It’s been kind of a hectic evening in the NICU. Emmett is fine, but there was a delivery that required almost all hands on deck around 10 p.m. (I’m sure that was me a month ago!), and it’s been chaos and hustling and loud beeps and alarms ever since. I had to close my door because I don’t really want to know what’s going on, in case it’s not good. Feeling really thankful for private rooms right now. My heart goes out to those parents because I know just how scared they must be.
A byproduct of this dramatic delivery is that Emmett’s nurse got called away and we got temporarily stuck with the roving nurse that just fills in on people’s breaks. She didn’t position him very well for his feeding (and didn’t even realize his feeding tube was wrapped around his neck until I pointed it out), and then shortly after she left, Emmett started spitting up while on his back and went into a pretty big desat. No one even came to check on him until I had to go flag down another nurse. No clue where the roving nurse was. E seems to be comfortable now, but I’m spent. People keep telling us to get away and take some time for ourselves, but then stuff like this happens and I wonder how long he would have been spitting up and desatting before someone came to help him? I know this is a very good hospital and I’m sure the NICU staff know what they’re doing, but there’s just no substitute for having a parent in the room with him.
Other than an eventful evening, today was actually pretty good overall. Emmett had his feeding tube moved from this mouth to his nose again, which just looks so much more comfortable, lets us see more of his face, and allows him to get his hands to his mouth like normal babies. I think we may have a thumb sucker! He put on another 30 grams last night, and 20 more tonight, so he’s now up to 2 lbs 13 oz. They’ve also increased his feeds to 25ML.
Despite the fact that he’s doing great on five liters of flow in his cannula, the doctor decided to give him another day to rest and grow before going to four. I ran into the doctor in the kitchenette this evening and he said all the respiratory therapists are basically begging him to let them lower the flow, though, because E is such a rock star and can handle it. He probably can handle it, but there’s really no rush. Even if we weaned all the way off respiratory support way ahead of schedule, it’s not like we’re going home next week. And we’re still 2-3 weeks away from E being developmentally ready to breastfeed, which would be the only other reason to push for less flow. I’m totally fine with this doctor’s more conservative approach.
It’s after midnight and I’m exhausted. Things are still fairly chaotic here but I’m going to attempt to get some sleep anyway.
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.
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…
We had another great day today. Most of it was blissfully boring. One exciting milestone we reached, though, is that we finally got to start feeding. So far it’s just one ML of pumped milk through a feeding tube, every three hours. As long as his system tolerates it, we’ll gradually start increasing the amount. We can also take a small dropper and give him a few drops on his tongue or lips to give him a taste. He loved that. He became very alert and lapped it right up.
D spent the night and the first part of the day with him, while I stayed with T, and then we switched places at noon and D took T for a hike after his nap. I missed his first feeding and by the time I got there for his second feeding, I could already see a remarkable difference in his appearance. He just looked so much healthier and vibrant. The real test will be whether his digestive system tolerates it, and while we have yet to see the first diaper to officially evaluate its success, the doctors could tell it had at least moved beyond his stomach, so that’s a great sign that his system is working as it should.
They aren’t making any changes or adjustments in the near future, aside from possibly lowering his oxygen concentration since he is getting better at breathing on his own. Unless anything changes (which we’ve been warned, can and does happen a lot), we are sort of in maintenance mode right now so he can continue to grow and gain strength. He will have a head ultrasound on the 25th to look for brain bleeds (standard protocol for preemies) and his eyes and ears will be checked at some point – usually around 32ish weeks.
I’m spending the night at home again tonight, while D stays in the NICU. I’ll take T to school in the morning and then D and I will both hang out at the hospital for the day tomorrow. I’m hoping we can find a good routine so we can minimize any disturbances to T’s world.
Hiking Wallace Falls with daddy.