Baby Colette, Two Months Old

Here we are, another month in and wow, it's been filled with ups and downs. Anyone who's familiar with the NICU will attest to the experience being like a roller coaster and I'd have to agree. Reading last month's post, we were in a pretty good place. Yes, progress had been slow, but it was generally moving forward. The past month there were some huge setbacks -- days that took us all the way back to her status during her first week of life -- not to mention getting the news that there may be an underlying (and very serious) issue with her lungs that takes what's she's dealing with to a whole new level. The bad days are so incredibly hard. There have definitely been days this month when I wonder how she even has a possibility of ever coming home, I've seen her so sick. The good days are so good, and I convince myself of the opposite. How can she not come home?? The good days are hard too as I see her beginning to interact with me more, more alert and awake, making progress, and of course I'm becoming more and more attached, but then let my mind wander to the fact that she still may not come home, and it just seems cruel.

I need to be thankful that currently we're in a fairly good place. She's had a great week. I could see her feeling better from about last Sunday on, it did take her a few days to recover from the biopsy but each day she improved. The beginning of the week she was really alert, they were able to wean her medications more and Tuesday was a great day, she was taken off the ventilator and is now on CPAP and doing very well. She's been on 'room air' at 21% oxygen, or just slightly higher, even with them weaning on some of the settings, all week long. We've gotten to hold her a lot again. The right chest tube is out and fluid doesn't seem to be reaccumulating and the left is producing next to nothing. She's been tolerating continuous feeds of the special Monogen formula and they're increasing those daily getting her closer to 'full feeds'. These are all great signs.

Unfortunately we still have the biopsy results hanging over us, and though the outcome won't change  the treatment, I think it will give us a better idea of what we're dealing with, the likelihood that she'll ever leave the hospital and if so, what her future may be like. We should find out this week. Oddly, it's been easy to live in the moment and not be on edge waiting for the results. I think it helps that she's made huge strides since we got the results of the CT scan showing the lung issues so it justifies having hope that everything may somehow work out. I really should be keeping a daily or at least weekly journal though since the range of emotions through all of this is so wide. If I had written this post 2 weeks ago, everything would sound much different.

Though she's doing well, one of her main challenges at the moment is being weaned off morphine. I've developed thicker skin over the past two months and whereas at one point her being stuck multiple times for an IV would've put me over the edge, I now calmly ask how many tries it took, and move on. Despite this, it's pretty upsetting to see your baby have tremors due to withdrawal from the morphine. They're monitoring it closely and luckily she responds well to firm containment so we're hoping things will settle down in the next day or two. I'm so grateful for the nurses who are willing to spend their time finding ways to comfort her through touch and not just another bolus of pain medicine. She responds well to containment, hand-holding, a head massage and patting. Colette is a high maintenance patient (in fact, she gets her own nurse, whereas most nurses handle two babies at a time) so I appreciate those who stay late charting because they were busy calming her throughout the shift.

This month:
June 18 - oxygen needs increasing, fluid reaccumulating on the right, so chest tube back in
June 24 - oxygen needs increasing again, fluid reaccumulating, readjusted chest tubes, put on non-invasive CPAP
June 27 - oxygen needs spiked to 100%, reintubated
June 29 - CT scan
June 30 - CT scan results not good
July 1 - Colette baptized, left chest tube again
July 4 - new norm of 50-60% oxygen
July 7 - lung biopsy
July 9 - oxygen still at 50-60%
July 10 - chest tube replaced, oxygen starting to go down
July 12 - extubated, on CPAP,
July 13 - octreotide started, weaning off of morphine
July 15 - boys came to meet her
July 17 - oxygen has been in the low 20s all week

