The Giver of LIFE... (Rachel's New Heart #4)

  All things came into being through Him, and apart from Him nothing came into being that has come into being. In Him was life, and the life was the Light of men.  John 1:3-4

The God who made the world and all things in it, since He is Lord of heaven and earth, does not dwell in temples made with hands; nor is He served by human hands, as though He needed anything, since He Himself gives to all people life and breath and all things; and He made from one man every nation of mankind to live on all the face of the earth, having determined their appointed times and the boundaries of their habitation, that they would seek God, if perhaps they might grope for Him and find Him, though He is not far from each one of us;  for in Him we live and move and exist...  Acts 17:24-28

There is a part of Rachel’s story that has not been told, yet it is the most miraculous of all.  So miraculous, that I have struggled to find adequate words to tell it.  Part of my struggle is in communicating my deep belief that, regardless of how God chooses to work and move, He is good!  It is easy to proclaim God’s goodness when His sovereign choices agree with our personal desires.  But He is equally as good when His answers to our deepest prayers are disappointing and sometimes heart breaking.  His Lordship over all things often includes both.  In the giving of Rachel’s new heart and the answer to our desperate prayers, God’s way meant the devastating loss of life for another.  This is hard for me to come to terms with.  Peace only comes when I recognize that God alone holds the power of life and death.  My deepest desire is to bless His name in the giving of life and the taking away.  May my heartfelt praises always be...  "The Lord gave and the Lord has taken away.  Blessed be the name of the Lord."

Rachel’s new heart arrived in the operating room where she was waiting at approximately 4:50 AM on May 6, 2015.  The moment it arrived safely in the ordinary cooler that contained it, her broken heart was clamped in her chest and man-made machines would artificially sustain her life until the healthy heart was stitched in its’ place and could take over the role of pumping life-giving blood through her body again.  For all practical purposes, that moment marked the end of Rachel’s life that God had chosen to sustain for almost 11 years, in spite of a very broken heart.  The choice to bring new life through the gift of another’s heart lay solely in the hands of God… He alone could breathe new life into our precious daughter.   Man can remove a beating heart from one and stitch it into the chest of another, but he cannot breathe life into that heart… God alone is the Giver of Life!

 God has chosen to use many people to play a role in Rachel’s beautiful, redemptive story.  As the adoptive parents of a child whose prognosis was terminal, we are often penned as the heroes of that story.  But it took many, many people along the way to do what we could not have done alone!  Someone finally listed her for adoption, others advocated for her, and then many provided the funds for us to bring her home.  Skilled professionals would provide the medical care it took to overcome what appeared to be insurmountable odds against her.  Family, friends, teachers, nurses, doctors, technicians of every kind, and the overwhelming support of the people that love our girl as much as we do, were all a part of the miracle story God has been weaving.  

Rachel’s beloved cardiologist, Dr Fricker, was a part of her story even before she came home from China, and has now become more like a grandfather to her than a cardiologist.  He will forever be a special part of our family!

God has used Dr Bleiweis to bring healing to our girl as an incredibly skilled surgeon and, in our opinion, rivals anyone in the country as one of the best at repairing and replacing broken hearts.  He encouraged us with hope for Rachel’s heart the moment he read her file from China.  How fitting that
he would be the man performing Rachel’s heart transplant when the perfect match was finally found.  We would have it no other way!

“The Spirit of God has made me, and the breath of the Almighty gives me life." Job 33:4

YET… without God breathing life into Rachel, each and every moment of every single day, her story would not be the unfolding miracle it is!  He alone deserves all the glory for the work He has done in and through her!

Throughout the night, reports from the operating room were glowing.  There was a lot of scar tissue to work through, collateral vessels to gather, and even an aorta which had attached itself to the back of Rachel’s sternum that had to be disconnected before she could receive the healthy heart that was now on its’ way.  But Rachel was stable and things were progressing just as everyone had hoped.  The timing in removing the old to make way for the new was proceeding right on schedule and hopes were high that this transplant would go without a hitch! 

By around 7AM, Rachel’s broken heart had been removed and a perfectly healthy one had taken its’ place inside of her.  Everything was stitched into place and it was time to let that new heart take over for the machines that had been keeping Rachel alive throughout the night. 

But as the transplant team began to make the transition in allowing that heart to beat, it did not…   

The operation that appeared to be going perfectly, suddenly was not! 

