Once Upon A Prayer

Tuesday, March 18, 2014

Heart Transplant

As of Tuesday, March 18th, 2014 
Lily Grace has officially been
listed for a new heart. 

This is a decision that Jacques and I did not take lightly, especially after being turned down by three transplant centers already.  We have been warned that Lily's case is very complex, and nothing will be straightforward or easy to predict.  If Lily does receives a heart, she will be transplanted to her single left lung.  Lily's clotting disorder and multiple blood clots in her body increase the likelihood that her recovery may be very difficult or that she may not even survive.  It is so hard to not get caught up in statistics or the numerous "what ifs" as we embark upon this new journey. 

Jacques and I are also painfully aware of the fact that in order for Lily to get a new heart, another child must die.  Just ten months ago, we sat together in a hospital room holding our deceased daughter, Addy Hope, in our arms.  It takes but only a simple thought for those horrible emotions to flood back into my mind.  Our prayers are already focused on this precious child's brave parents who will make the decision to turn a tragedy into something beautiful...life.

Lily has been so very fragile over this past year and a half.  Since October her Protein Losing Enteropathy, and the steroids used to treat it, have been killing her.  Medically speaking, there is nothing left for them to do to help Lily.  If she continues down the path she is currently on, the PLE will eventually cause her lungs and pleural cavity to fill with fluid and she will drown to death.  When the Heart Transplant Team came to ask for our permission last Wednesday to bring Lily before the selection committee again, we said yes. 

We are terrified.  We are anxious.  We are hopeful.  
When presented with our two options for Lily, 
Jacques and I chose the option 
that offered hope.  

If we have learned anything in our lives so far,
it is that you must always choose hope.  
Hope always wins.

May the God of hope 
fill you with all joy and peace in believing, 
so that by the power of the Holy Spirit 
you may abound in hope.
Romans 15:13


  1. I will continue to pray for you as you are on this new journey! God has given you (and us) this precious child, Lilly and she is such a blessing to all who know her. I pray that God will work His miracle as I know Lilly has a tremendous heart for her Lord!

  2. May the God of all HOPE bring the miracle we long for... Let it be Lord! Be glorified through the lives of this precious family and the little girl you have blessed them with! Hugs Little Sister! How I love you! Lori

  3. Oh gosh...I rarely comment but I pray for Lily every morning and at weekly services. I thank G-d for this hope you've been offered, and pray that it may come to beautiful fulfillment. She is a beautiful child whom I first saw on an advocacy page several years ago, and your blog is an inspiration. Thank you for sharing her/your journey with us.

  4. I have been praying for Lily and your whole family since you first came home with her, and I am not stopping! She is so precious.

  5. We will continue to pray for you, Emily, and for this precious, precious child! As precious as she is to you and Jacques and your entire family and those of us who love her and you from afar, she is even more precious to our Father in heaven. We know He hears our prayers for you!
    Standing in the gap, praying,
    Sharron Wolfe

  6. Very complex is superceded by HOPE! I appreciate how very difficult your deliberation and decision was. We are just now beginning to feel like we are "on the other side" and our journey has included much of the above. Take heart, dear one. As Lori said, may God be in, around, and through it all.

  7. Praying for you. We have some friends of friends that are on your same journey . . post transplant . . I bet she would be an awesome resource if you wanted to contact her through their blog. http://www.olsonfamily7.blogspot.com/ Amazing lady with several medically complicated adopted children
    . .

  8. Hope is such a beautiful thing. We're praying without ceasing for a miracle!

  9. A friend of mine's baby just passed away in Valentine's Day and it really devastated me...He was only one years old. But he was able to donate his organs and although we don't know who got them, it helps me to see Lily's face and see her story and know that through one person's pain another life can be saved. Praying for healing in Lily and a long, healthy, wonderful life.

  10. I have been following Lilly's journey from the sidelines for a while now and although I have not been through what you and your family have, I can certainly appreciate what a difficult decision you have faced. You often say "my heart is full" and so is mine to know that you and J have chosen "hope"! You and your family will remain in our prayers and I love one of the other comments about "standing in the gap" because that's where it seems like we are all standing for Lilly Grace! God Bless...

  11. I stumbled across your blog a few months ago, when we were at the very beginning of our still young process of adopting a beautiful specisl needs daughter from China. I was seeking hope, myself, at the time. I have been praying for you, your family, & of course, Lily ever since. I believe you when you say you are weary & clinging to hope. My go to verse is 1 John 1:5, the Light shines in the Darkness & the Darkness has never put it out. May the Holy Spirit flood you with strength when you have nothing left.