Lucy, Day 26

Lucy is doing well today. It’s weird. Not much is happening really, so we feel like we’re just kind of waiting around to see what will happen. Definitely preferable to things going wrong, but of course I wish she was just steadily getting better. No change is good, though. Her doctors keep telling us that they’re just trying to give her time to grow on her own.

Her doctor this morning was his usual cheerful self. I’m always nervous before talking to the doctors, because they have a policy of brutal honesty. I appreciate that they are honest, obviously, and I wouldn’t want them to sugarcoat things, but they can seem pretty negative sometimes in their unwillingness to predict positive outcomes. Anyway, her doctor is not too worried about her infection. It’s a staph infection that is very responsive to antibiotics, and he thinks she’s already looking better and seeming less sensitive. (I agree – she hasn’t needed any sedation or pain medicine for about 3 days, the longest she’s gone since she was born.) Her breathing, although not really improving that much at the moment, is at least stable on low oxygen. She’s extremely active, pink, and winning over all her nurses. Unfortunately the doctor decided to suspend her feedings temporarily, although her bowels seem to be working well, because he’s noticed an unchanging section of bowel on her x-rays. He said it doesn’t look like NEC (necrotizing enterocolitis, in case you forgot, our next big worry), and he thinks it’s just from her infection, but he’s just being cautious. I’m sad my baby doesn’t get her milk though. He also thinks, in hindsight, that some of what he was seeing as lung damage was probably a little bit of pneumonia, also from this infection, and that once it clears up she’ll probably start to improve faster. She gained a little weight too, up to 680 grams. It’s not much, but it’s good that she’s gaining at all so quickly after the steroids.

We’re settling into life here, and it’s weird to realize we’ve been doing this for almost a month already. It’s strange to think that we might be almost 1/3 of the way through this, because it feels like it will never end. It feels like this is our life now, forever. Intellectually I know (hope) that we will be taking her home in a couple/few months, but I can’t imagine life any other way than it is now. People keep telling me that I’m so on top of things, but it’s not because of my superior organizational skills or anything. It’s all I can do. Learning everything I can about what’s happening to my baby and documenting it is the only way I can think of to contribute to her care. It’s like I’m studying for a big test, like I can affect her outcome by knowing everything. Of course I can’t, and of course I don’t know everything, but it at least gives me the illusion that I’m doing something to help her. Fortunately, as I get to know her doctors, nurses, and the NICU at Mercy SW, I feel more and more confident that she’s in the best possible hands, and that they’re giving her the best care they can. We’re really so so fortunate.

Okay, pictures. These are more pictures of pictures that her nurse took over the last few days. In this one I think she looks kind of like an alien because her irises take up so much space in her eyes. But I still like it because you can kind of see how long her eyelashes are. She has a little cut on her nose that looks much worse in these pictures than it actually is.


And here’s her in her classic pose. You can see her nurse has captioned it. As I said, she’s getting a bit of a reputation (she had the pulse-ox monitor cover off her foot three times while we were there tonight).


And this is my favorite. I know she’s not really smiling, but it’s super cute anyway.