Once Upon A Prayer

Friday, November 22, 2013

Love is worth the RISK

Lily has been in the hospital since last Sunday.  We were here to bridge her off Coumadin and onto IV Heparin so that she could have a heart catheterization on Wednesday.  The heart catheterization is needed to obtain information for the heart transplant team to determine if Lily is a good candidate to be listed for a new "hero heart".

Lily has had cold-like symptoms for the past two months so we didn't think much of it, but her pre-surgery bloodwork came back with a high white blood cell count of 26.  When the labs were repeated on Tuesday her count was only down to 22 so the decision was made to cancel her heart catheterization.  A viral panel also showed that Lily had a rhinovirus (common cold).  Her weight increased an unbelievable 1 kg (2.2 lbs) overnight.  Our little princess was super puffy, and definitely did not feel well.

 The decision was made to put Lily back on her Coumadin in order to send her home for about a week before we would check back in to attempt the heart catheterization again.  The transplant team tried to maximize her time here so they have been collecting various vials of blood each day that are needed for her heart transplant evaluation.  Lily also needed a dental clearance so she had her very first dentist appointment.  Please don't judge, we've been slightly busy dealing with life threatening conditions instead of her teeth :-)  Lily will tell you that she did not like this experience, and ended up puking all over her nurse and dentist.  

The good news is that her teeth look great!  

The plan was to send Lily home today "if" her blood levels were trending upward.  Unfortunately, in true Lily fashion, her blood levels went down instead of up and she spent her entire morning puking and dry heaving.  So needless to say, we are still here!  

The heart transplant cardiologist came to check on Lily this morning.  She told me that at the morning team meeting, the cardiologist who reviewed Lily's medical file while she was still in China told her that he was worried that he may have given us false hope about Lily's congenital heart defect.  The truth of the matter is that before we even knew if Lily was operable we submitted a letter of intent to make her our daughter.  Lily needed heart surgery that China would not (could not) do.  And now she needs a heart transplant that China never would have listed her for.  But, what Lily really needed was the love of a family.  Prior to bringing Lily home from China Jacques and I always said that we wanted desperately to show Lily the love of a family for as long as God allows her little heart to beat.  And here we are a year and a half “home” and Lily does KNOW the love of a family, and she knows about Jesus and how much He loves her too!!!!  

Lily only has half of a heart and one functioning lung.  But you would never know it after meeting her!  She is filled with life, extreme love, and bountiful HOPE.  It has been an honor to be Lily’s mommy.  I have learned through this adoption that even more than Lily needing a family, I needed Lily.  She has taught me more about life and love in the 18 months that I have known her than I learned in the prior 33 years combined.  Loving Lily is an excruciating love.  Selfishly, Jacques and I want more than anything for Lily to grow old and outlive us.  But whether she does that or not, if I am still alive to see her take her last breath, I will know without a shadow of a doubt that adopting Lily was exactly what God meant when he told us to go and be LOVE.  Love is risky, and my heart might shatter again into a million pieces. 

But let me tell you that it is SO worth it.  
A million times over.  

Love is worth the risk.

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.  Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing, because to this you were called so that you may inherit a blessing.  
1 Peter 3:8-9


  1. Amen and amen dear friend! Love your perspective!! Love your heart! Love that even with everything you have going on I love that you offered to bring me dinner tomorrow night! Wait......what? :)

  2. May God continue to guide you, Jacques and the doctors as we all love Lilly! She is just a bundle of love that attracts you too her to love and that my dear Emily and Jacques is the gift you have given her! Your prayer warriors, some you know and many you will never know this side of heaven, are on duty. My friends always ask about her though they do not know any of you they pray for you as they feel the love! So Lilly is Love Strong! She continues to teach us to love well!

  3. Continue to keep Lily and your family in our hearts and prayers. I watched Lily as a waiting child, she took my breathe away, beauty, hope and so in need of a loving family. I am humbled to pray for you as you do God's work here on earth. Peace and love is my prayer for you today.

  4. Our family is praying for your sweet Lily and your family!! She is such a precious child!!