Day 51

So today was a good day for Lucy. Her CO2 this morning was 34, and she didn’t have a CBC this morning, so I’m not sure about her platelets. She weighed exactly the same as she did yesterday, which is not that surprising because apparently she had a huge poop (and another tonight). I really appreciate that, though, because it means her bowels are working which is a good way to avoid NEC. Her feed remained the same today, 4 mL/hour, because she was getting blood and they didn’t want to overwhelm her. So far she’s done fine getting blood through the PICC line. So her breath rate on the vent was reduced to 33 again, and as of tonight her CO2 was 46, still within normal range.

Note: David objects to my frequent discussions of Lucy’s poo. Hopefully you’re not offended.

Now, though, Dr. P thinks she’s getting enough milk that he’s planning to remove her PICC line tonight and put in a smaller catheter instead. The idea is that it will (hopefully) help to clear her yeast infection, but I have mixed feelings about it. She’ll be getting all milk and no TPN (I think? Maybe? I could be wrong there), which he said is enough at this point to sustain her, although possibly not enough for her to keep growing as quickly. I guess it’s a tradeoff, but I really would like her to be getting all the calories she can, so hopefully he will be able to continue to increase her milk quickly. I think he’s planning another milk increase for tomorrow, so that’s good. I’m glad we happened to be there when he was considering this, because otherwise I would have gotten a call in the middle of the night saying “I’m doing this, and here’s why, is that okay?” I always say yes, because he’s given me no indication that he would do anything of which I wouldn’t approve, but he’s kind of hard to pin down. The neonatologists are like ninjas sometimes, they slip out when you’re not looking if you’re not careful. I’m really very confident in their treatment plans, though, and I’m pleased that Dr. P has been conferring with other doctors around the country about her treatment.

We had a couple of good visits with Lucy today, although she was giving me a heart attack earlier. She was going CRAZY, flailing her arms and legs like a madwoman. I was actually having a hard time keeping her arms down. How is it possible to have trouble holding down a 2.5 lb. baby?? Then they put her on her tummy, claiming it would calm her down, and instead she lifted her whole torso off the bed and slammed her face straight down. She could do that all she wanted if not for the ET tube, which is why I was so nervous. Her nurse had to call in backup to help move her. She wasn’t distressed or anything, and her saturation stayed pretty good that whole time, but she was just super energetic. They say that’s a good sign, but I wish she’d save some of that energy for growing, instead. When we saw her again tonight she was fast asleep and power-sucking her pacifier. She sucked that thing for probably an hour straight before waking up and starting to flail around again. Her nurse says when they start doing stuff like trying to pull their tubes out, that means they’re almost ready to come off the ventilator. In that case, she was ready almost as soon as she was born, but I can still be hopeful.

The Reglan is working pretty well and I haven’t had any terrible side effects. I’m definitely producing more milk now, but I’m afraid it will just be depressing when I have to stop taking it and the effects wear off. I figure any additional milk helps, though, so it will have been worth it. Also, I went to the opthalmologist today because I’ve been having weird vision problems since Lucy was born. I was actually a little worried that I might have a brain tumor, or something bizarre like that, because I could still see the strange effects with my eyes closed. Fortunately, my eyes are perfectly healthy, and I’ve been diagnosed with ocular migraines, which aren’t as bad as they sound. The doctor started by saying they could be caused by too much caffeine, cheese, chocolate, citrus, or food preservatives, none of which should be a problem for me. I said so, and he said “oh, they can also be brought on by stress and lack of sleep.” Way to bury the lead, buddy. So I think I’ve found the culprit, and they should go away when I’m less stressed . . . so, like, 18 years or so?

Anyway, today was a good day, and even Dr. P, always slightly pessimistic, said she’s had several good days now. When I asked him if she’d be okay long enough for us to go home tomorrow night, he said “oh yes, yes, she’s fine.” That’s about as positive as I’ve ever heard him, so that made me pretty comfortable. I still hate to leave her (every single time), but since we have to take care of things back home, I’m glad to know she’s doing well.

Lucy is such a blessing in our lives. I don’t know that I particularly believed in miracles before she was born, but if anything is a miracle, she is. I spent a lot of time after she was born wishing that she hadn’t been born yet, but I find it harder and harder to think that. Because whatever else comes out of this experience, we got Lucy, and Lucy is amazing. We are so incredibly proud of her, and we love her more and more with each passing minute.

Here she is holding onto my hand with both of hers:

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Little toes:

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Little fingers:

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And here she is suck suck sucking on her pacifier. She did that for an hour straight.