs decreasing. Two minutes later he plummets. Then he recovers. And it goes on. The goal of the NICU is stability and James has everyone scratching their heads.
Today the medical team are debating whether the best approach is to knock James out with medication in order to let the ventilator work properly (the meds are aimed at preventing him from fighting the ventilator) and keep his numbers in check, or the opposite, give him caffeine and let him do more of the breathing to get his numbers up. Maybe even switch him back to the conventional ventilator. Obviously it would be preferable for him to move in the direction of doing more himself, but if it leads to more instability then things just get worse.
Late last night James had a chest x-ray which didn't look very good. When the picture of the lungs is fairly cloudy and white, that's not good. He had an x-ray like that around day 5 or so, then he turned around a few days later. It's not entirely clear whether the cloudy x-ray means that he has fluid in the lungs, or is due to his infection/pneumonia, or what. Whatever the cause, it is safe to say that the route of James' problems right now are his lungs. Over time, the lungs should repair themselves. As he grows, he grows more alveoli (tiny sacs in the lungs that perform gas exchange). But right now it feels like we're in a bit of a rut.
As the afternoon wore on James improved and came down significantly on his oxygen needs. They even started to wean him down on his settings for the first time in several days.
September 28 - Day 27 - Rainy Day Vancouver
James has been up and down today. On the positive side of things, he looks fairly content and he had the pleasure of meeting his great aunt and uncle from West Virginia today.
On the other hand, James is requiring a fairly high level of oxygen these days, and he swings from oxygen high levels to oxygen low levels somewhat regularly. His blood gasses are slightly above the range they like to see. He seems to be slowly regressing in terms of how much help he is needing from the ventilator. It seems more like a day of moving backwards rather than forwards. Maybe it is his infection or maybe it is the condition of his lungs right now.
The doctors have consistently told us that he will recover from this and his lungs will get better, we just have to be patient.
September 27 - Day 26 - Spinal Tap
Today was a fairly good day for James, as he continues to recover from his infection. He was back to his usual spot near the end of rounds this morning which is a good sign. A good way to start into the weekend. James would have been 32 weeks today.
Late last night he had another lumbar puncture. This time the neonatologist (ie NICU doctor) performed it (rather than a resident who did the previous one) and they got a good clean sample. The reason they did this is because in a small minority of cases, the kind of infection that James has can spread up to the brain. By testing his spinal fluid for presence of the bacteria they can rule that out. They also worry about menengitis anytime there is an infection and the lumbar puncture is they way they test for that. The preliminary results late last night and today show that James is ok on those fronts, so a few less things to worry about.
September 26 - Day 25 - New Vent and New Insight
James is continuing to recover from whatever bug has knocked him off his game this week. Today brought new light on the situation and also a new ventilator.
Two days ago they put him on the old school "oscillator" ventilator. Putin must mave called and asked for it back, because today they decided to switch him to a new one called "the Jet". In addition to having a cool name, this ventilator is said to be better at helping him clear fluid from his lungs. So far so good. Chest x-ray this afternoon was looking better. Gasses were good.
Lab results also came in and they found a bacterial bug in the secretion they suction from his trachea tube. So he probably did not have a viral infection from touching and has a bacterial infection as the likely reason for feeling unwell. Knowing the type of bacteria, they know what kind of antibiotics work best to fight the infection. The antibiotics that he was first given when they suspected something was up, were the kind of antibiotics that would work. So they may have already worked. But to be sure, they have switched him back to targeted antibiotics specifically designed to fight the infection he has developed.
James will continue to be off breast milk and strictly on IV for the next several days. We hope that he settles down on the jet and that the antibiotics run their course and James gets back to fighting form. It is reassuring that they have seemingly identified the problem. So we are cautiously optimistic that James is turning a corner. But always on our toes.
September 25 - Day 24 - James on the Mend
James is living up to the NICU motto of two steps backwards, one step forwards. James had a good day today. We are very relieved to see him taking a step forward again. He spent the night on the 'paralyzer' medication and everytime he started to move they gave him another dose. He remained stable (and still) throughout the night. As the meds wore off early this morning James was again behaving himself (desats few and far between) so they kept him off the meds for the rest of the day.
The results were trickling in from the various blood and urine tests and most of them were coming up negative, meaning that it looks like James does not have a bacterial infection. The antibiotics he has been receiveing were designed to fight a bacterial infection. So they suspect he may have a viral infection, meaning something he may have picked up from someone's touching him... or from his ventilator... or he's just caught a cold or some bug that isn't necessarily cured by antibiotics. We all wash our hands like crazy before entering the NICU so it is surprising that he would catch something viral. But it happens.
I don't think we're completely out of the woods yet, James' blood sugar, which started this recent slide, has been a little erratic. There is also a possibility that a bacterial infection could be there as some of the tests take time. But his gasses and oxygen levels and heart rate were all good today. X-rays are looking mildly better too. He's looking a little better too. And there is talk about taking him off the oscillator ventilator tomorrow (to go back on a regular ventilator) if things keep up. Lastly, they were also able to successfully place an arterial line on him today (previous attempts failed) so his poor little left heel doesn't have to get poked every 4 hours for blood samples. That one heel has easily been poked over 25 times in the past two weeks alone. Now they can take blood samples from the tap. It also gives them a more accurate measure of his blood pressure. So we'll call this a good day on the NICU roller coaster.
September 24 - Day 23 - Cold War
Today was another day of setbacks for James. A good indication that things aren't going well, James was first up on rounds today. The full diagnostic report won't be in for a few days when the blood work comes back from the lab. The chest x-ray last night suggested he has some form of pneumonia. They are also wondering if he has a stomach bug based on his abdominal x-ray. James is on antibiotics, originally targeting the pneumonia but then they switched to medication to target his gut. James is off breastmilk for the near future so he's only getting the powerade.
He's also been demoted to the oscillator ventilator after an unstable day of desats (O2 level dropping). This is the kind of ventilation he had from approx day 3 to day 10 that I called the "shaker". But the one they brought in today looks like a cold war era relic that may or may not have been purchased from the soviets. It is pictured on the left. I also added a photo on the right side of the number of hours this baby has cranked out. This kind of ventilator rescued James on day 3 when things went south and it is doing it again. They have also loaded him up on meds to basically 'paralyze' James (their words not mine!). The docs philosophy is that if the baby is sick he's taking over and James' only job is to fight the infection. He's not allowed to use any energy for anything else but getting better. He's got 1 on 1 nurse care tonight. He's just lying there in 100% chilled out mode.