Human hands had done all they could, but they could not make Rachel’s new heart beat!  A decision was made to clamp all blood flow surging into the new heart for a period of 20 minutes and allow the machines to carry the load, while giving it a chance to “rest” and acclimate to its’ new home.  Then they would try again and hope for a better outcome. 

I am told that the energy in the operating room suddenly fell flat.  What had been a flawless surgery, had taken a very bad turn, and tensions were very high.  While letting the new heart “rest”, Dr Bleiweis left Rachel’s side and sat down nearby in nervous disbelief.  How could we have waited over three years for the perfect match to now be met with such a disappointing result?  This was not what anyone expected after such a successful surgery and the alternatives for Rachel should this heart not begin beating seemed unacceptable.  

It is difficult to understand the immense burden on the shoulders of Rachel’s cardiologist, Dr Fricker, in that moment unless I share with you something I have not done so before.  When Rachel became ill just over a year ago, many believed that she would not be able to live much longer with her very broken heart.  Several very difficult conversations took place between Doug and I and the team of people caring for her, headed up by Dr Fricker himself.  Would we be willing to hospitalize Rachel until a new heart came?  And if her heart finally gave way, would we let her go or place her on life support in hopes that a heart might be found in time instead?

Rachel wanted only one thing and she never once wavered.  Rachel would live waiting, but she would not wait to live!  She absolutely refused to die lying down!  She had suffered a horrid existence inside the four walls of an orphanage for the first seven and a half years of her life, and now that she had been redeemed to a new life with a family she loved, she intended to live it!   Through the lips of a nine year old, with the understanding of a grown adult, she told me repeatedly that if God did not bring a new heart in time, we were to let her die.  She insisted that this was a “win-win” in her book, since living meant doing so for Jesus, and dying meant being with Him instead.  Either way, she “won”… 

"For me to live is Christ and to die is gain"  Philippians 1:21

Who was I to stand in the way when she asked Dr Fricker to sign a DNR on her behalf, should she suddenly collapse while living life to its’ fullest?  He resisted at first, but finally did so with tears in his eyes.  Now, if the heart that he had waited so long to accept for the little girl he loved, did not beat on its’ own, he would be forced to put her on the very life support she had asked him to deny.  My heart feels heavy just typing it…

I was lying alone in Rachel’s hospital room when a call came from Dr Fricker’s cell phone.  It was 7:30 AM and I expected to hear the happy news that Rachel’s new heart was beating inside of her!  Instead, I detected nervousness in Dr Fricker’s voice immediately.  “Listen,” he said, “things are not going well, and we are all very worried.  Rachel’s new heart is “sluggish” and not wanting to beat on its’ own.  We are going to let it rest for 20 minutes and then try again.  We really need you to pray.  Just pray…”

I hung up in disbelief.  Everything had been going perfectly!  What do you mean… “Her new heart doesn’t want to beat”?  How could this be?  I had not even allowed myself to believe that a heart would finally come after three years of waiting, and now that it had, I was stunned that it might end this way…   

Doug had made his way to the capital of India and was there waiting for a flight bound for Paris.  I dialed his number to Face time with him and pray.  He, too, was stunned at this update and immediately turned his questions into prayers.  I cried and agreed with him as he voiced our pleading to The Lord.  I have never heard my husband beg God for anything… but in those moments, he literally begged God to spare the life of his daughter~ that the precious gift of this heart would not result in the death of two, but that God would bring life through the one.  We encouraged one another with the Truth.  We had not been promised a happy ending.  God’s sovereign will would win and we would trust Him in that.  We vowed to glorify Him no matter how He answered and we hung up to wait. 

We didn’t know then what we know now… In those very moments of our desperate praying, sometime between 7:30 and 8 AM, God was weaving a miracle in the heart of our daughter!  At His Word- He breathed LIFE into Rachel and her new heart began to beat on its’ own in perfect rhythm!  What a surgeon could not do… God DID! 

 Then the Lord God formed man of dust from the ground, and breathed into his nostrils the breath of life; and man became a living being. Genesis 2:7

I believe with everything in me, that God perfectly purposed this event to demonstrate HIS power over life and death.  Let no man or woman, mother or father, doctor or surgeon, ever believe that the power to breathe life into a human being comes except through HIM!  Rachel lives today, because God reached out in mercy, touched her new heart, and caused life-giving blood to beat through it!  To HIM belongs all the glory!  

