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:
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.
My thoughts and prayers are with you and your family. My positive energy is being sent to you Lily. Keep fighting little one, you can do this!!
ReplyDeleteDear Lord, Please carry Lily through this crisis - she has loving family & friends waiting for her to survive this crisis - In the name of your son Jesus - Amen
ReplyDeleteThe fact that Lily has survived this long is a testament to her strength. How lucky she is to have such wonderful parents to love her, care for her and hope for her. Our family will be praying for your family.
ReplyDeleteMay god lay his healing hands upon you little angel and comfort your family in your hour of need. We ask this in Jesus' name. Amen.
ReplyDeleteYou're all in my prayers especailly Lily. Stay strong and positive, she is a fighter and will pull through this. Hope is a good thing to have.
ReplyDeleteMy thoughts and prayers are with you. Lily sounds like a fighter, and so do the both of you. She is beautiful and will be in my prayers tonight
ReplyDeletePraying for GOD to touch Lily. Praying for you to feel his loving arms wrapped tightly around you.
ReplyDelete~Janis Fletcher
Our thoughts and prayers are with you Lily & your family! Stay strong!!
ReplyDelete~The Kennedys
All of us at Sara's work are thinking about you guys right now and sending positive wishes. Lily sounds like a fighter, she sounds like she's in good hands.
ReplyDeleteyou have alot of prayers heading your way! Lily has touched so many people in her 50 days of life. She is a fighter...and she has 2 incredibly strong parents that are fighting just as hard to see her through this long ordeal. She has your strength and the prayers of over 25,000+ people to help her through the weak moments. *hugs to you all*
ReplyDeleteDawn
Will keep all of you in my prayers. Keep fighting Lily!!!
ReplyDeleteI have followed your story through Eileen, I just want to let you know I was traveling in England and Austria recently. Candles were lit and prayers said in Cathedrals in Chester and Vienna. You remain in my prayers.
ReplyDeleteA friend
My thought;s and Prayer's are with you. Hope all goes well from now on......
ReplyDeleteThank you all for the prayers and support, they are deeply appreciated. Some day this is all going to make an astonishing story of hope... For now, we just can't wait for it to some day be a memory!
ReplyDelete