Once Upon A Prayer

Saturday, July 14, 2012

Day 2 Afternoon Update

This morning, the cardiologists decided to start a medication to regulate Lily's heart rhythms.  It seemed to work for awhile, but then her rhythms started doing wacky things again.  Lily is still paralyzed, and they are currently cooling her body temperature to 93.2F since her heart rhythms and blood pressure prefer a cool temperature.  

Her surgeon came to talk to us, and he suspects that either she has a blood clot covering her fenestration (a 4mm hole he created on purpose to relieve pressure) or that the fenestration has closed itself.  Lily is on Heparin, which is a blood thinner, in order to break up the clot if one does in fact exist.  The position of Lily's unique heart has made it impossible for the echocardiogram to "see" the fenestration through imaging.  If her stats continue to decline, Lily will need to be taken back to surgery to get a better look at what is going on.  The surgeon is hoping we do not have to go this route since her little body is already struggling, and another procedure would be very difficult on her right now.

In the midst of all of this, I am reminded of the 10 long months that Jacques and I literally "fought" to bring home our daughter.  I remember lying in bed awake many nights wishing, hoping, dreaming that I could be with my sweet Lily girl.  

And here we are, by her side.  
There is nowhere in the world I would rather be right now
than hand in hand with my precious baby girl.

Papa with his Princess #4

I love you Lily - all the way to China and back!

Kisses from Papa <3

The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
  When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
I will reward them with a long life
and give them my salvation.”
Psalm 91 14-16


  1. Many many prayers! It hurts my heart to see your precious daughter struggling the way she is. So thankful for our Father and His presence every moment of our lives. Praying you feel Him near and that He heals sweet Lily!

  2. Dear Jacques and Emily, I have been praying for your family since I first read the exciting news of your new daughters and I am inspired by your love and devotion to both God and your girls. Please know that I am praying for God's love and strength and courage to surround all of you and all those who are helping during this struggle. Karen S.

  3. Emily we had issues unconteolled by any intervention In the beginning ( middle, end, and still today...) as well and as much as I didn't want them to take her in for a cath to get a better look, it really is the best thing. Had they taken one more peek through a cath before we finally left the hospital they would have also seen that her coronary artery was blocked and we would have known she had heart failure still rather than finding out months later. I get the feeling Lily is in superd hands and I give thanks that the one who made her and loves her more than anyone is working things out at this very moment and all the while she is surrounded by the greats mommy and papa ever!!!! Hugs my friend!!!

  4. Your daughter will be in my thoughts and prayers. My daughter Sophia Jane is an asd/vsd child from Beijing. Much love from Michigan :)

  5. Emily - praying for all of you! I hope you are able to see little Lily open her eyes and smile her beautiful smile again very, very soon!


  6. Riddle First Baptist Church in Riddle, Oregon will be praying for your daughter and family.

  7. Your story and your beautiful girls have touched me deeply. My own China-born daughters are teenagers now, but I remember every bit of our Gotcha trips and all the love since. What you are doing is amazing - your positive spirit will surely bring great happiness to the world. I am praying for Lily's heart and Mackenzie's ears, for Dryden and Soleil for sharing their Mom and Dad with two new sisters with great needs - and for you and Jacques for being such amazing parents. Thank you so much for sharing here and for being who you are.

  8. Praying and holding your faith up - you are an amazing family!

  9. Praying hard for your angel in Raleigh!
    Our sweet Nora Niu had major heart surgery (Fontan) at Duke in March. It is so very hard to watch them lying there with all of those tubes and machines! But, like you said, you AND her are in the right place. She has her Mama to pray and rally others to pray, and to hold her hand and kiss her.
    Please keep us updated. I found out about you through my facebook friend Mary Ann.
    (((hugs))) and prayers!
    PS Nora is playing tag as I type :)

  10. Mary Jane, rather :-0
    Mommy brain ;)