Emmett is a rock star. Another boring day today and he’s still doing fantastic on the CPAP. I held him for almost three hours and he was so content the entire time. He was sprawled out as if he didn’t have a care in the world. Unfortunately, his weight didn’t change at all today. Better than a loss, but not exactly what we were looking for. The nurse and doctor aren’t worried, though, and pretty much reinforced what I mentioned yesterday – that the upward trend over time is what matters and daily gains or losses don’t mean much because there’s a fair amount of fluctuation at this age. He’s also at a point developmentally where he’s doing a lot more on his own, and the fact that he’s been on 21% oxygen (room air) for about two days straight means he may be burning more calories by simply breathing.
D and I both took Theo to swimming lessons this morning, and it was nice to get out as a family (or as complete of a family as we can as long as E is in the hospital). I headed back to the hospital after lunch and my parents came for a brief visit before swinging by our house to pick up T for the remainder of the weekend. Tomorrow afternoon D is trading me at the hospital and I’m going to get as much of T’s big boy room completed as I can while he’s away at grandma and grandpa’s.
I have to say, today was pretty boring. Emmett is doing fantastic on the CPAP, even if it looks worse (I miss seeing his sweet face!). He’s been having very infrequent events, and I got to hold him for three hours today and he was perfect. Unfortunately, he lost 30 grams at tonight’s weigh-in, but D brought up a good point to me this evening that we probably shouldn’t put too much stock in daily gain and instead should be looking at trends over a week. A nurse had told me pretty much the same thing a week ago — she said they like to see a gain of around 30 grams per day, but that it’s really inconsistent — sometimes it’s more, sometimes it’s less and sometimes babies randomly lose for no apparent reason. If the past few days are any indication, I’d say that’s spot on.
I attended rounds again this morning and the doctor said she was happy with how he was doing on the CPAP and didn’t want to make any changes to his care for a while to let him relax and focus on growing. So it looks like we’re stuck with the snorkel for a while longer. She’d like to re-evaluate where we are once he hits 30 weeks, which is Monday, and possibly graduate him to the high flow cannula at that time if he’s still doing well. They will recheck his sodium levels on Sunday, as they were borderline low at last week’s check. As long as he’s continuing to grow (and today’s weight loss was just a fluke), she isn’t too worried about his sodium.
I’m home with T tonight. Tomorrow I’ll take him to swimming lessons, and then the grandparents are taking him for the rest of the weekend so we can work on putting together his big boy room, and start getting the nursery ready for E’s homecoming, even if it is a long way off still.
Today was pretty eventful. Normally, in the NICU world that would be a bad thing, but today it was mostly good.
This morning, we got the news that the doctor would like to take Emmett off the NIV NAVA machine. His team had been discussing this idea for a couple days now, and they decided today was the day. But instead of going to a high-flow cannula like they talked about, they decided to go to a CPAP. While both options prevent his lungs from collapsing with exhale by keeping them partially inflated at all times, with the CPAP you can actually control and measure the amount of pressure, so the doctor felt this was a good intermediate step on the way to a high-flow cannula. Unfortunately, that meant putting him back on the snorkel mask he had hated so much when he was two days old.
So far he seems to be tolerating it well, though the machine is noisy and his face is almost completely covered. It’s hard because even though we know it’s a step forward (the respiratory therapist called this “remarkable” for his gestational age), it feels like a step back, simply because it’s so much more obtrusive. With any luck, he’ll only spend a brief amount of time on the CPAP before graduating to high-flow cannula — which looks almost exactly like what he had before, but offers even more independence and less support. With both the CPAP and the high-flow cannula, there’s no backup mode if he stops breathing, which is a big, scary step. Now, if he has an apneic episode, the assumption is that he’ll recover on his own and start breathing again. If for some reason he doesn’t, then the nurses have to rush in and help him. And that’s terrifying. But the way the doctor described it, he needs to eventually do this on his own, and the only way to see if he can is to try. If he has too many apneic episodes and/or his oxygen saturation drops too often, there’s always the option to put him back on the NIV NAVA. Two steps forward, one step back, right?
I didn’t get to hold him today because he was pretty exhausted from the transition, so that was disappointing. But he’s only had a couple events since getting the CPAP and they were self-resolved, so we’re optimistic this was the right move to make at this time.
On the bright side, he got to spend a few minutes without anything on his face before he got the CPAP and I was able to get a video of him breathing completely on his own and looking around. The nurses always comment on how alert he is for a 29 weeker, and how big his eyes are. They always tell us how cute he is too. They probably say that to all the parents, but we think he is pretty cute — especially as he fills out more and starts looking more like a newborn. He gained another 60 grams today and is up to 2 lbs 9 oz now!
