Once Upon A Prayer

Monday, July 30, 2012

Day 18 - Always Wanting More

Let's start off with the good news!

After Lily was on the two "ouchy" IV antibiotics for 48 hours her white blood cell count came back normal, and her fever disappeared.  Yahoo!  The infection is gone.  Lily has also been able to get up and out of bed quite a bit over the past few days, which has kept Mommy very busy.  

Happy...but busy!

Lily was doing so well, that the rumor on the floor was that if she stayed fever free for 12 hours , and stayed off oxygen, she would be able to go home on Sunday.  I thought for sure this was it.  We were finally going home.

Not so fast...

A few hours after Lily fell asleep on Saturday night, her oxygen saturation dropped dangerously low and stayed there.  The nurse and I both sat by her bedside watching the monitor, knowing full well that if she put the oxygen back on Lily, we would not be going home the next morning.  Somewhere around 30 minutes later, the nurse looked at me and said, "I am so sorry.  Lily is not coming out of this desaturation, she needs oxygen".

Sunday morning's x-ray showed fluid in Lily's left lung.  The surgeons decided to watch Lily closely over the next 24 hours to see what would happen.  The next 12 hours showed Lily's heart rate to be very high, and her oxygen saturation to dip quite low with hardly any activity.  Just like the night before, a few hours after Lily fell asleep, her oxygen saturation inched its way down until it hit 54 and stayed there.  The nurse and I propped Lily up on some pillows, and raised her bed quite a bit.  Lily was able to bring up her saturation's on her own to 70 without any oxygen.  Without her being on a monitor, Jacques and I would never have known she needed to be propped and moved in order to breathe.  That really scares me.

Over this past week, I have found myself always wanting more.  We adopted Lily knowing that her life on earth might be short.  The Cardiologists and surgeon gave us hope, but never a guarantee.  We also knew this this third open heart surgery would not "fix" Lily's heart.  This surgery might buy us some time, but then again, it might not.  When I prayed to God for his grace and favor to make Lily our daughter, I promised him that I would love this little girl with all that I had in me even when it hurt.  I would cherish every moment we spent together, and I would make sure she understood that this life on earth is not the end.  

As I watch my precious baby girl sleeping in the bed next to me I am reminded that just eleven weeks ago, Lily was a little orphan girl that the nannies called, "Yar".  She had no hope, no chance at healing, and no future.

Tonight, Lily is our daughter...
a sister...
and an inspiration to everyone she meets.

We are troubled on every side, yet not distressed; 
we are perplexed, but not in despair; 
2 Corinthians 4:8


  1. Your faith is amazing, to God be the glory for your obedience. I will continue to pray over you, Lily and your family.

  2. We are always pointed to Jesus in your posts. Jon & I have hope to travel late October to China to adopt a little heart boy. His heart defects aren't quite as severe as Miss Lily...we are watching and learning from you. We are praying as well. Thank you for your courage to follow Jesus.
    Sarah Risley

  3. I continue to pray for your family and Miss Lily. Her life is so much fuller because of the love of her family and experiencing God's love through you. We never know how much time we have with our babies, bio or adopted. May God give you the peace and wreckless abandon to love Lily with every ounce in you for every moment she has here on earth. Standing in prayer for her healing.

  4. I would like to send you something. My email is chevychic62@yahoo.com if you would email me your address. It may be really helpful when Lily goes home. Continue to be amazed and inspired by you. And praying for you.