Notes from Dad II

Yesterday, Tuesday the 14th, Amelia had a good day. She was completely off the bilirubin lights. They weened her down twice on her oxygen (which means her pH level and CO2 levels were stable), her body swelling was down, they took her off the dopamine that was helping her urinate, she had 3 feedings out of 4 that took and she'd gained another ounce (crazy to think we'd be so excited about an ounce, but we are). By the end of the day, I think she was tired... her urine output was again down - though the steroid they are giving her might be the cause, and her continued ventilation weening stalled, though that's to be expected. This morning, her numbers were stable, so yesterday's progress seems very real. (It's hard to believe it sometimes, as every hour seems to bring an ebb and flow of progress and regression.)

When we first got there, Amelia was fast asleep, her eyes (now disclosed from the ever present goggles) were tightly shut, her body comfortable and at ease. She seemed at peace for the first time in days. As we watched and had vistors - paternal grandma and friend and one of Xina's best friend's (who brought us dinner, gracias), Amelia opened her eyes now and then and looked around at the voices, and she grew a little irritated at times. (More than anything, preemies need a lot of sleep and quiet.) But she put up with us as well as Xina puts up with me.

The doctor is not concerned with her continued dependence on the oscillator at the moment; each baby develops differently at this point, and there is no average or "normal" time for Amelia to be off of it. (As my father's favorite plumber says, "Water seeks it's own level.) However, the longer it goes, the greater the chance for long term damage of the lungs, so we are always praying she gets off it ASAP. The low urine output (sans medicine) is still a curiosity, as the cause is as yet undetermined. No infection can be found in any of the blood or mucus samples, and as Xina said, the kidney development seems normal. So that's a waiting game now.

The worst thing, so far, was that before the Dr left, she did tell us that Amelia did have some bleeding in the cerebellum several days ago. As nice as she put it, she said it was slight, but there. The bleeding is much like a bruise, and in actuality, it seems to my unmedicinal mind, a slight stroke. The cerebellum is where motor skills are controlled. There is no guess as to what effect, short or long term, that the bleeding can have on Amelia, or any baby. Nor is there anyway to stop/prevent or help clear up the blood. It's something they will scan for every week, both watching as it disappears and watching for another one. Upon discharge, a more thorough MRI will be conducted and a sit down with a neurologist to talk about the long term care and things to watch for.

I was a little more stoic last night, than today. Xina was upset yesterday at the doctor's revelation, but the Dr had made me feel comfortable with the fact that there is plenty of hope to believe that her development now and after we get her home would continue as normal (for one of her birth issues). As I've been reading on the subject today, however, I must say that I'm not at all as comfortable with that belief - though I know I must keep it for sanity's sake going forward. I won't go into details here on what I've read, but it is verily scary to me. (Yes verily - which is different than very).

Not to depress anyone, but it is a blog to discuss Amelia and our own emotions, I'm verily depressed. (yes, verily, not very.) The more you read about it, the more upsetting many stories and revelations about what to expect, what the baby is feeling, and what long term issues you will likely deal with become.

But again, today, one of my friends in our New York office told me his sister-in-law was born at the same gestation period. Today, she works as a nurse in a NICU herself. There are so many positive stories like that, that it helps us through the bad days until we hit another good one.

But all in all, Tuesday was a good day... we'll post later about Wednesday.