Emmett is three weeks old today. Also, I have a new niece, born today. It was bittersweet hearing the news my brother and sister-in-law were in labor. On the one hand, I’m excited to meet my niece, and having cousins who are exactly three weeks apart in age will be fun as they grow up. But it also dredged up a ton of repressed emotions and I had myself a good cry. I was hit with the realization that their baby was supposed to be two months older than ours. That I’m still supposed to be pregnant. And I’m mourning the loss of a normal birth experience; the anticipation, the excitement, the rush, the joy. For as painful, long and excruciating as my labor with Theo was, I’ve always said I would repeat that day every day for the rest of my life if I could. There is simply no feeling in this world like having a screaming baby handed to you that you just gave life to. If I could bottle up that high and sell it I’d be rich.
But we didn’t get that this time. And since we’re done having babies, we don’t get that ever again. I got cheated out of that experience. Instead of intense joy, I’ve never been more scared in my life. I was alone and unsure if D would make it in time. Unsure if my child was even going to live. And there’s still so much uncertainty. Even the best moments so far like getting to hold him for the first time and having Theo meet him are overshadowed by the fear that this story still might not have a happy ending.
I’m glad one of my favorite nurses was on today. She saw how upset I was and gave me a hug. She pointed out how well Emmett is doing, and she offered to connect me with another mom so I would have someone to talk to. I mentioned yesterday that the support group isn’t very well attended, and actually last night’s session ended up getting cancelled altogether. This experience is very isolating. So this afternoon I had a “mom date” with another one of the moms in the NICU. Unfortunately (for me — good for her!) she is getting discharged tomorrow, but we really hit it off and she gave me her phone number and told me to call or text her any time I needed to vent or ask questions. She’s been here for more than three months and has a heartbreaking and amazing story. I’m so happy she gets to go home tomorrow and only wish I had met her three weeks ago!
I attended daily rounds again this morning. While there wasn’t much new to report, I’ve let the nurses know that as long as one of us is here during rounds, we’d like to attend. For me, knowledge = some semblance of control in an otherwise uncontrollable situation. His iron is a little low (27) and if it gets below 25 they will treat with a hormone patch. He’s on iron supplements currently, though, and they are hoping that will do the trick. They’ll check again in a few days. I think my eyes must have still been a little bloodshot from crying when I attended rounds, because everyone was giving me major “hang in there” looks, and the doctor kept assuring me he’s doing well. I’m feeling a bit schizophrenic on the sympathy front. On the one hand, I can’t stand it when someone like Nurse Bitchy completely ignores my pain, but I also get really uncomfortable with all the pity. I’m not really sure what I want — besides the privilege of still being able to complain about swollen ankles and make jokes about how awful it is to be so huge in this heat. That would be nice.
The good news is, I got to hold Emmett for a full three hours today and he did amazing. It was just what I needed after an emotional day. There’s still so much uncertainty in our future, but I’m trying to focus on the little things that mean the most right now: a day with fewer events, 21% oxygen for most of the day, and a weight increase of 52 grams (he’s now 2 lbs 7 oz!).
We had a good night last night and a good day today overall, though my head is swimming with medical stuff.
This morning, the respiratory therapist and nurse brought up the idea of taking E off of the NIV NAVA machine, which is what kicks in and breathes for him when he has apneic episodes. He’s having so few of these anymore (though still a fair amount of bradys and desats) that both the nurse and RT thought he could be weaned and go to continuous forced air via his cannula. This would still provide some backup and stimulate him to breathe if he didn’t, but wouldn’t give him the puffs that basically breathe for him. I’m not going to lie, the thought made me really nervous. As much as I want to trust the medical professionals, this just felt like a really big step when just yesterday we were implementing more support in the form of increased caffeine and starting him on a steroid inhaler.
The nurse invited me to attend daily rounds to discuss his care with the rest of the team, and I was relieved when his doctor said it might be a little too soon to wean off the NIV NAVA. Instead, she’d like to give him a few more days on the Flovent and let him gain more weight, and reassess in a few days.
Another discussion item in rounds was his elevated heart rate. Since boosting his caffeine he’s had a few episodes where his heart rate goes up really high (into the low 200s), which sets off the alarms and is always a little scary. The doctor assured us that periodic high heart rate episodes aren’t harmful, and that the benefits of the caffeine outweigh the negatives. She said we don’t typically worry about a high heart rate unless it’s sustained, or we start seeing other evidence his heart is working too hard, such as changes to his blood pressure or failure to gain weight. As of now his blood pressure is still good, though he did manage to lose 20 grams today, despite the fact that they bumped his supplementation up from 26 kcal to 28 kcal. The weight loss was really disappointing, especially since they’ve been telling us all along that weight gain is the priority. And the fact that it coincided with the increase in caffeine and higher heart rate has me a bit concerned. We’ve been told a day of occasional loss isn’t a big deal, as long as it doesn’t become a pattern. Here’s hoping it was a fluke and we have a nice gain tomorrow.
