They warned us early that this process would be a roller coaster. They were right. Draining, not draining. Better, worse. No surgery, surgery. No tube, two tubes. Stage 1, stage 3. No transfusion, transfusion. Black spots are good, black spots are bad.
Thursday was especially tough. Day 12 in the hospital and Jen started to break. I think seeing her struggle hurt me more than anything had so far. Her anguish became clear, overwhelming. She had hid it so well for so long. She is the sweetest mother to Lili, she has spent every waking moment with her. She has held her hand through every challenged she has faced. I feared I would discover her threshold during this process. I hoped I wouldn’t. Strength. She had held us together. Could she hold her breath forever?
Thursday.
The I.D. specialist came in earlier than usual. She had bad news. Lili’s inflammatory markers (CRP and White count) were going up, and they didn’t understand why. They should be gone by now. They were higher than most kids ever go, and we were on day 12 of heavy drugs. Were they fighting the right bug? Were they using the right antibiotics? What was happening! Reality. Lili’s lung was dying. The necrotic tissue in her lung was becoming clearly visible on the x-rays. They assured us it would heal in time. But Thursday (Thursday will forever be different to me) they started to discuss the possibility of having to remove part of her lung. Darkness. The next 24 hours would decide. Waiting.
Faith. Doubt. Hope. Fear.
So many blessings. So many prayers. So many people have expressed their genuine concern for Lili. It brought us peace on a rather comfortless night. Thank you for your prayers. Thank you for your emails. Thank you for your texts. Thank you for your blog comments. They have meant so much to us.
Friday.
Early. Still dark. Lab results are back. CRP is coming down. White count too. She is healing. The pneumonia is retreating. Death in the lung has stopped. Healing is taking over. We are so hopeful now. We are smiling more now. It’s amazing how grateful we are for the information carried in her blood. Never really thought about it before. Talk of going home, finally. Good news, two days in a row now. Thank you, thank you.
She is getting better.
14 comments:
:)
Good news! love it.
i am elated to hear that lili is healing!! she has been through so much...all of you have...
time to heal. everything will be ok.
thanks for the update.
thinking and praying for all of you.
love you! =)
:) Yay...What a little trooper you have...and what great parents too. I'm so glad to hear that she is getting better.
Such Great News! Thanks for the updates, we'll keep praying for you!
It makes us SO happy to hear some good news! Keep it up Lili!
I'm so sorry about this trial you guys are going through you. I have you guys in my thoughts and prayers and I hope Lili fully recovers soon.
YAY! We have been waiting for some good news. That is so great!
I thought of you guys today at church. They passed out a sign-up for a blood drive...(one that I would usually find a reason why I couldn't donate blood) but after reading your post on her blood transfusion, I couldn't pass it up. She sure has made an impact on a lot of people (including me).
Can't wait to hear more good news!!!
Love you guys.
I found out at church today that my primary kids and preschool kids have been praying for Lili all week since I spoke about her last week. Parents were coming up and asking how she is doing...I was almost crying...kids are so faithful and they truly love her even without knowing her. She is one special girl. And you are definitely special parents. I'm so glad to hear that things are looking up.
At church on Sunday, this lady I worked with talked about how close our little children are with Heavenly Father. I thought about that and thought about Lili. I know he's kept her close to Him and helped her be brave.
What wonderful parents you are.
So thrilled she is doing so much better.
Thanks Kylan for the updates.
so glad to hear some good news! we are constantly thinking of you guys and praying for you. we hope lili continues to progress and that you guys get to go home soon! lili is lucky to have you both as parents, you are amazing:) sending our love!
I'm with you Ash. That little girl and her little family have definitely made me more charitable, more kind, more humble, more prayerful.
Less rote and more pleading and thanking.
More thoughtful and less judgemental.
Less like the world and more like Christ.
Thanks lils.
so glad everything is getting better! you are officially in our prayers now too. there's no greater power than His. you guys are amazing and it sounds like lili is so tough. keep hanging in there.
Jen and kylan i haven't been on here forever and just was looking at some friends blogs and ran onto what you have been going through. my heart goes out to you it is beyond difficult to even see a child get a shot. i am aching that you have had to go through this but amazed at the faith and strength you have shown. i hope that all is improving and it seems like it is and i hope that lili makes a full recovery from her surgery and entire ordeal. our prayers and heart go out to you and your beautiful family. lots of love from the bayles'
i'm so glad to hear this as well! we're still praying!
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