Week 2, Day 1 - Happy July Fourth! *updated*

Quick update before we head out to the NICU: Lily had another good night! She's digesting well, and tolerating the new ventilator at 25% oxygen. They might "de-trache" Lily today or tomorrow and put her on the CPaP nasal ventilator. Once she's got the tubes out of her mouth- we'll post pictures of our little fighter!

Can't believe it's July 4th. Happy Birthday, America! From me, Sara, Addie and Lily- wishing you a happy and safe Independence Day!

UPDATE 6pm
At this morning's visit, lily started de-stat'ing rapidly, out of nowhere. Her blood oxygen content dropped from 93 to 69 in about a minute. Terrifying.

Her nurse jumped into action and adjusted her, slowly the blood oxygen indicator started to creep back up through the 70s and 80s. Then again, all of the sudden, a drop to low 70s. After another round or two of de-stat'ing, Lily's nurse ended up turning up her ventilator oxygen content to 45%, up from about 30% previously. They go up in 5-% increments, so I suppose she de-stat'ed three times. Once the blood oxygen falls below 75, red lights blink, alarms sound, and it flashes "DE-STAT" on her vitals monitor. Not a pleasant experience... very nail-biting.

Every time an alarm sounds in the NICU, I jump out of my seat. Sometimes it's not Lily, sometimes it is. (right now, I'm at the nicu and she's cruising steadily at 93/94%). In the picture to the right - top is heartbeats per minute, and middle and blue numbers are measures of blood oxygen. The blue - blood oxygen percentage - is the most important number, generally speaking.

When the alarms aren't Lily, I breathe a sigh of relief- but then I look over. That's someone else's baby de-stat'ing. The relief immediately turns into guilt... how could I be relieved that someone else's baby is de-stat'ing? It's a real mix of emotions, I suppose.

And that's what it's like sitting in the NICU. I can't tell you what it's like to have a child on life support- that's not possible to describe. But I can tell you what it's like to physically sit here, staring at your baby's vitals screen- it's periods of boredom interspersed with moments of terror. Trying not to mind the small up/down ticks in blood oxygen content, but belaboring any move of over five notches downwards. "don't watch the screens" the nurses tell us.

Right. Don't watch the screens. A joke?

After the scary episode this morning, Lily's nurse got her blood oxygen stabilized in the high 80s/low 90s range for much of the afternoon. After a little swimming and cookout-ing, I came back to the nicu to check on Lily at around 6pm. She's hanging in there. Sara and I ate gradually becoming more hopeful. We aren't quite as sad anymore- let me correct that- we're still sad, but we're no longer overwhelmed by despair and emptiness. We have hope, positivity, and we're staying strong. Sara's incision is mending well, and every day we see our Lily put a little more chub on her bones!

Right now she weighs 820 grams- 1lb, 14ounces. 20 grams up from her birthweight, and 2 pounds is just around the corner! She sure is a fighter. I love her so much- I admire her strength. If this kid makes it (I'm confident she will!) and if she's anything like her big sister.... I'm in trouble!!