    You alone are the LordYou have made the heavens, the heaven of heavens with all their host, the earth and all that is on it, the seas and all that is in them.You give life to all of them And the heavenly host bows down before You."  Nehemiah 9:6

We don’t know how many days this new heart will bring for our daughter.  It may be many- it may be few.  But we have learned through Rachel, to live whatever days He gives to the fullest, and we will do so glorifying HIM- The Giver of Life!

Again He said to me, “Prophesy over these bones and say to them, ‘O dry bones, hear the word of the Lord.’ Thus says the Lord God to these bones, ‘Behold, I will cause breath to enter you that you may come to life. I will put sinews on you, make flesh grow back on you, cover you with skin and put breath in you that you may come alive; and you will know that I am the Lord.’”
So I prophesied as I was commanded; and as I prophesied, there was a noise, and behold, a rattling; and the bones came together, bone to its bone.  And I looked, and behold, sinews were on them, and flesh grew and skin covered them; but there was no breath in them. Then He said to me, “Prophesy to the breath, prophesy, son of man, and say to the breath, ‘Thus says the Lord God, “Come from the four winds, O breath, and breathe on these slain, that they come to life.” Ezekiel 37:4-9

EXTRAORDINARY through the Ordinary... (Rachel's New Heart #3)

The first incision to prepare Rachel for the arrival of her new heart was made at approximately 1:30 AM on May 6, 2015.  Earlier in the day, part of the transplant team had already made their way to the site of the precious donor who would ultimately bring life to Rachel through their beating heart.  It wasn't until the team had arrived there and actually gotten a good look at the heart that the final decision was made as to whether they would accept or decline this gift for Rachel.  It was perfect!  Surgery was a "Go"!!!  The extaordinary redemption of what was broken had begun!

I honestly don't know what I did during those hours...  I talked to Doug several times through out the night, before he boarded a plane to the capital city of India, and I tried to busy myself in updating my friends and family as they waited with me near and far.  But mostly, I spent the night alone in what would be Rachel's hospital room for her entire recovery, and I waited for news.  Everyone encouraged me to get some sleep while I had the chance, but I could not imagine sleeping while my little girl fought for life just a few floors below me.  There would be time for sleep later.  Instead, I laid down on my recliner bed and literally visualized myself laying in the lap of God.  I am a lover of words, and I am rarely without any, but on that night, I couldn't find a single word to say to the Lord that hadn't already been said.  Tears came instead.  I knew God understood those better than words, and I found comfort lying there with Him and allowing my emotions to overflow in tears of joy and grief mingled together.

My heart literally agonized for a mother I didn't even know.  I have prayed for her for over three years now... wondering who this unknown hero might be that would ultimately share life with my daughter.  Tonight it didn't matter.  I knew that wherever she was, she was hurting, and I was hurting with her.  I wept because I knew that in those very hours her child would slip into eternity and leave a vacant place in her heart, while hope for more time with my child would be born in mine.  I was overwhelmed with the unfathomable thoughts of God that I am certain I will never understand.  Why her child?  Why not mine?  Why should I receive?  Why should she lose?  The gravity of such an exchange from one mother to another unleashed emotions from within me that I didn't know existed.

The anesthesiologist caring for Rachel in the operating room was kind and kept his promise to update me frequently throughout the night with news of how surgery was going.  He was most gracious to let me know precisely when they expected Rachel's new heart to arrive at the hospital and I intended to be there when it did!  So, at 4:30 AM, our weary crew gathered outside the emergency room entrance of the pediatric unit of Shands and huddled in blankets as we waited for the ambulance carrying our precious gift to arrive.  I could not stand still, so I paced up and down the sidewalk, hardly breathing until the ambulance finally rounded the corner and made it's way toward me.  An ordinary ambulance delivering HOPE for my daughter!

The transplant team and surgeon carrying the heart jumped out of the ambulance and hurried past us with great urgency.  They seemed amused that we were waiting there, as if this were unusual, but they didn't stop us from following, so you can bet we DID!  I remember saying something to the surgeon as he hurried by about "my daughter's new heart", but otherwise no one said a word! I was so fixated on the cooler rolling in front of me with the simple words "Human Organ for Transplant" and  "HEART" stickered on it, that I'm not even certain I was breathing!

