desats – Page 4 – Keeping up with the Hoffmans

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, 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.

https://youtu.be/fMX0Lixn3qk

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.

Baby Emmett, NICU

NICU day 12

May 30, 2016August 6, 2018 Keeping up with the Hoffmans

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!