Baby Emmett, NICU

NICU day 18

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.

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Baby Emmett, NICU

NICU day 17

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).

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Baby Emmett, NICU

NICU day 16

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. 🙂

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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…

Cozy baby.
Cozy baby.

 

Baby Emmett, breastfeeding, NICU

NICU day 15

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.

Bliss.
Bliss.
Baby Emmett, musings, NICU

As long as he’s okay, I’m okay.

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

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.

Those are my hands holding him!
Those are my hands holding him!
Baby Emmett, NICU

NICU day 13

Emmett had a pretty good day today. His O2 saturation levels are still all over the place, but that’s to be expected at this age. He had his physical therapy evaluation this morning and the PT recommended a special sleep positioner that feels kind of like extra moldable memory foam. Since they put that in his isolette, his O2 levels seem to be more stable and he was able to come down from 30% oxygen to 23% (the goal is to stay at 21%, which is room air). He does look pretty cozy on his new positioner, even on his right side, which seems to be his least favorite and usually requires the most oxygen support.

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The doctor decided to increase his feedings by another 2 ML per feed since he’s handling his feeds so well and said our primary goal right now is gaining weight. He was up another 6 grams today, which isn’t a lot, but every little bit in the upward direction helps.

I was finally able to hand off everything at work today, which feels good to get off my plate. When I was pregnant with Theo, I had kept a running “hand-off” document for the last month of my pregnancy — something I could give to a coworker at a moment’s notice as an instruction manual for all my programs while I was gone. I had every intention of creating something just like that this time, but obviously didn’t expect to have a baby three months early! But I finally got that done today and did the official hand-over to my boss and another coworker, and it feels good to check that off so I can focus on E. Even though no one at work has been bugging me about anything, it bugged me knowing I had left so many things up in the air. I’m officially off work until June 29, at which point I’ll go back until E comes home (I may still work some of that time remotely so I can be at the hospital, depending on how things are progressing here), and then take the rest of my leave. We still need to figure out logistics, and it will be weird going back, knowing E is here, but with any luck things will continue to be fairly uneventful and E can just work on getting bigger and stronger.

I attended the NICU parents’ support group at the hospital for the first time this evening and I really think it did me a lot of good. Even though I feel like I’ve been handling things pretty well (and writing has truly been great therapy for me), I realized tonight that I’m dealing with a lot right now that I maybe wasn’t fully recognizing — some postpartum depression, guilt over what happened, a major case of the “what ifs,” stress around whether I’m pumping enough and guilt over how this may be affecting Theo. I used to give him his bath and tuck him into bed every night, and now I’m only doing that about half the time, since I’m spending half my nights in the NICU. I feel like I have so little time with Theo that I need to maximize the time I do have — but I’m tethered to a pump every hour and a half and am physically stuck. And then I feel the need to be with Emmett all the time too. I have anxiety when I leave the hospital, worried something bad will happen when I’m gone. It’s funny how just yesterday I talked about feeling good about the balance we’ve been able to strike — and while I do think we’ve struck as good of a balance as we possibly can from a time perspective, it still feels like it’s somehow not enough. I think the mental balance will probably take a while longer to reconcile.

Baby Emmett, NICU

NICU day 12

I should be 28 weeks pregnant today. Mondays were the day I got to jump to the next week. It’s surreal to be staring at my baby through an isolette instead of staring at my growing belly (not to mention, my body is almost back to normal again, which is weird too). Never in my wildest dreams did I think we’d be here, and some days I still feel like I’m dreaming. I kind of alternate between just going through the motions in a daze and feeling completely overwhelmed with reality. But at least for now I feel like we’re settling into a pretty good routine, and balancing home life and NICU life – something I was told was one of the hardest parts – hasn’t been as hard as I’d imagined. Part of that might be my tendency to time manage better with a really full plate. But I think a huge part of that is having an equal partner in D, and having a child at home who forces us to maintain some sense of normalcy. And even though D went back to work, his work is very flexible and he’s able to do a lot of it from the hospital. We manage to have dinner together most nights, and lunch together pretty frequently as well. It’s not an ideal situation by any means, and some things like sleep, housework and the dogs have definitely taken a back seat. But overall I’d say the balancing part isn’t as bad as it could be.

I didn’t get a lot of sleep last night. E’s alarms kept sounding – he had several desats, even though his oxygen was turned up to 28%. He also had a few bradys, which are always a little unnerving. The good news is, his bili levels were low again (1.5) so he got to come off the lights. It’s normal for them to come on and off several times – and even term babies sometimes deal with this – but I’ll be happy when the lights are gone for good. He’s eating like a champ and we’re up to 16 ML every three hours, which is considered a full feed for this age. From here on out it’s just fine-tuning as far as feedings go, depending on his weight and other needs. The doctor mentioned starting him on vitamin D (and something else I’m blanking on right now) and iron. But those will just go in through his feeding tube. Typically preemies get to start bottle or breast feeding around 34 weeks — 33 at the earliest (they have a hard time coordinating sucking, swallowing and breathing before then). But in the meantime, we’re told the pacifier can help develop his sucking, and when we’re doing skin-to-skin I can sort of follow his lead and if he makes his way toward the breast (some babies will do this instinctively – pretty amazing), to let him. As of now he’s still pretty tiny and immobile when we’re doing kangaroo care, so I don’t see that happening any time soon. But that’s encouraging to look forward to.