We followed the transplant team and that beloved cooler right through the Pediatric Emergency Room and as far down the hospital hallways as they would allow us to go before a door finally closed behind them and they disappeared into an elevator that would take them and this extaordinary gift of HOPE to the operating room where my daughter was waiting.  No one spoke a single word. I just stood their in the hallway of the hospital at 4:45 AM and I sobbed.  All of the uncontainable emotions within me collided and spilled out.

This extraordinatry gift, and the indescribable loss that it represented, ...delivered in an ordinary cooler.  The sight of it and everything it represented literally knocked me to my knees!

I am struck at how God has always chosen the ordinary through which to perform the extraordinary.  Maybe that's why we miss Him so often.  Even God's saving HOPE in the gift of His Son was delivered to the world through the ordinary!  Can't you see it?  Extaordinary HOPE through the ordinary!

I saw Him again tonight when extraordinary HOPE arrived for my little girl in an ordinary cooler!

Unacceptable Alternatives... (Rachel's New Heart #2)

There are certain moments in your life that you have longed for and dreamed about for so long that when they finally come, a numbness washes over you and it is as if you are living a dream in slow motion.  So, on May 5th, when I got the long awaited phone call that a heart had been found for Rachel, I can remember trying to take in every single detail of the day and committing them to memory so that I could recall them, to not only share with Doug, but to better digest them later, when my emotions were not so on edge... That's much how I felt as I made my way to Gainesville from home with Rachel for an operation that would ultimately change our lives, either for our incredible gain or for our indescribable loss.

While the opportunity for life can not even begin until that phone rings and news of a perfect match is announced, the realization that this milestone could also mean the end of an earthly life for our precious girl lingers behind every thought.  I learned as we waited, to not take the moments we had been given for granted, knowing that this time could be all the time we had with our daughter!  This news rightly brought the celebration of hope for the life this new heart might bring, but we would have been unwise to forget that the surgery that could bring life to Rachel was a very dangerous one and hers would hang precariously in balance through it.

One particularly poignant part of the process was when they brought consent forms for me to sign as Rachel's mother.  It included a list of risks involved with heart transplantation that was long and daunting.  Most of those risks seemed way beyond any a sane mother would voluntarily agree to.  But without this surgery, the risk of losing Rachel was 100%.  No one could predict how much longer Rachel could survive with her broken heart, but most agreed that she had already far out-lived all expectations and without this life-giving gift, her days, months or years would likely be few.  I've always considered myself to be a risk taker, but the only thing that made me willingly pen my name along that blank line was the unacceptable alternatives we were facing if I did not... 

I was humbled and saddened, too, that another mother had signed a consent much like this one only hours earlier, except that her signature gave life away, while mine received it with hope, in spite of the risks.  My signature had never before felt so weighty or life-altering.  Once I put the pen down, there was no turning back!

The mission trip that took Doug to the other side of the world at this precise time, meant that I would face this life-altering surgery without him.  In our years of waiting, we had always made certain that one of us remained at home with Rachel if the other was far away- whether on mission trips, another adoption journey, or even a planned anniversary trip to Israel!  And though we were always prepared, I had hoped God's plan would not mean that one of us would be gone for such a momentous event as this one.

For reasons I obviously can't understand, God's plan included just that, and I would have to make this particular part of the journey without my partner and best friend.  Several friends and even my mom and youngest son gathered around me for support- but Rachel and I both felt a huge void we wished Doug could have been there to fill!  I carried around my Ipad like a security blanket all afternoon and night- both to capture the events on video for him and because it was my only link to him via Facetime calls in between flights as he made his way home to be by our sides!

One incredibly special moment was the time Doug spent with Rachel just before she was taken to the operating room.  He read scripture, encouraged her for the battle, and prayed for God's mercy and protection over everyone involved.  Thanks to modern technology, their time together was possible, as was this beautiful video I will always treasure...

Time seemed to stand still, and yet in all the preparations, 11:30 PM came quickly and the team from the operating room arrived to escort us to Rachel's long awaited heart transplant!

We could escort her just to the hallway doors near the operating room, but would have to say good-bye there.  The ride down the elevator seemed like a balancing act between overwhelming excitement and fear of the unknown.

Crazy brothers can make even the scariest moments seem like FUN! 

