Baby Colette: Three Months Old

As I look back at last month's post, it's incredible to see where we are now. Colette still has a long road ahead of her but she's making huge leaps that, honestly, I don't think the doctors thought she was capable of. A month ago, she had started improving after the July 7 biopsy. Today, should could pass for a 'normal' baby. The past three weeks especially have been huge. She's been able to wean off of the non-invasive cpap (that was connected to the ventilator). They tried to wean her to regular bubble cpap on July 20, and unfortunately, she only made it a few hours. It was disappointing. In the meantime, she was weaned off various medications and was dealing with withdrawals. She built up to full feeds and then they began contracting her continuous feeds down -- first to 2 hours, then to 1.5 hours, then to an hour. She had some spit up with that, so they increased up to 75 minutes before getting back down to an hour.

Two weeks ago today, she was again weaned down to bubble cpap, switching between two mask sizes to protect her skin. She made it an hour or so before she started retracting and I started getting really nervous. Where would this leave us if she still couldn't go on cpap? I think it was tough because all the respiratory therapists, nurses, and I were all pretty confident that she would do well. For the past week, she had been getting a 15-20 minute break from all support while she got a sponge bath, changed linens, etc. And she was not retracting and her numbers looked great. This was so exciting so when I saw she was retracting, it was disappointing to say the least. I chatted with the doctor, they considered doing a chest x-ray, and ultimately decided to bump her up to a pip of 8 (usually they don't use 8 or 9 which are considered pretty high on bubble cpap, they would instead do the non-invasive ventilator cpap). I was on edge all day expecting to hear that they had had to put her back on the non-invasive, but when I came back that afternoon she was still on bubble cpap. When I left, I glanced at the machine and noticed that she was back on a pip of 7, where she had started that day. It appeared her body just needed some time to adjust to working harder, but she was looking great and not working hard to breath. What an enormous relief! Though I wasn't sure how long it would last... Regardless, I was so glad the doctors gave her a chance and didn't put her right back on the non-invasive. That would've been another set back and I was thrilled she was tolerating the new lower support.

Over the past two weeks, she's continued to wean on the cpap. The first week they didn't make any changes. It was already a big jump coming off the non-invasive. This past week has been so much faster and I can't believe she's tolerated all the changes. They've switched between different masks, then when she outgrew one of the masks and they didn't have another one to switch into, they started putting her on a less cumbersome cannula (which provides less pressure) and switching that with the mask. Last week they also let her nipple on a bottle for the very first time, and for this, they switched to her a nasal cannula (just for feeding) which offers even less pressure. She tolerated all of it with perfect sats and on room air at 21%. Two days ago, she was switched to the cannula full-time and still looked great; yesterday they lowered her pressure support down to 5 (after slowly weaning down from 7 a week ago) and let her come off all support for her two bottle feeds. Today she came off all respiratory support completely. I truly can't believe it. When we got the cat scan results, we were given a range of outcomes... from bad to very bad. When I asked if there was a possibility that we'd take her home somewhat normally, you know, strapping her in a carseat and saying goodbye, the answer was no. We were told that the prognosis is generally grim, and if it's not, we're looking at longterm oxygen support. What we're looking at today is nothing short of a miracle. Thank you for all the prayers!

I'm well aware that even if she's able to be off all respiratory support right now, that doesn't necessarily mean we're in the clear, but it's certainly promising. Unfortunately with her condition being so rare, they really can't tell us what will happen, but they've made it clear that they wouldn't be surprised to see her readmitted to the PICU at some point (or multiple times) in the future. I think there's always the possibility of her needing additional support at night, or when she's sick, but all of that would be nothing in comparison to what we were expecting in the best case scenario.

Over the past 2 weeks, she's also weaned completely off of the methadone and is showing no withdrawal signs (a doctor had previously told me that if she went home, she'd go home on it as it's such a long weaning process). She was also getting ativan for anxiety as needed and she's been completely off of that for at least two weeks. Thursday was a big day as she got her Broviac catheter removed. This was a line that was placed during the lung biopsy to have easier access to drawing blood, labs and giving medication. It's like a more permanent IV. It's always a toss up to take it out or not -- you want to keep it in if you think you'll need it as she then doesn't have to get pricked multiple times, but there's obviously a risk of infection as well. They drew some final labs from it earlier in the week and when all the numbers looked good, they decided they could remove it. She did great.