I asked and they don't have any extra doses of the "paralyzer" meds in gummi form lying around the NICU. Claire could benefit from a dose about 10 minutes before mommy has to leave for the hospital.
So that's the news today. A couple steps backwards again. Hoping the antibiotics run their course and James gets back in fighting form soon.
September 23 - Day 22 - Possible Infection
I think one of the expressions of the NICU is that you take two steps back and one step forward... or something like that. James had a hard day today and took several steps back. There were a lot of desats (oxygen level momentarily dropping) and his blood sugar was low. His poops weren't looking good and something is definitely up. They suspect he has an infection of some kind. The tests went into overdrive. He's since had abdomen and chest x-rays, lumbar punctures, blood drawn several times, a catheter, and lots of other pokes and turns. Some of the results are instant (like x-rays) while others take 1 or 2 or 7 days to come back from the lab. They have started him on general antibiotics and if they confim that he does in fact have some kind of infection, and if they can figure out what kind, they can give more targeted antibiotics. Best case scenario they can identify the problem and within a few days the antibiotics will run their course and James will be back in fighting form. The abdominal x-ray looked OK, nothing obvious as being problematic. The lumbar puncture didn't get a successful sample although they could tell from what they got that there are no obvious bugs there. The blood work will likely tell the story which we should find out in the days ahead.
His ventilator setting are back up to where they were three days ago. So much for the gain over the weekend. I think I like the NICU more on the weekend.
September 22 - Day 21 - Three Weeks and Counting
Another good day for James with nothing on the agenda but sleeping and eating. Feeds have increased to 10 mL every 2 hours. He was further weaned down on his ventilator settings and he is handling it well. So, for example, the ventilator setting for the rate at which it helps him breathe is dialed down to 40 from 55 a few days ago. They drop the rate by 5 then check his blood gas (measuring the CO2 level in his blood and other things) and if the gasses look good they dial it down another 5, and so on. The weaning process is going a little more gradual this time. The last time James went through this they would drop his rate by 10 and now I'm there at the bedside, with 3 weeks of NICU experience under my belt saying, 'how bout we just go by 5?'. The ultimate goal is to get the machine down to the point where it is doing as little as possible and his blood gasses and oxygen rate are within a healthy range. He can over-ride the machine and they want to see him doing that. When he can show good numbers and gasses, he is "extubated" meaning the tube comes out of his trachea and he switches to the next level of breathing machine: a C-PAP. The C-PAP is a more Darth Vader style of contraption with a little tiny mask over his nose connected by headgear. Without the tube down his throat he will be able to do important things like suck his thumb.
We've also been debating risk vs. reward on the various follow up procedures that can be done to look into James' sporadic twitchyness that started this week. It is totally normal for babies in the NICU to twitch a little. It usually lessens as they reach term we are told. As I mentioned in an earlier post, James does twitch every now and then but he's done it with enough intesity on at least one occasion to raise some MD eyebrows. He had the EEG test on Friday and that came back clear. But there are about 4 other 'follow up' tests we could do ranging from a MRI to a urine test. The doctor who has been on call for the past few days is one who seems to err on the side of thoroughness and would have every test under the sun done even though he thinks the twitching is most likely nothing to worry about. One of the possible tests involves drawing spinal fluid out to test it (a 'lumbar puncture', kind of like an epidural). Despite their reassurance that this is fairly routine and low risk, it seems a little much at the moment. We'd like to spare James from any extra pokes, especially ones in the vicinity of his spinal cord that are only done to rule out rare and remote possible issues. Every poke brings the risk of an infection which can be very serious to a little guy like James.
James was born three weeks ago today. He's grown well since then. We hope this week sees him say au revoir to his ventilator.
September 21 - Day 20 - Chilled Out Entertainer
James had a much better night and is having a great day today. The NICU is a lot quieter on the weekend and that is exactly what James needs right now. Nothing new at rounds today, the plan for the day is for him to basically be a chilled out entertainer. James feeds are up to 8mL every 2 hours and he had 2 big poops today. There has been minimal handling of him and that's the way he likes things. Sleeping, feeding and growing. That's what babies are supposed to do. James blood gasses are right where they should be so they are back weaning him down on his ventilator settings. We've been down this road before only to take 3 steps backwards, but hopefully now James can keep the positive momentum going.
We were supposed to be on the beautiful sandy shores of lake michigan this weekend for my cousin, Evvie and Mark's wedding. Congrats to the happy couple, we wish we could have been there to celebrate.
September 20 - Day 19 - Shakey
Yesterday I wrote about protein shakes. Today there was a different kind of shake going on. You know those sudden twitches that you sometimes have when you are sleeping? James was having some of those today but in a more alarming way. He did this the other night when I was holding him but today he did it in a big way during rounds so everyone could see. Joanne had picked it up and alerted everyone. The docs said that these sort of twitches are common in premature babies, but what they were witnessing was a little beyond the scope of what they usually see. They asked Joanne to film it on her phone and they wanted a neurological assessment (ie they called in the brain doctors). The neurologists did an EEG test this afternoon which meant sticking about 20 little probes to James' little cue ball cranium. They were concerned he was having seizures. He did some shaking while they were monitoring him (which they said was 'good' - although not as prolonged or pronounced as this morning) because they wanted to see what the brain waves looked like while the shaking was going on. After the neurologist looked at the results the report came back clear. Everything seemed normal. Another one of those, my life could change in the next 5 minutes moments, when the report came in. They still want to pursue some more tests to see if there is any rhyme or reason for his prolonged twitching, so Neurology will stay involved for now.
On top of the brain scare, James had a rough night last night with lots of desats (O2 level dropping). His blood gasses were really bad this morning. So they did a chest x-ray and it looks like one of his lungs had partially collapsed and the other one was over-inflated to compensate. This likely explains James' less than stellar respiratory performance (ie regression) over the last few days. They have switched up the modes on his ventilator several times over the past few days and something didn't agree with him. So they put him back on a pressure setting that will hopefully re-inflate his lung and sort things out. All in all, today was a rough day. He can't get off this ventilator soon enough.
We're keeping a close eye on little James. He is 31 weeks today.