Speaking of kangaroo care, today’s was kind of a bust, which was really disheartening. He just couldn’t keep his oxygen levels up, even though his oxygen is usually higher when he’s on me. He just seemed kind of stressed out and not breathing well, so the nurse ended up putting him back in his isolette after only about 15 minutes. Incidentally, right afterward she suctioned a large booger out of his nose and then he started breathing a little easier. She said we could try kangaroo care again later, but I had to leave shortly afterward to get home and take T to a birthday party.

D spent the afternoon at the hospital and will stay the night tonight. He said E had a really good rest of the day with no alarms or anything. Maybe it really was just a booger. Amazing how something seemingly insignificant can cause such problems for a preemie. At one point this evening the nurse redid his cannula and D was able to snap a rare photo with E’s face more visible while it was briefly off. He really is growing and changing fast, and I think he looks a bit like Theo! His weight was up to 921 grams today, or just over two pounds. Keep growing, little Emmett!

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Baby Emmett, NICU

NICU day 11

Another day down. I’m back in the NICU after about 24 hours away. I’ll stay through the night and the morning, and then D and I will trade off so I can take T to a birthday party tomorrow afternoon.

Emmett lost his IV last night, but they said he was doing so well on his feedings that they decided not to reinsert it. So there’s one less tube to worry about, at least, and now the IV sensors won’t be beeping every time the bag starts getting low. He lost about 10 grams between yesterday and today, which they attribute mostly to lack of IV fluids. He’s up to 14.2 inches, though, so he’s definitely growing. His bili levels were up again this afternoon, so he went back under the lights, and they’ll recheck his levels tomorrow morning. Things have otherwise been pretty uneventful — still going up and down on his O2 levels because he keeps either desatting or high-satting. All pretty par for the course, though.

This morning I woke up with a bit of a stuffy nose. I think it was just allergies, but with T’s runny nose yesterday I decided to play it safe and not hold him today. So D got to hold him for the first time instead. I wasn’t there since I was home with T, but he got a nurse to take a photo. Heart melted.

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D’s mom came to visit this afternoon. Since E was under the bili lights instead of having his isolette covered by a blanket, she got to see quite a bit of him, though his eyes were covered by a mask the whole time.

That’s about it for today. “Blissfully boring,” as I like to say.

Baby Emmett, NICU

NICU day 10

We have hit double-digits on days in the NICU. Here’s to hoping we don’t ever hit triple digits.

Last night and today were relatively uneventful with E again. He had a few desats (oxygen saturation levels dropping below the 88% threshold), but only one bradycardia that I’m aware of today. I held him for almost two hours again this morning (he did amazing!), and then I went home and passed D the baton. D’s dad and step mom came to visit this afternoon while I watched Theo, and then they all came home and the in-laws brought us dinner. Then D went back for the night. E got weighed again tonight and is up to two pounds! You know your perspective is skewed when that seems SO BIG! Proud of my boy. Feedings are going great. We’re now up to 12 ML every three hours, and they began fortifying my milk today with extra calories and protein to help him pack on more weight.

So, tonight was supposed to be my night to get some rest at home, but when I was giving T a bath, he complained that his penis hurt. Then after his bath, when he was going pee, he started crying and said it hurt to go. Great. Sounded like a UTI to me, so I got him dressed and loaded into the car, and off to urgent care we went. Only when we got there, urgent care was closed. (D asked me if they had “I hope it wasn’t really urgent” on the door.) I didn’t think it was quite ER-worthy so I told Theo the doctor went home and we’d have to wait until morning. His response: “The doctor was tired?” (Yes, sweetheart. So is Mommy.) When we got home, he went pee just fine and said he was all better. Go figure. I guess I’ll see how he feels in the morning and whether I actually need to take him in. I hope he isn’t starting to make stuff up for attention. We really have been trying so hard to make things as normal as possible for him throughout this whole ordeal.

In other T news, he woke up from his nap this afternoon with a runny nose. I’m really hoping neither D or I catch his cold, or we’ll have to stay away from the NICU until we’re better. That would be pretty devastating. So far it hasn’t been so traumatic to leave E at the hospital because we’re never gone for long and one of us is almost always there. Not being able to see him for several days, though? I think that would break me.

Tomorrow I’ll spend the morning with T, then D will come home and have lunch with us and then I’ll head back to the hospital for the afternoon/night. Onto day 11…

Kangaroo selfie. (Pretty sure this ordeal has aged me about 10 years.)
Kangaroo selfie.