It's been a better month in terms of consistency of care. She has several 'primary' nurses. Thomas, a French nurse who is with her during the day shift every Saturday and Sunday, Ashley, who I've only met once or twice only works the night shift (11:30pm-8am) and Elizabeth, who is often in charge so we still don't have her too frequently, but she's a very experienced, young, calming nurse. Jo is another one of my favorites, she loves to chat which is great as she's on the day shift so I always love when she's there. I've been there when she's called on her day off to check on Colette. There are many others too, and I feel like I know most of the nurses in there. In general, I feel lucky we've gotten some of the same nurses again and again, which is great for Colette since she has so many unique things going on. When she has a nurse for the first time, they often default to me when it comes to her preferences, transferring her to be held, etc. I've had different nurses come up to me and tell me how attached to her they're getting, but the last week has been so much happier. Everyone's coming by her isolette because they heard how well she's doing. Such a change from several weeks ago. You know things are bad when Jo asks if she can bring in an angel to hang on her crib, or when all the nurses are generally just more sympathetic. You never want to hear, 'there's no diagnosis we're hoping for' (regarding the biopsy) or 'there's no way to spin this but extremely worrisome' or 'this makes us very concerned', all of which we heard. We've also heard over and over again how strong she is, how feisty and in several heart-to-heart conversations with different nurses, they've cautiously reassured me that with all their experience, they can usually tell which babies are going to fight to be here and she definitely has that fight.

We just finished another doctor rotation and Dr. Slagle was amazing. She partly lucked out that Colette had a good two weeks when she was on, but she comes around beaming when she sees how she's doing. When I'm there all day, she stops by multiple times a day to chat and fill me in. She's cautious, as she says, 'Colette has burned us before', so she knows not to be too optimistic in her progress because we're never sure what she'll throw at us next. You start to get attached to the doctors and are bummed when their 2-week shift is over and you have to move on to the next doctor (though they're all sort of around so it's not like they're gone for good). Each doctor has their own approach and I did like that Dr. Slagle was invested in me, our family and everyone's well-being and not just listing off items on Colette's to-do list for that day.

It's amazing what becomes the norm when your a NICU mom. I was chatting with two other moms in the pump room the other day and we were talking about surgeries our babies had, or were going to have. Like it was no big deal. No tears, no emotion, just logistics. Now that certainly doesn't mean there isn't emotion, on the toughest days, I can fall apart any moment, but some of the conversations Dave and I had and what we could discuss matter-of-factly is pretty crazy. But I've learned it's all relative. In the early days, when she was expected to recover and that we just had to be patient, I felt so sad that I was 'missing out' on the whole newborn experience and how hard it was going to be to wait until July or early August to bring her home. How would we ever do it?? Then I was devastated that she may never be able to have my milk and how awful it would be to pump all this milk for no reason (I'd donate it at least though). These emotions are all totally valid but wow, how things have changed. We've been doing this for over 60 days (and even more when factoring in getting the hydrops diagnosis, hospital bed rest etc.) and if it means she would come home, I could handle 60 more.

Hospital bedrest and missing out on a 'normal' pregnancy? Fine.
Having a preemie? Okay.
Miss out on a 'normal' delivery and postpartum stay with my baby in the room with me? Over it.
Lose the newborn days at home, essentially miss out on her first however-many months? Fine.
Get over the chance at breastfeeding (one of the things I was most looking forward to with 'just one' as I dreamed of how easy it would be to feed anywhere, etc... not that it's always easy). Done.
Pump every 3-4 hours for months. Give up on breast milk despite a freezer-full of milk. No problem.
Months in the NICU. I can handle that.
Lifelong oxygen support. We'll make it work.

It truly is relative. We pray that if there's a way she can have a happy and relatively healthy life, then to let her come home and we'll figure the rest out.

It's almost a bit comical (and hey, we can laugh about it!)... Colette has really taken over a corner of the NICU. It probably helps that she has someone visiting most of the day, but with all the doctors and nurses needed to care for her, space-wise, she keep inching up on Antonio's area. I was a bit taken aback when I walked in on Monday to see her 'tree' of pumps. Before she just had one 'branch' I guess you could call it and a few pumps on the counter. I guess they decided to consolidate but it was still overwhelming. And for some perspective, most babies (if they even have a pump), have the orange one which is for milk feedings through a tube...

This is also totally ridiculous, but again, I oddly joke about it. She has so many lines and different medications going into her body that her sweet nurse Elizabeth decided it would be easier to have a visual for each nurse coming on to figure out what is going into which IV. Whatever works.