September 19 - Day 18 - Protein Shakes
Another day with a slight increase in feeding and steady growth. New for James today is that he is starting to get some protein powder mixed in with his breast milk. He gets a half serving today and a full serving starting tomorrow and then over the next few days. As his feedings increase, his IV powerade intake decreases until he gets to the point of being exclusively on milk. One of the nurses said that as a very general guide they like to see 30 grams of weight gain each day.
Joanne was able to hold James in the afternoon today, although he was acting up more than he does in the usual evening cuddles. It is hard to know how much to handle James. When he is overhandled he doesn't do well. His oxygen level drops ('desats') and his heart rate can drop ('brady'). I guess he needs his quiet time with the cover on, hands off. But he also needs cuddles and skin to skin contact. Claire was up for an after school visit to sing some of the new french songs she is learning at big school.
September 18 - Day 17 - The People in your Neighbourhood NICU
James feeding continues to be going well. Everyday they add another mL to his 2 hourly feed and he's tolerating it well. Tonight's weight was 1100 grams so a great sign that his weight is moving in the right direction. Not much change on the respiratory front. Still on the ventilator and I'm not really sure how much I should be worried about that. Some kids spend months on a ventilator but it is not really a good sign. James blood gasses were good today and he received another small blood transfusion today to get his red blood cells up.
I wanted to write a little today about the wide range of children in the NICU. It has been a very eye opening experience for me. You get to know some of your neighbours although some people understandably prefer to keep to themselves. There is also a fair bit of movement with new babies coming in and going out every couple of days.
My sense is that there are about four broad categories of babies in the NICU. The most common type seems to be twins or triplets. Having two or three kids feeding off the same placenta many of them are bound to be smaller and arrive early. One nurse made an interesting comment that fertility clinics have grown by leaps and bounds, leading to many more multiple child births in the last decade but there has been no corresponding expansion to the NICU. There is a new NICU being built but it is about 5 years away. That sounds just like the school situation in downtown Vancouver. They build thousands of condos and then five or ten years later realize there is a shortage of daycares and schools. We've heard one sad story about a family with triplets losing two of their children in the NICU and the third is fighting to stay alive.
A second category of baby we see in the NICU are the children of drug addicts. It is very sad to see but it is a reality of Vancouver. Some of these babies tend to be bigger, don't need breathing help, but may have other issues. Some of them may help turn their mother's life around.
There are also some bigger babies, seemingly normal 8 or so pound infants, but with some kind of unique medical issue. We've seen one baby with its stomach outside its body who had major surgery. Others with a rare heart or lung issue. I think many of these babies are the more 'interesting' ones from the perspective of the doctors in the NICU.
Then there are a number of babies in situations similar to ours. The baby just came early for one reason or another. We've met several first time parents who unexpectedly and spontaneously went into labour. Some at 24 weeks, some at 26, some at 28. I cannot help but feel that the NICU experience would be more difficult with your first child, compared to a second or third child. Being a first time parent is crazy enough, but having the baby in the NICU seems to be the furthest thing from 'normal'.
The other variable in all of this is where people live. There are babies from Prince George, Port Moody and everywhere in between. Some of the out of town families are put up in a house provided by Easter Seals. We met a nice couple who live across the street from us - and the babies are across the room from each other. Neighbours all around.
It all makes us feel really blessed to have the three kids that we have. You are also reminded that life comes easy for many people but not for others.
September 17 - Day 16 - Putting on the Pounds
Today was a good day for James. He is coasting a bit in terms of his respiratory settings (slight modifications in the afternoon) but his feeding has increased. Now that he is eating the big meals (5 mL every 2 hours), he has a fancy pump that sends the milk in gradually over a 30 minute period, rather than the 'down the hatch' style in the mini syringe that he's been used to so far.
With the increase in feeding, James is packing on the pounds. He clocked in at 1034 grams late last night, which is roughly 2 pounds, 4 ounces. They work in the world of grams here so I had to estimate the ounces, which is confusing because it seems there can be either 12 or 16 ounces in a pound depending on what system you use. Speaking of grams vs. pounds, it reminds me of the time my old roomate in university, now avid blog reader, once went into a deli to order sandwich meat, which is normally priced per 100 grams. He asked for some cajun chicken and when the lady asked him how much he wanted he said, "I don't know... 2 pounds?". That's a lot of cajun chicken and I'm glad to say that James now weighs more than that hefty bag of processed meat that spent a few weeks in our fridge about 15 years ago.
James ended the day with a nice evening cuddle with his mommy.
September 16 - Day 15 - Hairy Chest Pillow for James
Today was the first day I held James. After about an hour on Daddy his temperature was 37.4 degrees and a little sweaty. That was a nice end to an otherwise uneasy day.
James is in a bit of a holding pattern right now. He's just not ready to go off the ventilator. The doctor was keen to get him off this morning, which is great because I feel the same way, but the respiratory therapists are saying he's not ready and they are probably right. He has had some regression in terms of the settings he is on. He's taken a few steps backwards. They went back to basics and spent some time with him today using a balloon-like bag to hand ventilate him (something the kids really like) and based on that they were able to tell what little James' lungs prefer in terms of volume and pressure, etc... So they have re-jigged his ventilator settings.
The concern is that James may be experiencing a temporary (we hope) form of lung disease. The word 'disease' gets a pretty unsettling reaction but they seem to use the term rather loosely to refer to even a temporary situation of fluid on the parts of the lungs that convert O2 into CO2. The fluid inhibits their ability to do the conversion. James seemed to be full of fluid for the past few days (his weight was way up the other day) but he's come down now (and his weight normalized towards steadier gain). This is also why they check and watch his blood gasses so closely. James had pretty good blood gasses today at 4PM. But he's up and down and needs to be more consistent. As he gets rid of the fluid, he then is able to get his lungs working as they should and that shows up in the blood gasses results.
His feeding system (stomach and bowels) seem to be working well so hopefully he continues to feed, grow and gets stronger so that he can break out of the plateau he seems to have hit in the lung department.
September 15 - Day 14 - Good pictures but bad gasses
Today at rounds the main discussion was whether James is ready to be extibated (ie come off the ventilator). They decided to have a chest x-ray done, take his blood gasses and then make a decision.
I've been trying not to be an armchair quarterback. On the one hand, as a parent, you are with your baby everyday and probably know him best. You saw how he reacted to stuff on day 2 or 8 or 14. When a doctor or nurse looks at his chart for about 8 seconds and says let's do this or let's do that there is a tendency to want to pipe up and give your parental expert medical opinion. After all, two weeks in the NICU coupled with a B- in grade 12 "science in society" makes you an expert doesn't it? On the other hand, the doctors and nurses, especially those who have been doing what they do for 30 years, have seen it all and know what generally works and what doesn't.
