NICU – Page 9 – Keeping up with the Hoffmans

NICU day 21

June 8, 2016August 6, 2018 Keeping up with the Hoffmans

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!).

Keep fighting, little man.

Baby Emmett, NICU

NICU day 20

June 7, 2016August 6, 2018 Keeping up with the Hoffmans

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…

Baby Emmett, musings, NICU

Bizarro world.

June 7, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 19

June 6, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 18

June 5, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 17

June 4, 2016August 6, 2018 Keeping up with the Hoffmans

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).

Baby Emmett, NICU

NICU day 16

June 3, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Onto day 17…

Baby Emmett, breastfeeding, NICU

NICU day 15

June 2, 2016August 6, 2018 Keeping up with the Hoffmans

Today was a good day. D spent the night at the hospital last night and said he had way fewer alarms than the last time he roomed in. And today was the same. Fewer alarms are always good! Despite wanting to hold off yesterday on increasing his fortification, the doctor today decided to up it to 26kcal just to see how he did. He did great! He isn’t losing excess water any more, so it seems he’s handling the increase well. And he put on another 20 grams since yesterday, which is awesome.

D and I attended rounds this morning, and there wasn’t a whole lot to report, which is a good thing. We’re in maintenance mode right now. Or as his nurse said to me, “this is the boring part.” I’m totally fine with boring. He’ll have his third and final brain ultrasound on June 18 and will have his eyes checked on June 23rd. Barring any surprises or changes in health, until then they’ll just be fine tuning his breathing assistance and feeding.

Speaking of feeding, I’m finding that I’m getting a little obsessive with pumping output. I’m still a little behind what I should be producing at this stage, but I’m rapidly catching up. The lactation nurse says I should ideally be making 24 oz per day right now and I’m on track to get 21-22 today, up from 19.75 yesterday, which is up from 18.5 the day before. I’m taking fenugreek, drinking mother’s milk tea and trying my best to stay well hydrated. I’m tracking all my sessions on an app that puts everything into graphs and tables for me. I do love me a good graph! Breastfeeding was always something that was so important to me with Theo, and even though I got off to a rough start this time around, I’m trying really hard to make this work. I’ll be the first to admit, I have control issues. And since so much of what we’re dealing with is beyond our control, this is something I feel like I can control, though not without a ton of effort on my part.

E and I had a great kangaroo session today. He did have one brady episode, but aside from that, he was great and we snuggled for more than two and a half hours. I was completely blissed out, and E got down to 21% oxygen and still managed to keep his saturation in the 90s most of the time. In fact, I went home for dinner shortly after our session and came back a few hours later and he was still hanging out happily in his isolette at 21%. It really is amazing what that human contact does for him. And it makes sense. Babies need to be held a lot, and he should still be on the inside – the ultimate hold. It’s just too bad it’s such a process to get him in and out of his isolette and that we can only do it once a day. I’m looking forward to the day I can hold him all the time. I did a lot of babywearing with Theo and I have a feeling I’m probably never going to put E down once I get to take him home.

Baby Emmett, musings, NICU

As long as he’s okay, I’m okay.

June 2, 2016August 6, 2018 Keeping up with the Hoffmans

Predictably, we get asked a lot: “how are you doing?” My answer is usually, “we’re okay.” And it’s true. We’re okay. Not great – this isn’t an ideal situation, no matter how you spin it. But I’m acutely aware of how much worse it could be. And that fearful day I was in labor by myself, I definitely pictured all the worst case scenarios. I was mentally prepared to say goodbye.

But as it turns out, Emmett is a NICU rock star. The doctors and nurses all say so. All of his “setbacks” so far have been minor, and par for the course for a baby born before he even reached the third trimester. So while I can’t help but hold my breath with every desat and feel like my heart stops with every brady, it’s completely unreasonable to expect a micro-preemie to regulate his oxygen levels or heart rate on his own. The doctors have every expectation he’ll grow out of this as he gets bigger and stronger, and by the time his original due date rolls around, he should be a fairly normal infant, just three months behind what his actual age says. Most preemies go by two ages, actual and adjusted, until they’re about two years old, by which point they usually “catch up” to their actual age.

That said, I’m aware that things can change on a dime. As I’ve mentioned multiple times, the NICU mantra is two steps forward, one step back. So far we’re more like three or four steps forward for every step back, but I know that may not always be the case. There may even be days where we are taking more steps back than forward and so I’m trying to temper my optimism with a good deal of caution. People keep telling us how strong we are, but I can’t take credit for that — it’s only because Emmett is so strong. If there comes a day where we take some major steps back, I might not be okay. But until then, I keep repeating: as long as he’s okay, I’m okay.

We can handle anything as long as he’s okay.

Baby Emmett, NICU

NICU day 14

June 1, 2016August 6, 2018 Keeping up with the Hoffmans

Last night was a little rough. It wasn’t anything terribly serious, but Emmett had about a million desats and a few bradys and the alarm was pretty much going off all night. And when he wasn’t tripping his alarm, he was fussing, so I was up consoling him a lot. Needless to say, I didn’t get much sleep. I’m home tonight and hoping to catch up.

The nurse thinks the increased desats may be partially due to the increased feed volumes. Basically his stomach gets so full it pushes up on his lungs and makes it a little trickier to breathe. They aren’t too worried about it and say he should learn to adjust pretty quickly. Right now the highest priority is putting on weight, as the desat and brady episodes are something he should naturally grow out of as he gets bigger.

Unfortunately, we had to postpone one part of his feeding plan. In addition to increased milk volume, we were supposed to increase the fortification of my milk from 24kcal to 28kcal — but he’s losing a little too much fluid via his diapers and the nurse thinks he might not be processing the fortified feeds as well as he should. So we’re going to give it a few more days and try again. At his weigh-in tonight he was up to 2 lbs. 2 oz. Keep growing!

The nurse drew his bili again this morning and it was slightly elevated — up to 3 from 1.5. It wasn’t high enough to put him under the lights again just yet; they are hoping at this point he can regulate his bilirubin on his own. So they’ll check again in a couple days and decide then whether he needs another session.

He also had another head ultrasound today to check for brain bleeds. Apparently this is something they do three times in preemies — at one week of life, two weeks and then a final time at 30 days. I had assumed since our first scan was clear that they wouldn’t be doing one again, so I was a little surprised when the ultrasound tech showed up on our room this morning and I got a little emotional with worry. Happy to report all is still clear. At least now I’ll be prepared for the third and final ultrasound in another couple weeks.

We had a good kangaroo care session today. He was very mellow and stayed on me for about two and a half hours. I also got to help the nurse reposition him in his isolette, which included holding him while the nurse repositioned his sleeping pad.

All in all, a pretty good day, despite a sleepless night before. E is now two weeks old, which is really hard to believe. It feels like it’s been forever and just yesterday at the same time.