If you remember the photo from Colette's 2-month blog post with all the different medications, it was a bit ridiculous. Today, Colette has one machine, a feeding machine. Just yesterday they consolidated her feeds to 30 minutes and while she didn't spit up, she seemed irritable after feeds so they're bumping it up to 45 minutes. She is on phenobarbital once a day to help with her cholestasis, which was caused by being on IV nutrition so far which is really hard on the liver. Getting on milk feeds has helped this as well. The good news is that cholestasis is reversible, the bad news is that it takes a long time. Three weeks ago her number was 13 and we're looking for it to be less than one. Two weeks ago it had a huge drop to 10, the doctor was thrilled but said not to expect that again, that it would be a very slow process. Well, last week it dropped to 6. We were thrilled!

So to sum up where we're at now... Colette is currently completely off of all respiratory support. She has a feeding tube in her nose and is getting her feeds over 45 minutes. She attempts a bottle twice a day and takes anywhere from 5ml-35ml. The only medicine she's on is phenobarbital, though she does get some vitamins given through her milk. So where does this leave us? I don't want to jump the gun, but I will be optimistic and assume that she'll be able to stay off respiratory support. Which means her big hurdle is taking her feedings by mouth instead of through a tube. If she's not able to, there are options for us to be able to take her home and manage tube feedings, but the goal is definitely for her to take at least the majority of her feeds by mouth.

Recap of progress day by day:
July 19 - more weaning on the pain meds
July 20 - tried to wean onto bubble cpap but couldn't handle it
July 21 - lung biopsy confirmed pulmonary lymphangectacia
July 23 - you snapped your pic line, so they removed it and did not replace it since they were almost done with it anyway
July 24 - cholestastis seemed more evident (yellow eyes, slightly swollen liver)
July 25 - up to full feeds; no longer has a personal nurse/share with one other baby
July 26 - Octreotide is fully weaned
July 28 - you managed to get your chest tube out; it hadn't been putting out anything so they kept it out
Aug 1 - started contracting the feeds
Aug 2 - working on weaning the methadone
Aug 3 - first real tummy time
Aug 4 - weaned onto bubble cpap
Aug 6 - last ativan for anxiety
Aug 7 - breast fed on  your own, finding the nipple and latching
Aug 8 - first bottle; passed her hearing test
Aug 12 - continue to wean on the respiratory support
Aug 15 - passed her physical therapy assessment, she just has a flat heat
Aug 18 - Broviac taken out, first tub bath, doing great on the feeds, new record of 38ml
Aug 19 - last dose of methadone
Aug 20 - weaned completely off respiratory support (!!!)

