Day 49 & 50: This is now her fight.

We baptized Lily this morning.

The last two days have been really hard for her. Sara and I are again very scared for our little girl. We have had a major setback, back to day one, the doctor said. She has pneumonia and yesterday her lungs filled with fluid and collapsed, she gained 110 grams. She was switched back to the oscillator vent that she was on during the first few days of life. She has required 100% oxygen since last night.  An inflammation indicator called the c-reactive protein jumped from a 1.7 to an 11, indicating possible infection... The idea being that most infections show inflammation, but not all inflammation is caused by infection... could be stress related.

We went to rounds this morning and the doctor told us the cold, hard truth. Lily's distress level, need for life support, and chances of survival are "back to day 1". Back to 50/50, back to hour-to-hour.

Here are a few things the doctor told us, word for word:

- "Her chances are 50/50, but I'm hopeful"
- "I'm betting it's not an infection, but it is definitely something."
- "There is a chance that she might die."
- "Right now she is the baby that my team is most worried about."*
- "She is scaring us, too."
- "You need to stay positive."
- "There is nothing more that we can do for her, other than provide support."
- "This is now her fight."
- "See how she's moving, that's good. The most extremely sick babies don't move."

*There are 3 teams for 50-60 babies at the nicu. 2 of the teams, red and green, cover the 12-16 most critically ill babies. We're with the green team.

It is very frightening, terrifying and heart breaking to think that Lily is again faced with such difficult odds. It feels very cruel to have put 50 days behind us, to see her fight so hard for 7 weeks, only to have such a major setback and to again face such uncertainty.

We are praying a lot, and know that hundreds and hundreds of people are praying for her too. She will pull through, I know it - she has to. In two or three months we'll all be at home, laughing and watching Addie play with Lily. I know it. It has to be true.

Here are a few positives:
1. Lily is still tolerating her feeds, and is still digesting well. Nevermind. Just called nicu and she vomited, so they're stopping her feeds for a while. It makes sense though - I don't feel like eating when I'm sick, either. Doc said not to get too worried if this happens.
2. Lily's blood gas tests, which are taken once every four hours now, are getting a little better. Not as much as docs would like to see, but at least they're not getting worse.
3. Although she's on 100% oxygen, around 12pm they were able to lower her pressures* one (of about 30) notches.
4. She is waking and moving around a bit. Yesterday she was very lethargic and didn't wake up at all.
5. Lily is still alive, and still fighting.

Even though today's news is a big step back (about 50 of them), that doesn't mean there won't be better days ahead of us. Fortunately her body is bigger. Who knows, maybe next week will be 20 steps forward. Right now, we could take just one step - any steps - anything but another step back.

*Two types of measurements on ventilators. Oxygen saturation (which is at 100%, can't go any higher) and pressures, which is the thrust with which air is pushed into lungs. Higher pressures means more inflation is required. When she was on the CPAP, pressure was at about 5.0 -- pressures are now about 30. 

Thank you all for the prayers and support. Please keep the positive energy and prayers coming for Lily - I hate that I have to keep saying this... but she needs them, again, more than ever. We are staying positive - and full to the brim with HOPE.