The doctors brought me in to see the x-ray photo on the computer and took the time to explain the basics to me which is really nice. James chest x-ray looked good. They pull up the x-rays from a few days ago (before his PDA closed) and a few weeks ago (when he had a bad night and was on the nitrus oxide) and you can see the slight changes. You can see how his heart was a little inflamed while he had his PDA and how now it looks better. The lungs look pretty good. The x-ray after his bad night (day 3) were very cloudy, and the last two x-rays have been much better. But while we were looking at the x-ray, the respiratory therapist came in with the results of his blood gasses. This measures, among other things, the level of CO2 in his blood, which is a good indicator of how well his breathing/lungs and the rest of it is working. His CO2 was quite high, so they decided to scrap any plans to extibate him for now. It was unfortuante they said, because if his blood gasses were better, like they were yesterday, based on the positive x-ray, they would have gone for it today. They want the CO2 to be less than a score of 60. Yesterday he was 62, then 57 and today 76. So that has to come down before he can be extibated. They adjust the ventilator settings to help him blow out more CO2. If they were to extibate him now, and his CO2 went to 90, they would have to intibate him again, and the whole idea is to move forward and not backwards. So I'm going to have a little chat with James and tell him to get his CO2 levels down.
In the mean time he's continuing to feed on the breastmilk with direct delivery to his stomach and is doing well with that. He's almost reached 1000 grams (1 KG) which is great.
September 14 - Day 13 - Putting James to the Test
James had a pretty good day today. He spent a lot of time on his tummy. They have upped his feeds to every two hours. He looks like he's getting a little bigger. No major problems.
Right now they are testing James to see if he is ready to graduate off the ventilator. They drop the settings to see how he does when the machine is doing less work. When he is on the C-PAP, he'll be doing all the work. There are a host of factors they look at on his ventilator: breathing rate, oxygen rate, something called 'tidal volume', something called Peeps, yadda yadda yadda. He has good peeps. But he drops his oxygen level every so often (something called "desats"). There is a whole new vocabulary in our day to day.
I'm pretty keen to get him off the ventilator. I can tell he hates it. As much as it helps him, it causes him to have more fluid in his lungs and that messes with his breathing. But he's such a little guy, I wonder if he is going to have the stamina to stay off the ventilator for very long. Taking out the tube only to put it back in again the next day will be really unfortuante. It can also cause internal scarring. This is where things are at right now. Looking to see if he's ready for the next step in the field of breathing. We're told a lot of kids in the NICU go through this back and forth between the ventilator and the CPAP.
Doctors, like anyone else, have different styles. Some tend to push kids. Others are more cautious. So there are some doctors who I think would say move him onto CPAP tomorrow. Others would say, let's give it a few more days. The weekends tend to have a few less bodies around so I won't be surprised if they hold him another day on the ventilator and maybe make the move on Monday. All day to day, wait and see. And when a kid beside you just came in airlifted from William's Lake for major surgery, you're not really the priority. But with James' feedings going up, hopefully that will help him build up his strength.
We ended today with Jo holding him for over two and a half hours... followed by some desats...
James will be two weeks old tomorrow.
September 13 - Day 12 - Nothing Scary this Friday the 13th
Today was a really big day for James. I feel like he has turned a corner. Today he had his echocardiogram (heart ultrasound) and his PDA has closed. Wonderful news! What a relief to be in this position as opposed to having to 'reassess' and possibly face surgery. James also had two poops (#3 and #4 if you are keeping stats at home) which is always a good sign. He's been gaining weight steadily despite being reduced in his feeds while the PDA issue was being resolved. He's back on regular feeds, a few millilitres of breastmilk down a tube to the stomach.
What a good call by the doctor who insisted yesterday that he get the 3rd dose of his medication. That same doctor, a man of few words, today said, what this baby needs to move forward is to get feeding and get off the ventilator. So that's the plan and that's what we are hoping happens in the days ahead.
Moving off the ventilator is a big step and James needs to be ready for it. I can't wait to get him off the ventilator as I can tell he just hates the tube. Switching to the C-PAP (which is a mask attached via a little hat) means that he's got to do the breathing for himself and that is going to be a lot of work for this little guy. The nurses have prepared us that he may have to go back to the ventilator but even if he lasted a few days on C-PAP it would be good for James and his lung development. We would love to see him never have to go back on the ventilator, but we can't get ahead of ourselves. They have reduced the rate that the ventilator is set at to one of the lowest settings (which is a good in terms of graduating to a C-PAP) although they have had to increase his oxygen setting (which isn't good in terms of graduating). While the PDA was open, it caused some respiratory difficulty for James so we'd like to see his breathing get better now that it is closed. One thing that happens with the tube down his trachea (while on a ventilator) is that the body reacts to a foreign object inside it and produces fluid in his lungs. They suction that fluid every so often via a little tube within the tube that's down his trachea (a scary exercise to watch as it often touches a nerve that causes his heart rate to drop very sharply and suddenly).
James seems to like being swaddled. Not as tight as the "GG burrito" that the girls often found themselves in when Grandma Gay rolled into Vancouver, but just a light covering.
So a good day for James. Friday the 13th. It's his Grandpa's birthday. James turned 30 weeks today. Keep it up James.
September 12 - Day 11 - If you want blood, baby you got it...
It was another good day for James. Last night at midnight he was supposed to get his 3rd dose of the medicine that is supposed to close his PDA (patent ductus arteriosus). They held off however because his stomach was bloated, he had thrown up once and he hadn't peed enough. As I mentioned in an earlier post, one of the dangerous side effects of this PDA medicine is kidney or intestinal problems. The big fear is something called necrotizing enterocolitis (NEC) developing which is (according to some random website I found) an infection and inflammation that causes destruction of the bowel or part of the bowel. I don't fully understand it but, it is something you want to avoid big time. So last night there was a lot of risk weighing going on: Do we continue with the medicine that will hopefully close the PDA, but risk other complications? or vice versa? In moments like this I find you really have to trust the doctors and the nurses. They've been through this before - hundreds of times. They thought we should hold off on the 3rd dose until morning and we weren't going to argue with that. I find there is also a lot of arbitrariness in the world of medicine. I'm sure there is some study that says the medicine is 'optimal' if given in 3 doses at 0 hours, 12 hours and 36 hours, but honestly, you think it really makes that much difference it if is given in some variation of that?