Despite the medical overload and the disappointing weight loss, today was a good day overall. He stayed on 21% oxygen almost all day and had way fewer events than the last couple days.
Oh, and something happened tonight that made me smile. I had given Theo a fortune cookie this evening and, well, I think I may need to save this…
Yesterday, in an attempt to start clearing space for when E eventually comes home, I listed our futon on our local Buy Nothing group. A nice family with two cute but rambunctious boys came to pick it up. Watching the boys interact with each other and get into mischief while their parents loaded up the futon, I smiled and told the mom I have two young boys and felt like I was getting a preview. Immediately, I wished I hadn’t said anything. Naturally, she asked how old my boys are. I briefly hesitated, then told her I have a three year-old and a newborn. When she asked how new, I told her he was almost three weeks old, as feelings of shame began to wash over me. I felt like I was somehow lying. I wasn’t in the mood for anyone’s pity at the moment, but in leaving out the full story I felt like a complete fraud. Because I don’t really feel like I have two boys yet. Emmett doesn’t quite feel like ours yet. And that made me sad, because I do have two boys and I felt guilty for feeling otherwise.
I wonder how long it will take to get used to these types of feelings. I know even once he’s home he’s not going to look like a typical three month-old. He’ll look more like a newborn. I’ve mentioned before that preemies usually go by two ages — actual and adjusted — until they’re around two years old. I recently joined a couple preemie Facebook groups and someone had asked the question a few days ago: “what do you tell strangers when they ask how old your baby is?” Interestingly, a lot of parents responded that they just tell strangers the adjusted age when they don’t feel like fielding the “but he’s so small!” comments or explaining that their baby was born premature.
It’s weird feeling like we don’t really fit in anywhere. We’re new parents, but not dealing with typical new parent stuff. We have a three week-old, but he’s more like a negative-11 week old. We’re bringing home a new baby in August, but I’m not pregnant.
When I was pregnant with Theo, I joined an online “birth month club” to talk with moms who had babies due around the time Theo was. This group eventually spun off into a private Facebook group and some of those moms are among my closest friends today, more than three years later. It’s been great to navigate all those milestones — from feeding, to sleep training, to talking, to tantrums, to preschool — with fellow moms in the trenches. I had hoped to find something similar when I was pregnant with Emmett. But all those August moms are still pregnant and I don’t belong there anymore. My world is suddenly completely different from theirs. But I don’t belong in a world with other babies born in May, either. We’re in this weird alternate universe. The preemie Facebook groups have helped some, but everyone’s story is so different, and they’re all at various stages (some are still in the NICU like us, while some have older children now). And while the success stories are inspiring, the cases where children have gone on to have significant physical or cognitive delays are discouraging. It’s a double-edged sword and I can’t decide whether these groups are more helpful or harmful to me at this stage.
The hospital has its weekly NICU parent support group tonight and I’m planning to attend again. It’s not always very well attended, but I’m hoping I can start to connect with other parents. But again, every story is SO different, even among current NICU parents. Theo has always been so textbook when it comes to milestones and funny toddler quirks, and I’m finding this experience very isolating without the “me too” moments.
After a good day yesterday, E had a lot of events overnight. Even though we seem to be having a good day about every other day, the events have been increasing in frequency. He also is more dependent on breathing support than they’d like him to be at this point. So D and I were invited to attend rounds this morning to talk about next steps.
Since many of his events seem to happen around feedings (a full stomach can make it hard to breathe), the nurse brought up the possibility of going to continuous feedings, instead of “meals” every three hours. They had already stretched out the feeding time from 45 minutes to an hour to allow him to digest his feeds without getting quite so full, but the doctor wasn’t quite ready to jump to continuous yet. For one, it would require an additional special feeding tube, but more importantly, he said the human body is designed to have meals, not continuous feeds so he preferred not to jump to that just yet.
The doctor recommended instead that we increase his caffeine intake. I can’t recall whether I’ve mentioned this before, but yes, you read that right — caffeine. They give caffeine to preemies because it prevents them from going into too deep of a sleep, because their brains are immature and they “forget” to breathe when they sleep too deeply. Since Emmett has gotten bigger (he gained another 28 grams today and is now up to 2 lbs 6 oz), and also because he’s eating more, his initial caffeine dose just might not be cutting it anymore. So he essentially got bumped from a grande to a venti.
