Baby Emmett, NICU

NICU day 22

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!


Snorkel baby.
Baby Emmett, NICU

NICU day 20

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…



Kangaroo snuggles.
Kangaroo snuggles.