This morning at rounds James had had an otherwise very good night so the doctors made the call to give the 3rd dose. But at the same time they also said James needed to get a small blood transfusion. Nothing too unusual and the doctor drew a little chart to explain why, and it made sense at the time, but I can't remember now exactly what the main reason for it was. But my first reaction was to ask if I could be the donor. I have been donating platelets for the last year or so and so my blood has been though all the tests and screening they would need. The platelet donor clinic is next door to the hospital. But it turns out that little James and I have different blood types that were not likely to be compatible. Sorry James, I tried. He has O+ which is the most common blood type in Canada, so he's covered. I want to play him Mark Kozelek's version of AC/DC's, "If you want blood (baby you got it)" which seems very fitting. So James had his transfusion and then his 3rd dose of the PDA medication this afternoon. Let's hope this does the trick. We may not know for a few days. If it is working we should see his pulse score getting better and his respiratory settings improve. If not we could be looking at surgery.
The other major news from today is that James passed his 10 day brain scan (ultrasound) with flying colours. I think it only looks for bleeding on the brain, and possibly crayons that have been lodged up through the nose, but there was neither of those present. So that is reason to be very thankful. James is off his morphine again so I'm going to watch him closely in case he's having a night like the last time they took him off it. I'll be there saying, 'turn it on... among other things...." (that one is for you PM!)
All in all, things are going well for James. It is amazing how much we've learned in the last two weeks, how much we've been through, some of the incredible stories and people we've met here, what a huge range of babies are in the NICU and really a whole other world that I really didn't appreciate until about a month ago. I hope to write about much of this in the blog posts to come. It is very Canadian to be proud of our healthcare system, but this is the first time in my life that I have really appreciated that. Oh and it makes life easier when you live a couple of kilometres away from a hospital like BC Womens and not hundreds or thousands of kms.
September 11 - Day 10 - Eyes on James
James is doing pretty well today. Lots going on. He has received 2 out of 3 doses of the magic medicine (which I’m told is actually just a blood thinner) that will hopefully close the PDA that I talked about in yesterday’s post. He gets the 3rd dose tonight. So far there seems to be some improvement but it is too early to say and we probably won’t see the full picture for a few more days. They have been tinkering with his ventilation settings as he’s had some changes in terms of his respiratory rate (breathing fast at times). He’s been spitting up a bit too and has a bit of a bloated belly. With the potential for kidney and stomach concerns as a result of the PDA medicine they are keeping close watch on how much he pees and his feeding will be reduced (it was otherwise supposed to increase today) and they are decreasing the powerade he gets through the IV slightly, but added a little more sugar to make sure his blood sugar doesn't drop. Today is also supposed to be his 10 day brain ultrasound, but it hasn’t happened yet. The first one was done on day 3 and it looked fine. We’re praying things haven’t changed. They also are wondering if his eye openings are a little small, but I suspect that is just little James looking like his four-eyed Dad who can’t get contacts into his little eyes and has worn glasses since high school as a result. Overall, the docs seem happy with how he’s doing. He looks pretty comfortable. They are going to wean him off the little bit of morphine too so hopefully we don’t have a repeat of the last attempt.
September 10 - Day 9 - On our Toes
About an hour after I wrote yesterday’s post, James started to show a few worrisome signs and for the rest of the day we were on edge. He needed to get a higher level of oxygen (above 21) as it was dropping sporadically and his respiratory rate was rising sporadically. He looked a little pale too.
The docs think it is his PDA that is behind the change in behaviour. What is a PDA you ask? I previously knew it as public display of affection (those people making out on the subway) but now it means patent ductus arteriosus. It's a tube in the heart that usually closes on its own in term babies soon after they are born. In premature babies it doesn’t often close by itself. When the baby is in the belly the lungs are full of amniotic fluid so the blood bypasses them via this tube. After birth, it then needs to close. That’s what I understand anyway. You can google it for more info.
So there is some magic medicine that helps it to close. They started James on that at noon today. They had to get blood results and a bunch of other stuff before starting him on it. It may take a few days to close and the medicine may or may not work. I’ve heard success rates from 50% – 70% which is encouraging. They also need to monitor his kidneys closely because it has side effects of not being able to pee. This means not increasing his feeds. It’s all very intricate and delicate.
If the medicine doesn’t work, they will reassess the situation. I gather they could try another dose or perform surgery to close it. In an earlier post, I mentioned one day the NICU was closed because a baby was having heart surgery, it turns out that was closing the PDA. When you hear “heart surgery” you immediately freak out, but I’m told this surgery is fairly routine and fairly non invasive. We’re not there yet so I’m not going to worry about it for now.
Always on your toes in the NICU. James is doing OK otherwise. He is gaining weight slowly but steadily.
September 9 - Day 8 - Settling In...
Little James had a good night and is doing well. He is one chilled out dude on the morphine and it has made a big difference. It is a balance because if he is too chilled out then he's not working as hard to breathe which he needs to do to exercise his lungs. So they are going to cut him back to the most minimal amount of morphine possible. They are also going to give him a
little bit of caffeine. Not a bad way to start the week. Just wait until he discovers beer! The other good news is that he had his first poop, and with that, still maintained his bodyweight. His bilirubin is also back where it should be so he is off the sun tanning lights. Keep up the good work James!
The last two night Joanne has been able to hold him for about 2 hours (from 9 - 11pm) which is just so wonderful. We're sort of seeing how the day to day is likely to unfold over the next few months. Joanne and Grammy head up to the hospital in the morning so they can be there for rounds. I take the girls to school in the chariot and head up for a quick visit and then head to
work. Joanne is pumping every couple of hours and is able to nap in the afternoon and we go up in the evening together. We've had world class cooking care of Grammy (potato leek soup the way Darina Allen does it), Rebar Pasta, etc...
Thanks everyone for keeping James in your thoughts and prayers. When James is doing well, then so are we.
September 8 - Day 7 - Joy and Pain
Today has been a hard day. We had 2 hours of wonderful bliss last night from 9-11 pm when Joanne got to hold James for the first time and cuddle him. That was magic. Unfortunately, it was followed by 12 hours of James being really sad. He clearly hates having a tube stuffed down his trachea. He's shown some good fight trying to pull it out. I suppose that feistyness is a good sign, it is just so hard to stand by him so helplessly (never mind going home) knowing he is in that state. He has basically been bawling since 11 last night but the cries don't make a sound because of the tube down his throat. We left the hospital around 12:30 last night after it was decided he was going to get a little bit of morphine again to try to help him. Joanne called at 4AM and the nurse said he was doing better. We we arrived early today though he seemed to be in the same state he was late last night. We have to remind ourselves that many babies (premature or not) have nights like that.