I'm feeling optimistic about bottle feeds. It's pretty crazy for a baby to not attempt 'nippling' for the first three months of their life. She's obviously had a rough start and being intubated for about a month in total would certainly justify an oral aversion. But we're so grateful that she's showing no signs of that. She takes a paci well (though there are definitely times she doesn't want it and has spit up after someone has pushed it too much on her). She's even latched on my breast briefly (though I'm only allowed to attempt this right after I've emptying my breast by pumping as she can't have my breast milk). We've been introducing the bottle for the last week and though it's certainly slow going, there are lots of good signs. First, she's starting to wake up before her feeds so she's feeling hungry (hard to do when you're on continuous feeds like she was before). She's also giving cues that she's hungry: getting fussy, but also lots of rooting, etc. The first 4 or 5 days of working with the bottle made me a bit nervous because we had to go so slow, I had to manage her and not let her suck too much because she's never had to do the suck-swallow thing and was very uncoordinated which meant that she sometimes coughed or gagged. Our main goal was to avoid her having an aversion to the bottle, so we wanted to take it slow, let her get comfortable with the feeling of sucking and having something come out and go down her throat. The good news is, she's done great with that. Despite a cough here or there, she often rooted for the nipple immediately. The speech therapists worked closely with me on technique. Over her first full week of bottle feeds, she was taking about 4-5ml... out of a 92ml feed. Whatever she didn't take, she got through her feeding tube. She had one great day last week of 10ml, but I could tell it was going to be a slow road and it was unclear about whether or not she'd be able to successfully bottle feed versus keeping a tube in. Well, several days ago was the best day ever. She took 26ml at her 1pm feed! I couldn't believe it. It seemed like everything clicked. She got in a rhythm, had no coughing or gagging, took breaks when she needed too and kept drinking. I was so proud and sharing the news with all the nurses. Of course, you wonder if it's a fluke. Well, the doctor changed her order after the success and said she could be offered a bottle twice a day. So after her first tub bath last night (Yay! With her Broviac finally out, she's line-free and could sit in the tub!), I offered her a second bottle of day. I couldn't believe it when she repeated the smoothness of the 1pm feed, and ended up taking 38ml. I honestly don't think I've ever been prouder of anything in my life. Even though it was almost midnight by the time I got to bed, I was too excited to sleep. I saw that she can really do this and am confident she'll figure it out. Of course, yesterday she never got into a rhythm at the 1pm feed and only took 9ml. Last night and today, thankfully, were more successful, ranging from 20-31ml. Regardless, I think it is a huge confidence boost to see that she's physically capable of taking that amount comfortably and that with time, she'll slowly be able to build up and hopefully take full feeds by bottle.

Everyone I've talked to has warned me that this can be the tough part... feeding can take soooo long and often it's the last thing keeping them in the NICU. We've come so far that feeding seems like a blip on the radar. But it's funny how when things were bad, I said I could wait as long as necessarily as long as she was relatively healthy. Now that she's made such huge progress and is where she is, I'm greedy and just want things to speed up so she can come home. She's in such a great place that I just need to be patient and be prepared for two steps forward, one step back and hope we get there in the end.

One other aspect of feeding that we've been working on is introducing breast milk. With her condition, processing the fats in breastmilk is difficult for her body and causes the fluid accumulation. I'm still pumping, I guess just because it breaks up my day at the hospital and makes me feel a bit more normal to be able to chat with the other moms in the pump room. I was starting to give up hope on her having my milk but then started researching more on skimming the fat out of my milk. I read about this early on but when I asked the doctor, he said they didn't do it there so that was sort of the end of the conversation. I've connected with several other parents who have done it in our same situation and some of the top children's hospitals in the country are processing in-house. I brought this up with my doctor 3 weeks ago and luckily she was open to researching it, speaking to a dietitian at one of these hospitals, as well several others. It's been slow progress on seeing what could be done and at this point, I'm not really sure what chance I have of using it. I do want to see all the research before we make that decision. There's always a risk of fluid reaccumulation and having seen her come so far, I know both Dave and I are on the same page that we don't want to jeopardize her current status, but there are huge benefits even to skimmed breast milk and since Colette's immune system is already weak, I'd love for her to get a boost this way. We're meeting with the doctors at the end of next week when they will present several plans to us with different options. Fats will slowly have to be introduced into Colette's system eventually, so we're looking at when that would be and if it makes sense for that to come from breastmilk.

On a different topic, there has been some discussion of moving her up to the PICU. I'm not into this idea at all. Yes, you get your own room up there which means you can be with your baby 24/7, sleep there, etc. I think you're also expected to be there much more than in the NICU. As babies get older, the NICU is more limited in what stimulation developmentally can be offered. With that said, I know everyone in the NICU and dream of how great it will feel to one day leave there with everyone celebrating with us. It will be so anti-climatic if we're moved up to the PICU for our last week or two and go home from there. It may come down to a space issue and if they start getting a lot of babies in all at once, she would be the first to be moved upstairs, which I totally understand. But if we're looking at our stay being within the weeks range instead of months, I really hope we can finish up where everyone knows her. The neonatologists have also made the argument that they want the doctors and nurses upstairs to get to know her since it's likely she'll be readmitted at some point. That makes sense too, and they have been sending down some of their nurses to work with Colette so they're familiar. We'll see if we're able to keep her where she is. Thankfully, developmentally, Colette is on track. She's had an assessment with physical therapy and everything looks good, tone, response, etc., which is great considering how much time she's spent in bed. The only thing we're working on is her flat head (again, what do you expect with all that time in bed!) but the doctor is confident that her head is still soft and should hopefully round out on its own (not that it matters in the scheme of things anyway!).

