This is Ambrose getting his first bottle! This morning at 11 two women from PT stopped by to evaluate his mouth and get him going on the bottle. They said everything looked great with him, for the most part, and then started feeding him. For a first-timer, he took it like an absolute champ — downed two of the three ounces before getting sleepy and stopping. I even got my own shot with it!
Excuse the bluish light in this photo — Ambrose’s neighbor is having some jaundice issues.
Honestly, there’s not too much news. The biggest thing is that we’ve got him down to a 2 on the oxygen flow. The decrease is going to be pretty gradual from here on out. We asked today what flow he’d need to be on in order to come home on oxygen (not ideal, but a possibility) and the answer is, something below .25. So we’ve got a ways to go. The doctor estimates we could be out within the next week or two.
Which is sort of crazy to me. I feel like our lives are in limbo right now, and that it’s never going to end. But Ambrose is doing great, and he is going to come home with us some day. But that day feels like it will never come. It’s sort of like when I was pregnant: I thought I would never be un-pregnant. I knew logically that something had to happen, but I couldn’t imagine that day. I was going to be the 40-year-old with a 10-year-old fetus just chilling away. (Speaking of, the cartoon below offered me a much-needed laugh on a day when I was absolutely desperate and upset about the fact that I was still pregnant.)
Anyway. As for the breastfeeding journey, we had a pretty successful evening feed! He latched on and sucked away, on and off, for what felt like a few minutes, which is much longer than he’s been doing in the past. I’m not actually sure he got much to eat, but progress is progress. The nurse said she estimated 10 mls, based on his residuals, which is something I don’t even know how to explain, on top of the fact that I don’t know how she got that number. But okay! I’ll take it!
I asked the doctor about bottle feeds during rounds this morning, and she said she’s not ready to start them just yet. We’ve only just started trying with the breastfeeding; additionally, she said the high flow somehow makes it difficult for him to coordinate the suck-swallow reflex, and so…um…yeah. It all made sense when she told me this morning 🙂 In any case, we’re going to keep working on breastfeeding only for a few more days before we consider switching to bottles.
This has gone on longer than I was planning. It’s time for bed! I’ve been very tired, but I know I face a new level of tired once we finally take him home. Which, yes, will eventually happen. One day at a time. Chug chug chug, puff puff puff.
P.S. If you’re wondering what’s going on with the hat in the photo up above, the front desk of the hospital has hats you can just…take, I guess? I’m assuming they’re made by volunteers. So I grabbed this one because it looks similar to a hat Dad has. That face is just priceless, no?
See that? That’s what I get for wearing a high-contrast shirt to visit Ambrose. He was more interested in the stripes than in gazing into Mom’s eyes!
It really is getting hard for me to remember how many days we’ve been here. Every day just sort of slides into the next. I pump at 6 a.m., eat some breakfast, go back to sleep until my 8:30 a.m. pumping, lounge around some, make my way over to the NICU, hold Ambrose, pump some more, eat lunch, pump some more, hold Ambrose some more, pump some more, eat dinner…and on and on.
Okay, that’s an ironic title to this blog post.
Because actually, things went pretty terribly when I tried to feed Ambrose today. There was a whole lot of thrashing and screaming, and not a lot of sucking. Very discouraging for me, seeing him all worked up and unable to do anything about it. He’s really going to have to work on his suck.
Today was much the same as the past few days: lots of cuddle shifts, some skin to skin. Today’s skin to skin was a bit distressing for me — it was right before one of Ambrose’s scheduled feeds, so of course he was going crazy smelling my milk and trying to find his source of food. Poor kid was banging his head up against my chest and screaming!
Another short update this evening, as everything is going great with Ambrose in general. He is still off all morphine and sedatives, and tomorrow is his last day of antibiotics. I don’t think I ever wrote about the experimental dose he got of the drug darbepoetin. It’s already FDA approved as a treatment for anemia in cancer patients, but is about to undergo trials in infants. Basically, the idea is that it protected his brain after the trauma he went through. (I think! Don’t quote me on that!) When he got it — two or three days after arriving here — things were very desperate, so it was a bit of a “why not?” situation. Anyway, he’ll get one more dose of that as well. And then we should be drug free!