Once Upon A Prayer

Tuesday, February 5, 2013


It is with a heart bursting with excitement that I get to tell you - 
Lily is getting "OUTTA HERE" tomorrow!!! 

Our morning started out with the nurse practitioner coming to tell us that during rounds this morning, the surgeons decided that Lily was ready to go home.  She is still not eating very well, and her weight is only 26 lbs...exactly what she weighed when we brought her home from China eight months ago.  The only difference is that she has grown 8 inches since then!  Dr. Jonas believes that once she gets home, Lily will eat.  We will hope and pray she does because if she continues to lose weight, Lily will need to come back to the hospital to have a G-tube placed into her stomach.  But we won't need that, right?

Lily without her ng tube!

What the surgeon came in to tell me later this morning is nothing short of miraculous!  Lily had an echocardiogram yesterday, and she still has fluid around her heart, as well as some fluid in her left lung.  The 6 mm blood clot is still lodged in her fenestration, which is where we would like it to stay since the alternative is not so good.  The surgeons said it was impossible, but Lily's fenestration is shunting a small amount of blood.  This is the reason why her pleural effusions have gone away, for the most part, and she has been able to keep those chest tubes removed.  

I love when God allows the impossible to happen!  

Some more amazing and shocking news was that Lily's Coumadin levels became therapeutic in only a few of days.  They decided to take her off of the Lovenox injections to thin her blood because even with the large quantity they were giving her, Lily's levels never became therapeutic.  Since Lily's clotting disorder is so severe, the hematologists thought it would take somewhere between 10-14 days for her Coumadin level to be within range.  We accepted the fact that we would be here at least another two weeks.  Imagine my shock when Lily was within range in only three days!!!

Lily will be closely monitored by the hematologist and cardiologist for the next several months.  Lily will need weekly blood draws in order to make sure her Coumadin levels stay therapeutic.  This might be a challenge at first as she eats better, and gains weight.  We will also be monitoring her oxygen saturation since she runs the risk that her fenestration might stop shunting blood, therefore causing her lungs to fill with fluid again.  Jacques and I have a lot of decisions to make about how to proceed from here.  Lily will eventually need more open heart surgeries, and possibly even a heart transplant.  We have a long road ahead of us, with a lot of difficult decisions to make.  

But tomorrow...we will go home.  
And we will enjoy being a family of 6 again. 

Praise God from whom all blessings flow!


  1. Our God is an Awesome God!!! What a blessing. You guys are an amazing family!!

  2. YAY!! So happy for you all! Thank you God for answering all the prayers for Lily!

  3. Great news! Continued prayers for you all!

    "But Jesus beheld them, and said unto them, "With men this is impossible, but with God all things are possible." Matt. 19:26

  4. Praise the Lord! We will keep praying for all of you including your newest blessing in your belly!

  5. Yay!!!!! Thank you God for hearing all of our prayers for Lily:))

  6. It is amazing that, despite medical plans, God made things happen in Lily's body exactly as she needed them to happen!! Such proof that God has a plan! Rejoicing with you, Emily and Jacques. I can't even imagine the relief and joy you will feel to be HOME again and reunited with your family! Is there enough Kleenex in the world??? These are such great lessons in embracing each moment. I know you will:) Enjoy them...get some rest...and don't forget to keep us all posted! Love you!!!

  7. Wooo hooo! SO happy to hear that! I cannot even begin to imagine how exhausting all of this has been for you all. I was only in the hospital with Zachary for 4 nights and I was so ready to be in my own bed. I bet you will sleep well tonight at home---in your bed, not the hospital! Praying that things will continue to go well! I am checking on you every day!

  8. We have an awesome God, he is our healer! I am super excited for your family!

  9. So so so thrilled for you all... Trusting God with all the details and the healing still to come!!

  10. Joy, joy, joy!!! Bienvenue chez vous!

  11. Praise the Lord! God is good!

  12. Praising God with y'all! Continued prayers!!!

  13. Praise God!! He is definitely in the miracle business!! :) We've been praying for Lily for a while and are so amazed at this dramatic turn for the good! What a wonderful gift!

    Praying for you and Jacques as you make all these decisions for Lily's future. Praying that Lily will continue to be the recipient of God's miracles and that her heart will heal.