Day 12: A frightening visit, but she's still fighting

Tough visit this morning. Excruciating. I'll preface this by saying that Lily is still fighting as of this writing.

It was around 11am, Sara and I were sitting in the NICU, and Lily's nurse went in for care- repositioning and suctioning out Lily's mouth and throat (which usually helps raise her blood oxygen levels). All of the sudden, Lily began de-stating. Her bloody oxygen fell from 90 to 80 in a second or two. Then 75..... 70. Sara and I started getting nervous. She always de-stats a bit during care, but it dips generally at most to 70 or 65 and then starts creeping back up.

We saw 70, then 65, 60, and 55... Red lights start flashing, alarms go off, her nurse starts tapping her chest and legs to try to 'jumpstart' her out of it. Her nurse looks very worried, murmuring "come on baby" under her breath.

Nothing. Blood oxygen still falling rapidly. 50.... 45..... I look at Lily's pulse, it's falling too now. Usually 160/170, I look up and see 110 on the screen. 100, 90... All I can think pf is the doc's telling us a few days ago that de-stats aren't bad unless pulse drops along with blood oxygen rapidly.

Blood oxygen still falling... 40.... 35... 30.... They turn oxygen in the ventilator up to 100%. If that doesn't work, nothing will.

Sara and I are by now completely panick stricken, we're literally pulling our hair out, face buried in hands. We had to leave the room. Couldn't take it. We both look back and feel horrible about it- our child's vitals are crashing, and we left the room. But we're only human. We couldn't take it. Didn't have it in us.

We walk around the corner, both praying and terrified. We walk in separate directions down the hallway. There's no comforting one another a this point. We pace in the hallway for what seemed like an eternity, but must have been 30 seconds. I looked around the corner at Lily's vitals screen and saw a blood oxygen level of 17, two nurses and a respiratory technician were huddled around Lily. Sara asked me how much her blood oxygen was. I told her.

We thought our baby was dying. This was it.

More praying. More terror. Started walking back in... looked at the screen and saw 77... she fought back. She lived!!! Pulse was rising, so was bloody oxygen. We walked back in visibly shaken. The nurse was apologizing to us, I have no idea why. It's not like lily de-stat'ing was her fault. All I know is that our Lily made it. She's still fighting. The nurse told us they had to manually ventilate - resuscitate - her to bring her out of it.

That was the worst de-stat'ing episode yet. They serve as a painful reminder of how fragile Lily's life is. By the grace of God, she's fighting hard for it... and still holding the line.

As far as other updates- they are holding off on further chest x-rays for the time being. If her vitals drop and stay low, they'll give her another one. Since they're already doing everything they can to fight the pneumatocele, the risks of more x-rays (radiation) outweighs the benefits of checking on it's size more frequently.

Outside of that scary episode, Lily's vitals have been relatively good. Eletryolyetes are good, blood gas tests ok, and she's being bumped up to 3.5 ml/hr on her feeding tube! If she makes it to a full feed (5ml/hr) by tuesday, the docs won't have to insert a PIC line, which basically replaces her umbilical 'central line' IV, now used for electrolytes. A pic line is a catheter IV that feeds into the heart area. 99% of preemies need one- maybe lily won't, since she's been feeding so well.

I'm visiting at 8pm. More updates (if any) later. No news is good news! Regardless, I'll post up some pictures of her later. The CPAP nasal ventilator could be a ways off, and sara and I can't wait to share pictures of our beautiful little girl with you all!

Update: They have to give Lily a break on feeding for a few hours, since she had some gaseous buildup in her stomach that caused her to throw up a little bit. They'll hold off for four or five hours and resume at 2ml/hr at that point. In positives:

1. Docs didn't see the pneumatocele in the x-ray taken at 9:30pm! The air pocket is either gone or deflated and didn't come up on the xray- either way, it's good news!

2. Electrolyte levels are good.

3. Taking the umbilical cord IV out and inserting a peripheral IV in Lily's foot didn't cause her to crash, or de-stat below 70% oxygen saturation. Her ventilator was set at 35% for most of the day, though docs do have to raise it to 70% for care.

4. Lily is on day 12, almost 13, of life, and is still fighting!