Colette. My sweet girl. It was odd that you never felt small to me, even on the day you were born. You were bigger than either of your brothers (even if a pound or two of that happened to be fluid...). And despite you having little food over the past two months and mostly being on a TPN cocktail, you're growing well and seem so big for your small isolette. You're probably still the only baby in the NICU who the doctors are hoping will lose weight... definitely not a common thing around those parts. It's so nice to see some of that edema finally coming off. You still have a neck roll, but it's no longer puffy from fluid. Your face is full, but not as puffy as before either. Though they're still using a dry weight of a little less than 9lbs, your true weight is closer to 10lbs now. We're trying to spruce up your isolette and have started using some of your swaddle blankets for sheets. I've tried putting headbands on several times, but they don't stay on great, and honestly, it's not a priority for the nurses to keep them in place with all the fussing they have to do as it is. Now that you're on CPAP again (yay!), you have that stylish headgear so headbands will have to wait. You've taken us on quite the ride this month and we're still not sure where the road will end. Dad described it best, you are strong, but also fragile. It was a much-needed treat to have you so interactive and alert this week. You love looking at your mobile -- the Child Life specialist suggested putting some photos of us on the pieces that hang down and you really do love looking at all of us. Despite the last couple days being a bit tough with your withdrawals, it was so nice to see you feeling more comfortable after recovering from the surgery. It's odd to explain, but everyone, including me, could tell you were feeling better. I loved to see you grabbing at rings I brought in. And being able to hold you for hours on end has been so great after our hiatus while you were on the ventilator again. You're so much like your brother William, of course you look just like him, but I think you're becoming quite accustomed to having a staff to care for you. You're definitely the most high maintenance baby in your part of the NICU. Most of the babies are just there to feed and grow and thus their isolettes are closed and covered for almost all of the day and night. Yours is always open, both because you were bigger and never had an issue regulating your temperature, but also because you have so much going on, nurses and doctors need easy access. It requires a minimum of three people for me to take you out of your isolette to be held, but I have to say, I have it down pretty well. And it's not easy with so many wires and cords hanging off of you. Despite the pain that is transferring you, it's so good for both you and me. You do pretty well for the most part, despite having a mask and long tube coming off of your head at all times. Usually you'll snuggle in and I've even been able to read several books while holding you. You're lucky you got one of the few moms who has to pee very infrequently. The nurses are always surprised when I say I plan on holding you for 3.5 hours or longer... 'have you eaten? have you gone to the bathroom??' I could hold you forever if I didn't need to get up to pump. You have already transformed your dad and I. I think we're stronger, both as a pair and as individuals, by this experience. It makes me so sad that you have to go through all this, but your strength over the last week has given new hope that if anyone can get through this, you, and we, can. Last month, while frustrated that you hadn't progressed further, I was excited to see where you'd be this month. I wouldn't consider myself a patient person at all, but I now feel like I can continue to take it one day at a time. I won't dream about where you'll be at this time next month. I've learned to forget all expectations. I celebrate the progress, cautiously, but await the set backs, as I know they will continue to come. I remember I wrote a blog post a while ago, before you were here, about 'one step forward, two steps back' and Dave corrected me, saying it's 'two steps forward, one step back'. In the NICU, I've talked to other nurses and they say the phrase the same way I do, which initially was a mistake, is unfortunately how it often goes in the NICU, you make a tiny bit of progress, but then are backed up again and again. Those feelings of intense impatience I had right after you were born... 'how will we ever make it 6 weeks, or 8 weeks, or longer?' are gone. If we're lucky enough for you to come home with us, I know it will happen when it happens. You still are so far from that that there's no reason to get caught up with the overwhelming amount of progress you still need to make. Nurses continue to be impressed with your strength again and again -- you often need 3 or 4 nurses to contain you when they're doing something you don't like -- but I know that's a very good quality to have for a sick preemie. Today you're two months old, you've spent 62 days in the NICU with no end in sight. As we await your biopsy results, we know whatever happens, we're soaking in every inch of progress you're making and ready for whatever the future holds. You have so many people -- people we don't even know -- holding you up in prayer. You are so loved!

No comments