The other thing they wanted to look at was his heart. We’ve known he has a murmur, which is really common with preemies and pretty much expected. But the doctor thought we should get a better look at it, so he ordered an echo cardiogram. Thankfully, we got the good news later this afternoon that the murmur is very mild and not likely the culprit of his increased episodes. It should resolve on its own eventually. In some cases the murmur could get worse down the road as his lungs grow, but at least now that we have a baseline, we know what to look for. If in a few weeks he suddenly starts having more episodes they’ll repeat the ECG to check its progress.
The good news is, after increasing his caffeine earlier he had a good rest of the day, so we’re keeping our fingers crossed that’s all we needed. The doctor also started him on a steroid inhaler (Flovent – the same thing I’ve used to treat my asthma) to treat some inflammation in his lungs. They’re hoping a couple weeks on the Flovent will allow us to start weaning him off some of his respiratory support so he can work toward breathing more on his own — an important step in getting him home eventually.
As if that weren’t enough excitement for the day, he also had his first bath! Now that his umbilical stump is gone, it was a prime time to do it. And he was starting to smell a little ripe. 🙂 He wasn’t a big fan of the bath and cried through most of it, but they put him on me for kangaroo care once it was over and we had a really nice session. I held him for almost three hours and his heart rate and oxygen saturation were really good.
After going home and having dinner with D and T, I’m back at the hospital and hoping for an uneventful night.
Today was pretty uneventful, which was a welcome change from yesterday. Probably the most exciting thing that happened today was that E’s umbilical stump fell off. It’s weird to think that by the time we take him home, he’ll be about the size and developmental status of a newborn, but certain things like worrying about the umbilical cord won’t be an issue. I wonder how many other things will feel not quite newborn yet not quite 3 month-old. E put on another 20 grams today, so he’s continuing to grow.
Oh, and his feeding tube is in his mouth again. After all the episodes he had yesterday the nurse wondered if maybe having the tube in his nose alongside the cannula was a bit too crowded and causing his breathing issues. I didn’t notice an immediate difference when she moved it, but he had significantly fewer episodes today. Maybe that was it. Or maybe yesterday was just a random off day. Whatever the case, I was grateful for a boring day today. I’m mentally spent.
Today was a rough day. Lots of bradys and desats. The doctor said it’s just normal preemie behavior, but I couldn’t ignore the fact that this was out of the ordinary for him. So the nurse suggested we check his blood gases to make sure he was still oxygenating well overall. He was, thankfully, but it’s just so nerve-wracking listening to those alarms all day. He seems to have the most events around his feedings, which the nurses say is normal since we’re pushing a lot of volume on him for his size, and when his stomach is full it can start to crowd his lungs. But since growing is the primary goal, and he’ll outgrow these events as he gets bigger, they feel we’re on the right course of care, especially since he always pulls out of these events on his own. The good news is, he’s up 30 grams to 1020 — or 2 lbs 4 oz — and three nurses mentioned tonight how much bigger and healthier he’s looking.
I’m finding all these events kind of hard to handle. At one point this evening I just had to go home for a few hours. It’s tough. On the one hand, I’m afraid to leave because I don’t want something truly catastrophic to happen while I’m gone. On the other hand, I can’t do anything about it anyway, and the mental break is probably much-needed. Someone once told me to make sure we go home often — after all, we have the world’s most expensive babysitters. I guess that’s true, but it’s certainly easier said than done.
D feels like he may be coming down with a cold, so I’m back here tonight for the third night in a row. I’m tired. At least E seems to be sleeping peacefully now and hasn’t had any events since I got back (never mind – spoke too soon).
These updates seem to be getting shorter and shorter because there’s less to report. I’m completely okay with that. Today was another good, relatively uneventful day, preceded by an uneventful night. He’s been on 21% oxygen most of the day (yeah!) and is having way fewer desats. They increased his feedings to 19 ML per feed and he’s put on another 20 grams since yesterday, bringing him to 990 grams, or about 2 lbs. 3 oz.
The biggest change for the day is that the nurse removed the feeding tube from his mouth and put it in his nose instead. He kept tonguing the tube and getting it out of position, so this should be more comfortable and secure, and also lets us see even more of his face. Since he already had the nasal cannula, you can hardly even see the feeding tube now, as it’s just tucked in with it. Here he is drooling all over me during kangaroo care today. 🙂
I had lunch with my boss and another coworker today. It was great to catch up, and they presented me with gifts for us, Emmett and Theo, cards and several gift cards from about 30 of my coworkers. Opening up the gifts and reading everyone’s messages made me tear up. The support we’ve received throughout this whole ordeal has been truly overwhelming.
Keeping up with the Hoffmans 