Once Upon A Prayer

Monday, July 14, 2014

Happy Hero Heart Day Lily!

One month ago today, our family received the most precious humanely gift that can ever be given.

On Friday the 13th at 7:10pm I had just finished giving a lecture at the university when I noticed that I had six missed calls and voice messages on my cell phone from numbers that I did not recognize.  The first thing that caught my eye was a voice message that Jacques had forwarded to me via text.  About one sentence into the message, the name of Lily's heart transplant cardiologist caught my eye, and my heart instantly skipped a beat.  Was this THE call?  Sure enough it was...they had a heart for Lily!

I barely remember my drive home, but I will never forget when I opened the door to the house, and saw Lily standing in the school room playing with Soleil.  She immediately ran over to me and asked, "Is Papa joking?  Am I really going to get my new heart?"

I quickly packed a couple bags to bring to the hospital.  At one point Jacques walked into our bedroom and I collapsed into his chest hysterically crying.  Fear gripped me from head to toe.  I could hear every conversation that we had over the past six months with the doctors replaying in my mind about how risky a heart transplant would be for Lily...not to mention the fact that she was turned down from being listed from two of the top heart transplant hospitals for children.  Jacques held me, and reminded me that after two years of pain and suffering, long hospital stay after long hospital stay, this new heart would bring one of two things for Lily.  Either this new heart would give Lily a new lease on life, and she could FINALLY play and run like she has always dreamed of doing. Or, Lily would not survive the transplant or the recovery, and she would spend eternity in heaven with Jesus.  Both options were a win/win situation for our little empress.  Lily has taught me that we must always choose hope no matter what.  So in that moment HOPE is what I chose.

Our dear friend Jan came to the rescue to stay with the other three girls, and before too long, Jacques, Lily, and I were off to Washington DC to get Lily Grace's new hero heart.  We arrived to the hospital around 10pm, and Lily was directly admitted to the Cardiac Intensive Care Unit where she took care of getting herself all hooked up to the heart monitor and pulse oximeter machines.

Lily had an EKG, echocardiogram, an IV placed followed by LOTS of blood work, urine collection, and MANY hospital friends stop in to say "hello"!  Lily stayed up until 2am playing playdoh, singing "Let It Go", and thoroughly enjoying her pre-transplant party.  At promptly 5:30am, Lily was wheeled down to the operating room.  She was sedated, intubated, and put on bypass through her groin.  Jacques and I went outside to watch for the helicopter that would bring Lily's heart to the hospital.  Little did we know that Lily's new heart would not arrive until 12pm!

It's here!  Lily Grace's Heart is here!

Twelve hours after Lily's heart transplant surgery began, she was wheeled back to her room in the Cardiac Intensive Care Unit by her team of smiling doctors.  An hour after that, Jacques and I were allowed to see Lily Grace, and be introduced to her new hero heart.

There are no words for that moment.

 Lily's hero heart story would not be complete if I didn't share this:

Four days before we received the call that there was a new heart for Lily, we had "THE" heart transplant talk. I knew this day was coming, and I could tell by the way that Lily's questions were escalating in intensity that I was not going to be able to dodge that bullet any longer. Since Lily is only 4 years old, I was hopeful that she would be content in knowing that she would have another surgery where she would get a new heart...end of story.  But on that day, Lily was adamant that she wanted to know exactly how she would get this new heart, when we would get the phone call, and where this new heart would come from. So in the minivan on our way to get Lily's blood drawn that morning I shared with her through many tears how she would come to have a new heart. Lily's first question was, "Hmmmm...will they make sure my new heart doesn't have any germs on it? I need to be very careful of germs ya know." I assured Lily that her new heart will be very clean. The next thing Lily wanted to know was why I was crying. I explained to Lily that my heart was sad thinking about how much the family will miss the little child who will die. Lily immediately suggested that we get Thai chicken noodle soup for lunch since that always helps her feel better when she is sad.  At the Thai restaurant, Lily asked if she could pray for our meal, and she began by praying for the family who will be very sad when their child dies. And then she asked God to help her mommy to not be sad.  This child astounds me.  An old soul, wise beyond her 4 years.  

Lily praying for her heart donor's family

For those of you that know how organ donation works, the fact that Lily and I had this conversation four days before the call for Lily's new heart should give you chills.  "At some point, a potential donor is admitted to a hospital because of illness or accident. Most donors are victims of severe head trauma, a brain aneurysm or stroke. Healthcare professionals work hard and long, doing everything possible to save the patient's life while maintaining the patient on mechanical devices.  When the medical team has exhausted all possible lifesaving efforts and the patient is not responding, a physician will perform a series of tests, usually on multiple occasions, to determine if brain death has occurred. This is usually done by a neurosurgeon or neurologist in compliance with accepted medical practice and state law. Patients who are brain dead have no brain activity and cannot breathe on their own. Brain death is not coma. Brain death is death" (http://organdonor.gov/about/organdonationprocess.html).  This process takes several days, so it is highly likely that Lily was praying for her organ donor's family very close to the time of their death.  I am so thankful that God prepared Lily (and me) for what was about to occur.  As we drove to the hospital on the night of Friday the 13th, a peace washed over me that Lily knew, to the best of her ability, what was about to occur. 

A bowl of Thai Noodle Soup bigger than her head!

Lily's surgeon told us that he believes she is the most complicated heart transplant done in the United States.  He said that he saw a lot of complicated heart transplants during his time at Boston Children's Hospital, but nothing compared to Lily's case.  Shortly after her Fontan procedure two years ago, Lily's right pulmonary artery clotted off and became discontinuous from her heart.  During the transplant, her new heart was attached to her left lung.  Lily's heart donor was not a lung donor due to trauma, so the team was able to take the right pulmonary artery with the hope of attaching Lily's new heart to her right lung someday.  For now, Lily will be a single lung heart transplant recipient.  Lily's recovery has not been easy, but through it all, she has continued to fight for her life.  Over the course of the past month, Lily has amazed the medical professionals with how well she is doing!
 Our response: "Only God!"

 Our family is overwhelmed with how perfect this new heart is for our precious Lily Grace, and how sovereign God was in bringing her this specific heart.  There will need to be a whole blog post devoted to that story someday when we are ready to share!  Lily Grace's life is miraculous.  We have witnessed miracle after miracle throughout her life that have taken our breath away.  From lost to found, orphan to loved...God sets the lonely in families.

For regular updates on Lily's progress 
please follow on FaceBook at  Praying For Lily

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. Tears....Lily has been in our nightly bedtime prayers. To read this news this evening is beyond wonderful! What a treasure. Continued prayers for Lily and her new hero heart, and for the family who were brave enough to help another little one during their time of loss. Hugs.

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    1. Don't know how i just deleted this but..... Just wanted to say that I'm praying for Lily. She is such a little fighter! It's amazing to witness God's miracles. Beep (love) you Lily! ~allie (sister, Rose, adopted from China Feb 2014)

  3. I pray that the Lord God will grant Lily good health and comfort to the donor's family she has prayed for. Our God is able! Love from a Congolese brother. Alain

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