Since our first day here we were told to watch the baby and not the monitors and numbers. That's been hard today because James' numbers all look quite good (which we need to be thankful for) but he is clearly upset and agitated. It is very stressful. People have also told me that adults who are on ventilators are almost always sedated because it is so hard. I've been puzzled as to why they would expect a kid less than 2 pounds to be able to handle the tube without some pain medication, but we have to trust the doctors. Apparently, some kids can handle a ventilator without morphine. James doesn't seem to be one of them and that's OK. One of the respiratory therapists reminded us that the amount of morphine he's getting is so tiny.
It was also frustrating that James (possibly because his stats look good) was the last one to be visited today during the rounds. They started on the other side of the room around 8:30 am and James didn't get his turn until after noon. No doubt many of those babies had more pressing issues than James. It was decided to put him back on a little bit of morphine to help him (and that seems to be working, just wish that decision could have been made 12 hours ago) and he is also back under the blue lights because his bilirubin is high again.
I want to end today on a positive note so I'll mention that his 'blood gasses' look good, he's consistently breathing normal air (21% oxygen) so hasn't needed any boost (that's really good), his heart rate and all the rest of it looks good and he's tipping the scales at over 800 grams (in the spirit of positivity, let's ignore the fact that he's sporting about 200 grams in tubes!). Those are all good signs. We love you James, you hang in there. It's going to get better.
September 7 – Day 6 – Home for Mommy but not for James... yet
James is doing very well. He wet his bed today so needed a full change. He was switched off of the "shaker" ventilator and onto a more normal ventilator setting. He's doing really well with the change. His level of CO2 and O2 in the blood are looking good. Blood sugars are also good. They test his blood every few hours and because his veins were too small to place a line to get samples, they have to keep pricking his poor heel. There are so many little dots but he's taking it like a tough guy. He has also been on a very tiny dose of morphine for the past several days and he's off that now as well. Yesterday's chest x-ray looked much better. His bilirubin was borderline but they decided to save him from the blue lights hoping he'll sort himself out. He's been very stable for the last 2 days and that is wonderful.
Today was an emotional day as Joanne was discharged from the hospital. Those who know Joanne or her sisters will know that they can turn on the waterworks on almost any occasion (especially when looking at photos or when they do long division and have a remainder) but to walk through the same doors today where we brought Claire and Audrey out in the carseats is obviously very hard.
I've come to accept that the isolette is supposed to be a lot like being in the tummy. It's warm, dark (when covered) and it's where he eats and grows. Instead of doing the last two via the umbilical cord he's doing that through tubes and IV's. The risk of infection and problems is obviously greater however outside of the tummy.
Being home from the hospital means we can't just pop downstairs whenever we want to visit James. We can visit 23 hours a day and can call for updates but the next few months are going to be spent going back and forth to the hospital every free chance we get. That will probably mean that Joanne will spend the morning there and Daddy will go up in the evenings. Joanne can't drive after having surgery for a little while (we've heard mixed info on how long) so Grammy is going to chauffer. Audrey is not through her gradual entry at daycare and Claire has another week of just going in the mornings, after which she'll be in school until 3.
We've had an outpouring of emails, gifts, food, helpful playdates for the girls, prayers, etc... and it has all been so appreciated. We are doing as good as we could hope in this situation and really, so much depends on how James is doing. When he's OK, we're OK. When he's not, we're not. It is a lifesaver to have Grammy here, which means we don't have to worry about meals or cooking or someone to watch the girls when we go to the hospital. Our freezer is packed to the gills and we're going to need to find room for the breastmilk, which is flowing like the salmon of Capistrano. When Grammy goes back to Toronto (probably around Sept 17/18) the most helpful thing for us would be if people are able to hang out with our (wonderful, easy going!) girls, especially in the evening so we can spend time up at the hospital. That is the most helpful thing and the greatest need for us. We're in great shape at the moment while Grammy is here. Most of all, we just want James to grow and to be OK so anyone able to help with that, we'll take that too please.
Joanne still hasn't had a chance to hold James and we're hoping that might be possible later today or tomorrow. It is pretty complicated to move him out of the isolette with all the tubes and everything. We don't want to rush it and we'll need the respiratory support people on hand. Joanne also has to be ready to sit for several hours. The NICU staff are very encouraging about having skin to skin contact as they must see the benefits to the baby.
September 6 – Day 5 – Don’t let up
Yesterday and last night were James’ best performance so far. He’s doing pretty well on a lot of fronts. Way to go James. Joanne attended rounds today and the plan is to graduate James off the “shaker” ventilator and change the mode for him to go on a regular ventilator. We’re a bit nervous about the quick graduation as it is so reassuring to know he’s doing well and it would be nice if he could get a little more time in what appears to be a comfortable state… especially if things go sideways. Thankfully it doesn't involve changing tubes or anything just changing the mode on the machine.
The NICU was closed off shortly after rounds as another baby was having heart surgery. That is a very real reminder that as much as the last 24 hours have been quite positive, we can’t get too comfortable because things could change in an instant. The heart surgery that the other baby is having is to close part of the heart that is supposed to close naturally and that is something that James could find himself facing. We’re hanging in there by a thread.
Joanne is likely to be discharged tomorrow. Her milk has come in and she is pumping on the double pump like crazy. The milk is being stored in the freezer as James is taking only drops at this point. I’m going to pickup a double pump this weekend.
James would have been 29 weeks today and although it has been a rocky first 5 days, I feel like the positive points have outweighed the negative ones.
September 5, 2013 - Day 4
Today was a good day. We needed this big time. James is doing much better. He seems content. He's off the blue lights, he's off most of his more invasive medications and he's starting to get small drops of breastmilk sent down a tube into his tummy. He had a really big pee. The fluid behind his lungs seems to be going down. He's pretty stable.
Joanne and Grammy attended the "rounds" in the morning and his lungs were looking better on a chest x-ray compared to the day before. James had a new PICC line put into him in order to send IV fluid into him and that went well. THere were two unsuccessful attempts to set another line in him in order to draw blood samples. His veins are too small. Unfortunately that means his poor little ankles will continue to get pricked for samples. But with his healthier levels all around hopefully there is less need to take samples as frequently.