That pretty much sums up Colette's month. It's crazy how much she's grown and she seems like a completely different baby than she was 6 weeks ago. She's looks so big next to all the preemies. Literally she's in a room with babies who are like 2lbs and she's 12lbs.

You know you’re been in the NICU too long when...
  • They have to order diapers from the Pediatric unit 
  • You’ve outgrown the cpap (XL mask is quickly getting too small) 
  • You’re passing clothes you’ve outgrown to other babies in the NICU 
  • Everyone keeps talking up how great the PICU is 
  • They have to special order feeding bags as you’ve outgrown the oversized syringe they feed most babies with 
  • I haven’t worn my wedding ring in months (not allowed in NICU) 
  • All the beeping monitors have become white noise to me
  • The smell of the NICU is oddly comforting
  • My hands are so dry from the obsessive hand-washing
  • We're working our way through the second rotation with each of the 5 doctors (2 weeks each) 
  • I've met every nurse in the NICU 
  • I set up my own chair, put away my own pumped milk, etc 
  • You’re starting to coo 
  • Your cry is no longer the cat-like cry of a newborn 
  • Everybody knows you 
  • You smile on command 
  • You’re getting your vaccines in the hospital 
  • You’re too big for newborn clothes and are quickly outgrowing 0-3. You'll definitely go home in at least 3-6 month clothes
  • The nurses start relying on me more and more, letting me turn off the monitor alarms, etc.
  • My call log looks like this:

Colette is very special in the NICU. I've spent a lot of time talking with nurses and they're pretty candid about the fact that they just can't get emotionally attached to the babies. Two I was talking to admitted to crying in the shower, but they both agreed that you always need to be strong while working. With that said, it's impossible to not get attached to your primary baby. We have 6 different primary nurses (most people just have one but I pushed for more and then it seems like people wanted to take her on as a primary too). Basically a primary is someone who cares for your baby every time they're working. For some shifts, I have 2 primaries, well, I guess one primary and one secondary, so if both are working the primary gets Colette. It's on these days that I usually get the secondary coming over to give the primary a hard time about getting 'her baby', in a joking way of course. Though there have been times when my primary hasn't gotten her because they've had someone with her who had a 12-hour shift or something and my primary gets annoyed and says she's going to go talk to the charge nurse... they become pretty possessive (in a good way:). What's special about Colette is that she seems to have stolen the hearts of just about everyone in there, even beyond her primary nurses. I think this is partly because a. she's been in the NICU for so long and b. she's an older baby, which they're not used to, and therefore more alert, responsive and even smiles sometimes. This will steal anyone's heart! But even beyond that, I have respiratory therapists, or random nurses who I don't ever remember having her who are always popping by to see how she's doing. I've been told on numerous occasions by different nurses who I don't know very well how much they love her. Last night she had a nurse from the PICU for the first time and when I got in this morning (she had worked all night), she told me how Colette is clearly a 'fan favorite' that various nurses and RTs stopped by throughout the night to check on her. I absolutely love to hear this! I have nurses telling me how 'inspirational' she is. There's really no better feeling than knowing what an impact she's had on so many people in her short life so far, especially considering they're sort of suppose to keep the emotion out of it. It's also nice to know she's in such great hands when I'm not there.

