Saturday, February 15, 2014

Day 15 - Lily Grace Rancourt

Thank goodness the word "terminal" is only an earthly term.
It is not a scary word really, since our flesh is temporary
and we are all essentially terminal.

A common question I got asked by doctors who met Lily for the first time is, "Did you know how complex her heart was when you adopted her?"  Imagine their shock when I tell them that we chose her specifically based upon how gloom and doom her medical prognosis was. 

Lily has Hypoplastic Left Heart Syndrome (HLHS).  Simply put, Lily was born with only half of a heart.  She also has Heterotaxy, which means that all of her organs are on the wrong side of her body.  Lily’s heart is further complicated by being upside down, backward, and in the right hand side of her chest.  She had two open heart surgeries in China, and then the surgeons deemed her “terminal” and inoperable.  At that point her orphanage had her adoption paperwork completed.  We came to find out on Gotcha Day from the Director of Lily’s orphanage that they truly believed a family would never ‘chose’ her. 

Children with HLHS typically have a series of three palliative open heart surgeries.  It wasn’t until Lily was home from China, and she had her third open heart surgery that we understood why the Chinese surgeons deemed her inoperable.  The very first surgery that Lily ever had was to insert a shunt into her heart to increase pulmonary blood flow.  A textbook BT Shunt is placed on the right hand side of the heart, near the Superior Vena Cava.  Lily’s Superior Vena Cava is located on the left hand side of her heart due to Heterotaxy.  Unfortunately, the surgeon placed Lily’s BT Shunt on the right hand side of her heart, far away from her Superior Vena Cava.  This mistake began a series of critical issues for Lily Grace.

Shortly after her third open heart surgery, called the Fontan Procedure, Lily’s right pulmonary artery (RPA) became completely discontinuous from her heart.  Last winter her surgeon attempted to reattach her RPA to her heart with a donor adult femoral vein, but unfortunately that surgery failed.  Lily is currently living with only one functioning lung.  Most recently, Lily was evaluated for a heart transplant.  Due to numerous high risk factors, three transplant centers have told us that they do not feel Lily is a good candidate for a heart transplant at this point in time.

The cardiologist who reviewed Lily's medical file while she was still in China 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.  But, what Lily really needed more than surgery 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 almost two years “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 20 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.

Then I heard the voice of the Lord saying,
"Whom shall I send? And who will go for us?" And I said,
"Here am I. Send me!"

Isaiah 6:8


Lori said...

Oh yes, Lily!!! A million times over... You were worth it!!!! So glad your Mommy and Papa said YES! I pray God gives you miracle after miracle so that their lives can be filled with more of you... and when we all get to heaven, we will giggle and play and thank God that He brought us all together through the half hearts of two little girls that would change our lives forever!!! Live life to the fullest today Lily! You are loved! Auntie Lori

Drea said...

Such a beautiful post, Emily!

ask jan said...

All you have to do is be around adorable Lilly for a few moments to know she knows love! You are the exact perfect mommy she needed and Jacques is the perfect papa! Of this I have no doubt! I so admire you both and hold you in my prayers regularly! Thanks for sharing here!

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