Two steps forward, one step back

Big picture still good, little picture… is a little more complicated. Last week we felt like we were almost there, light at the end of the tunnel — this week, more of a mixed bag. All tied to his one real issue — he’s just not quite ready yet.

He was off all oxygen support, did really well for a couple of days, but then needed it back. It was too much work, right now, to breathe fully on his own — the effort made him too tired to take bottles, which he’d been starting to do, and too tired to make real progress on breastfeeding. Part of it is also that he’s been consistently anemic — 90%+ of all babies born his size need transfusions in the early days, and he’s had three. He’s on the borderline right now for a fourth, but they’re trying to hold off because they want to push his body to start making all of the new blood cells he needs, and they say he won’t start doing that if they keep transfusing.

More blood — whether by transfusion or made on his own — would increase his energy, for the feeds and for his lungs. It’ll get him back off the oxygen for good and will get him taking the bottle more and more. He’ll get there — the doctors say he’s doing really well, it just takes time — but the day to day is frustrating, a day with progress, then a day without, a day with weight gain, and then a day when he’s using too much energy to breathe and feed and he doesn’t grow. He’s 4 lbs. 12 oz. as of last night. The trends are all moving in the right direction. We’re confident he’ll get there, and whether he’s home in five days, in fifteen, in twenty-five, we know it doesn’t make a difference in the long run — it is just hard.

He is alert, more and more. Making eye contact, looking around. He is slowly becoming more and more of a baby instead of a tiny animal. His eye exams have been good. His blood work, aside from the anemia, has been good. They’re not doing head ultrasounds anymore, because he’s been fine. So there is lots and lots of good news. We look around the NICU and feel lucky. But, still, we call the nurse last thing at night for an update before we go to sleep and we can’t help but be nervous as she starts to talk — is he doing better than he was a few hours earlier, is he doing worse, did anything happen, did anything change —

It is hard to be on high alert all the time. I realized this week how much it fills my cognitive capacity, how little space I have to be worried about anything else. We had a pipe freeze in our bathroom earlier in the week, and then discovered a leak in the basement — and I couldn’t keep myself from panicking. (The panic was aided by the first professional who came to take a look, and told us our frozen pipe must have burst, water is filling up our walls, we are going to have to rip apart our bathroom, and our house is going to get moldy and fall down. The next day, professional #2 found that the source of the leak was actually a humidifier attached to the heating system, he disconnected it, and everything is fine. But for 18 hours in between, it was really too much.)

Handling a baby in the NICU plus… anything… is a lot. Only a little longer, I know. I hope. Our baby will be two months old next Saturday. Hopefully five pounds by then, hopefully home soon, healthy, stable, manageable. All signs are good. We’re just not there yet.