Colette, my sweet, strong, brave, happy, inspiring, amazing little girl. I know Dad is not a fan of the word amazing, but honestly, you continue to amaze us and everyone around you every day. I feel like I've experienced a different level of love when you arrived. Not that I love you more than your brothers, but your struggles have pushed me to a different level of being a mom. You've taught me to do things I haven't had to do before, you've forced me to become more patient than I ever thought possible. In this moment, you're my top priority, you're who I want to be with, I would do absolutely anything to take away all this pain you've had to go through. I think a lot of becoming a parent is being ready to give yourself to someone else and be selfless. I'm not saying that as a mother I shouldn't stay involved in things that are fulfilling for me, but even with your brothers, balance was key and honestly, I was still a bit selfish. When things looked bad, and the best case scenario was you coming home on oxygen, I really do feel like things changed. As Dad and I discussed what our life would be like, I was sad for you, and I was sad for how your brothers' lives would change, but I was not sad for me. I somehow was able to take the focus off of myself. When you were first born, there was still a lot of focus on me. How hard this was going to be for me to wait for you to come home, etc., even last month the post listed out all the stuff that I was letting go. Things have continued to evolve and you've really changed me. I started to have thoughts about what life would be like and none of what could be considered losses for me personally phased me. I'm far from a perfect mom, but I do feel like for the first time I get this whole selfless thing. None of that stuff matters anymore. If everything has to change and even if I'm unable to do certain things I really enjoy, there truly is zero resentment. You're here with us, and that's all that matters.

All about you:
  • You have big beautiful brown eyes -- your brothers' eyes took a while to settle in to a color, yours have been a dark brown from day one.
  • You have curly hair! All the nurses comment on it and for a while, I dismissed that it was just oily and matted from laying in bed. Nope, there is a curl to it. Who knows where it came from, but as Dad says, no one in the family has a lung issue either...
  • You are so alert and love to look around. People are always coming around to say hi to you and since I'm usually holding you, they stand to one side of the chair or the other and you just stare and track them.
  • You love your mobile, you also love looking in the mirror.
  • You do pretty well with tummy time, which we occasionally do in the bed, but mostly I do when I'm holding you and lay you over the boppy. Often I'll put the mirror right there for you to look at yourself.
  • The heartbeat on your sound machine is most comforting to you.
  • You're a good sleeper and it sounds like you're more consistently sleeping from 1-7am (I guess it helps that you get fed through your tube and don't need to wake up to eat!). 12am-1am seems to be a fussy time.
  • You love the male RTs, Cody in particular.
  • Your favorite book is Fuzzy Bee, thanks Meyers!
  • You've taken to your wubbanub kitty to help your paci stay in but haven't really taken to the lovey blanket I got you.
  • You're tolerating headbands nicely (so much fun now that your cpap headgear is off!)
  • Your bottle lip quivers when you cry.
  • You do not like being in a wet diaper.
  • You smile a lot, people are always telling me how you smiled at them. I actually don't get all that many smiles directly to me... maybe you're bored looking at me, that's okay :)
  • You love looking up at the big screen near your bed that displays the time and any L&D pages to the NICU staff. The supply cabinet and exit sign, also visible from your spot, also capture your attention.
  • You run hot. We finally were able to put you in clothes a few weeks ago and you're starting to adjust to them now, but in the beginning, you were sweating through an outfit immediately.
  • You finally had your first tub bath the other night. You were not a fan. They swaddled you which I guess is a preemie trick and maybe that helped a little. We were able to get you clean but you weren't too happy. You barely fit in the little tub they had. Your primary nurse Elizabeth got to help me bathe you. She thanked me for letting her be a part of it and said she had been looking forward to that moment for weeks. (Me too!)
  • You cross your feet like W did as a baby. In fact, there are lots of little mannerisms, faces, etc. that I recognize from your brothers as well.

  • Dr. Richburg was cooing at you one day a few weeks ago, saying 'Hi Colette, can you give me a smile?' and on command, you give her a big smile. I think we were both surprised, it was the best!
  • For all that you've been through, I still can't get over what a happy, calm baby you are. 
We are so incredibly proud of you. You have so many people rooting for you. You've spent 96 days in the NICU and while you're getting closer, we still don't know when you'll come home. But we're ready. I dream of the day we take you outside (and hope to convince Dad to let us walk you home in the stroller instead of driving) -- I don't think there could be anything better than walking to the hospital like I do every day, but that time walk home with you with us. I know you can do it. I'm not sure if it will be before next month's post, but that's okay. You've got this! And we love you so much!!

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