It was otherwise another busy day dealing with pickups and drop offs with Claire and Audrey's gradual entry into kindergarten and preschool/daycare. The van also made a pit stop at Clarkdale Volkswagon. Claire made us both laugh after Joanne mentioned that she was supposed to be scheduled to work nights tonight and that she won't be going in, Claire said, "why? because of your leg?" (She remembered Joanne getting a shot 2 days earlier). It is amazing how though all the tears and emotions there have been a lot of good laughs.
It looks like Joanne will be discharged from the hospital on Saturday which is going to be a pretty major change. It is a luxury to be able to pop down to see James at any time of the day. While we can still do that after being discharged, it will be different making trips to the hospital everyday.
Keep it up little James.
September 4, 2013 - Day 3
Today was another rollercoaster ride. James was scheduled to have his ultrasound on his brain and stomach. The brain ultrasounds is to see if there has been any bleeding on the brain. The trauma of delivery and the very delicate veins in a premature baby can result in bleeding. Bleeding is "not good" and can have unknown future consequences. There were a few hail mary's said this morning. After dropping off the kids at school and daycare, I arrived just in time for rounds, which was happenening at the same time as the ultrasound. All I was thinking about was whether the results showed any bleeding on the brain. I felt it was one of those moments that was about to change my life forever. The prayers were answered though and James brain looked good. There was some discussion about the kidneys, liver, etc... but things seemed to be OK. But the ultrasound, which wasn't supposed to be about the lungs, showed some fluid behind the lungs which puzzled the doctors. They went back to the day 1 chest xrays to see if the fluid was there then, or whether this was a new development.
The doctors and nurses in the NICU are absolutely amazing. They are very smart, very caring and issues like these are challenging and puzzling to figure out. I kept thinking to myself, geez, I'll take some fluid behind the lungs any day of the week over brain damage, but I don't really understand everything. Maybe it is more serious then I know.
The doctors took the time to show me some of the xrays. One of them is pictured over on the side. See that smudge that looks like my fingerprint? No that's whiplash! (that's a quote for the Simpson's fans out there).
So it's one thing after the other. As the day wore on things were again deteriorating. James was not doing well. He's been overhandled (which seems to be an unfortunate reality) with lines and picks and IVs and pricks and turns and tubes and it's not easy for a 1 pound little dude to handle. He was also jaundice and under the blue lights to get his bilirubin to the right levels. This meant little eye patches on and for the past two nights (both time when the Harders were there) he opened his eyes and looked at us. Today wasn't really going James' way and he was starting to look sick and low energy. When he first came out he had some feistyness to him - kicking his feet and all. Now he just seemed like an overmedicated little dude. There were a lot of tears going to bed. It was nice to have Nikki around for some support. Through all of this, there was a positive brain scan that we have to be so thankful for. We have to keep the hope that James is going to make it through the NICU and turn out fine like so many other little kids that we know.
September 3, 2013 - Day 2
Today started out OK but as the day wore on things began to deteriorate. On top of everything it was Claire's first day of school and it was devastating for Joanne to miss that. Every morning the team of doctors, respiratory therapists, nurses, etc... meet and discuss the plan for the day for each kid in the NICU. It's called "rounds" and it happens at 8:30am and can go til noon some days. They came to James first since he was the new guy in town. They often start with anyone new or those with the most concern/issues. I was lucky to have made it up in time for rounds.
Things didn't seem too bad in the morning but it turned out to be a rollercoaster day. We had a rough night and a bit of a setback but he's seemed to make it past some of this. We knew the NICU would be a rollercoaster and that's exactly what it is. You don't really understand what that means until it is happening.
Where to start.... around noon one of the most heartbreaking moments you could ever imagine as a parent happened when big sister Claire met James for the first time. She did very well and was interested in everything that was happening to him. But after a while we had to go back upstairs and with her heart of gold, she couldn't stand to leave the NICU where her baby brother was. She just wanted to be with him and to help him. Claire brought us all to tears.
At about 9PM James was holding our hand and opened his eyes to look up at us. He loves to hold our hand. He also got to meet TG. But as the night went on, the doctors weren't happy with the 'leak' on his ventilator. Essentially, the tube put down his trachea was too small, so it didn't have a perfect fit and meant the ventilator was not working properly. I think part of the problem was that James' head is more like a typical 28 week baby, but the rest of his body is smaller. So it was anyone's guess how big his trachea was. So around 1:30am they switched him off his ventilator (which was breathing for him) and onto a C-PAP machine (with a mask, he's breathing with some help, which is better and which he was on during his first few hours). He was doing OK on the C-PAP. His oxygen level was in the low 80s (they want it above 86) and his respiratory rate was in the 80s (they want it below 60) so it was just not good enough to be sustainable to keep him on the CPAP. So he had to get back on a ventilator. They were going to redo it and use a different size tube. All that switching is a big deal and it is hard standing there helpless watching it all go down at 1am. I went upstairs to try to get some sleep and at 4AM one of the doctors was in our room and woke us up to let us know about some more serious problems he was having during the past few hours. It was bad. Real bad. I don't fully understand the extent of what happened but he had to get some Nitrus Oxide which I gather is a pretty serious chemical (apparently Pops has done research on this stuff) and it turned him around. They switched him again to a different kind of ventilator. One that vibrates constantly and one I call the "shaker". Basically, he looks like homer simpson on the vibrating chair in one of the early episodes.
So much of what is going on right now is trying to stabalize him so that his heart rate, breathing rate, oxygen levels etc... are where they should be. It's not easy and I suppose it's a lot like regular babies in that once you think you've figured things out, they switch it up on you. In a perfect world, the first thing they put him on would work 100% perfect but that's just not the way things go. The NICU is a place where if you are sort of being ignored, that's the best thing you can hope for. You don't really want to be the baby with the team of people surrounding the isolette. Unfortunately, that was James last night.
September 2, 2013 - Day 1
Little James did pretty well at the start. He was feisty had some kick and they started him on a C-PAP machine to help him breathe. As we would later learn this kind of machine only works with more mature lungs as you have to breathe and the machine just helps give you a boost and a little more oxygen. It was a lot for James to take. His whole little body was compressing as he took his first breaths. He was so small it looked like it was taking every ounce of strength he had to breathe. About an hour later they switched him to a ventilator. The meant putting a tube down his trachea and the ventilator does the breathing for James. A lot of little premature babies need ventilators until their lungs have had more time to mature and develop.
The first few hours are pretty scary and emotional. I felt so helpless and I left and came back to the NICU about 15 times in the first few hours. That's a lot of hand washing. When I was in the NICU I felt pretty useless as the medical professionals needed to do their thing and I stood by in the back watching and choking back the tears. I thought I'd be better off being with Joanne in post-surgery recovery. But then five minutes after leaving the NICU I felt like I had to be back with little James.
There was a huge learning curve for me in the NICU. Joanne understands a lot of what is going on having worked on both a respiratory unit and cardiac unit. From what I have figured out, the grand plan of the first few days is just to try to get James to be "stable". They want his heart rate, respiratory rate, oxygen level, blood sugar, etc... to be a good healthy levels. When they are not at good levels, they wonder why and try to adjust or do something else to fix it.
The first day and night was really hard on James as they "tweaked" everything. It was a night I'll never forget.
Sweet Baby James by James Taylor
Uncle Ewan sent us this song and it has become James' anthem. Joanne listens to it while she pumps and it has helped her milk to come in. Warning: it may do the same to you!
September 1, 2013 - Day 0 - James' Birthday
Today was a day we will never forget. Joanne wasn't feeling well and had a hunch she should go to the hospital. The perinatologist did an ultrasound and the moment we had been dreading had come - there was reverse flow in the umbilical cord. James was 28 weeks and 2 days and it was time to come out. We were lucky to have made it to September, even if just only barely. It was a very emotional and scary moment. It was our 6 year wedding anniversary.
Thankfully our good friends Kate and Dan were available and were able to watch the girls for the day. While Joanne was on monitoring I raced the girls over to the Chalmsy’s house in Strathcona.
The baby needed to come by way of a cesarian section as a normal delivery would have put too much stress on the little guy. Claire and Audrey were born the old fashioned way so the experience of a cesarian section was new for us. James was born at 5:04PM. He let out a little cry when he was born which was a good sign. I peeked over the curtain to see him when he first came out. Joanne got to see him very quickly and they took him to an isolette table where a team of about 6 or 7 doctors and nurses were around him. They put a mask over him to help him breathe. After about 5 minutes they wheeled the isloette down the hall to the NICU while the doctors were stitching up Joanne. There wasn't any panic. One of the doctors was the same one who delivered Audrey and was with us for the 12 hours immediately prior to Claire being born.
August 2013 - The race against time
As it became more and more clear that we likely had an IUGR baby, we were followed closely by a wonderful team of perinatologists. These are specialist doctors and that work with high risk pregnancies.
We all want the baby to make it to term – past 37 weeks of pregnancy. The longer the baby stays inside of mummy’s tummy the better. Things like the lungs don’t fully develop until much later on in the pregnancy. But with a failing placenta, we knew the baby was not going to make it to term. The question was how long would he make it?
Ultrasounds can show the amount of blood flowing between the placenta and the baby, via the umbilical cord. By late August, Joanne was having these ultrasounds every few days and then every day during the last week. They were closely monitoring that flow. If there was flow, then we were fine. Even if the flow stopped we were ok temporarily. But once the flow reversed then the baby would be getting back the blood that contained waste and low oxygen and that could cause brain damage and eventually the baby’s death (resulting in a miscarriage or stillborn baby). It was a very stressful time. Joanne was admitted to the hospital during the last week of August. She needed to take it easy – not exactly bed rest – but something close to it – so that every ounce of energy would hopefully be used for the baby. But there was nothing we could do to really change the situation. They can’t operate on the placenta or somehow intervene medically. These were the cards that little James was dealt.
There were times when the situation looked very bleak. We started to learn about babies born at 24 weeks or 26 weeks or 28 weeks, etc… Some of the literature about babies born this young talk about the baby’s chance of survival and chance of having long term disabilities. The further you get the greater the chance of survival and the smaller the chance of disabilities. It seemed like 26 weeks was a big milestone. 28 weeks was another milestone. And then 32 weeks is another. One article made me think of salsa as it described those born between 32 and 37 weeks as “mild” premature babies, those between 28 and 32 weeks as “medium” and those born before 28 weeks as “extreme”. We also learned that unless the baby weighed 500 grams or more, they wouldn’t really put the baby through the trauma of the NICU. It was very scary in early August when we were at 24 weeks, then at 26 weeks, etc… The growth scan at 28 weeks had us feeling good James had grown since the 26 week scan by about 200 grams and was estimated to be roughly 720 grams.
We are very grateful to the wonderful team of perinatologists at BC Women’s hospital. They are a very dedicated, very smart group of specialists. Because of the close monitoring, they knew the exact point at which to make the call to get James out. Without this close monitoring and the decision to deliver at the right time, James would never have had a chance.
We are also grateful for wonderful Aunt Miriam, mother of 3 kids under 6, who flew out to Vancouver to help us out during that last week of August. The timing of all of this was crazy.
Why James was born early
Joanne had a problem with her placenta. James wasn’t growing as he should have been. There is no real rhyme or reason as to why or how it happened. It’s not genetic or due to nutrition or anything like that. Claire was overdue when she was born (41 weeks) and Audrey was born at 37 weeks. A pamphlet we have says it happens in less than 10% of pregnancies. More often the placenta starts to fail later in the pregnancy. We were in a more difficult situation where the placenta was starting to fail earlier on in the pregnancy.
The technical name for what James had is called Interuterine Growth Restriction or “IUGR”. The staff in the NICU sometimes refer to him as “an IUGR baby”. The good thing is that James developed normally – all his fingers and toes are there, it’s all just small. As some of the doctor’s put it, ‘we’re not all born to be basketball players’.
James is a real miracle as the placenta he was living off was in rough shape. It weighed only about 100 grams and they usually weigh about 600. His umbilical cord was very thin. What is most amazing about this is that somehow he managed to develop and most of the nutrients he was able to get made it to his brain first.
The first time we became aware that there was a problem came when Joanne’s blood test results came back with some of the levels out of whack. Back in June, when Joanne was about 4 months pregnant we received a scary report that based on the blood work, that they considered the baby had a greater than 1 in 2 chance of having down syndrome. That turned out to be false, he did not have down syndrome, but something was not as it should be. Then the 18 week ultrasound showed James’ growth markers (like waist circumference and femur length) to be in the less than 10th percentile for his gestational age.