We stopped just outside the doors that we could not go beyond.  I got down on my knees to say goodbye...  The answer was obvious, but I asked anyway.  "Are you scared, Rachel?"  Her bottom lip quivered and she started to quietly cry.  My brave warrior was afraid, and I can't say that I could blame her!  I was afraid too, but this was as far as I could go with her, and she'd have to take these next steps on her own.  I whispered Jesus name in her ear and promised her He would be near.  I would be by her side as soon as she woke up with her new heart.

I stepped back as her brother said goodbye and prayed with her and then we watched as the doors shut behind her and she walked away to the biggest event of her young life... 

Incredible Risks vs Unacceptable Alternatives

A single moment... (Rachel's New Heart #1)

 ...can change EVERYTHING!  

The events of the past week have been amazing- miraculous- unexpected.  After three years and two months of waiting, I had all but given up believing the call that a heart had been found for Rachel would ever come… ever.  The hyper-vigilant state I had begun with right after Rachel was listed for a transplant did not last long.  I realized quickly that it is not possible to stay in such a vigilant state long term!  I’m embarrassed to admit that I had become so un-expectant that I had even unpacked my hospital bags.  If the call suddenly came, I’d throw things back together, but the constant reminder of unmet hopes and dreams those packed bags represented were finally put away.  After over 1,000 days on the waiting list, I wasn’t even counting anymore! 

The most difficult thing about waiting is that most of the time it does not include the knowledge of when it will end.  A waiting mom has a good idea when her baby will finally be born, of course, and this serves to help her hang on when the days get long, but other times of waiting hold no such promise.  Rachel’s wait for a new heart included no promises of a happy ending.  This alone made the wait especially hard.  Would we wait in vain for a new lease on life or would all the waiting finally pay off with the realization of everything we hoped for our little girl? 

There have been times in my life when the object of my waiting appeared so far out of reach, it seemed as if it would never come!  In those times I needed to remind myself that in a single moment, at God’s appointed time, my wait would suddenly end and what appeared endless would slip from my memory as it faded into the past.  In fact, the truth is that the most profound moments of our lives are usually ushered in with little warning and those moments actually change everything!   But we would do well to remember that this is also true of our most prized treasures.  In a single moment, those too can slip away!

I've learned over the past several years that since those moments of life altering change come so quickly and sometimes unexpectedly- we need to heed the words of Psalm 90:12 "So teach us to number our days, That we may present to You a heart of wisdom."  God calls us to live for the moments of today and then trust Him with the moments to come that He has secretly ordained for us.  Some of those moments bring inexpressible joy; and some heart-breaking grief.  I am grateful that we can rest confidently in His sovereign hands - knowing that He is wise and will withhold no good thing from us.  I especially need to cling to His truths on days like this one, when life-changing moments overwhelm me!

On May 5, another mother, whom I have not yet met, had one of those moments that would change everything about her life and mine…   One moment her child was alive and thriving and then suddenly, in a split second, that child was gone.  Her choice to give life away in her loss meant that at 2:34 PM, the moment that would change the course of our little girl’s life would finally arrive!

The phone call that we had waited for exactly 1,153 days would actually come in the form of a FaceTime call from our transplant coordinator and our beloved Cardiologist.  I couldn't imagine why she would be calling via FaceTime and the thought didn't even occur to me that our happy news had actually arrived!

I joked around in my usual way and told her I was too busy to chat!!!  I had five little girls about to get off the bus and my day of real work was about to kick into full swing!  With Doug in India- this was serious business and I had my hands full with so many needs!  I was quick to assure them that I was a woman on the edge!!!!

They didn't seem interested in how I was or wasn't coping with all of the new changes in my life and suggested that maybe I needed to pack a bag and drive to Gainesville that very afternoon!  Huh??  I didn't have time to come to Gainesville!!!  Had they completely missed my rant only a few moments earlier?

This very moment was the one I had waited for and dreamed about for so long, and yet I don't even remember what was said!  Something about an "offer" for Rachel and "how quickly can you get here?"  My heart understood before my head did and it momentarily stopped beating and dropped into the pit of my stomach!  Was I hearing what I thought I was hearing?  A heart for Rachel??? Now???

My mind started reeling with all that needed to be done in the moments ahead if this was truly what I had been hoping for!  I had unpacked long ago!  My husband was on the other side of the world and Rebekah was so new!  How would we pull this off?  But of course we would!!!!  I had a lot to do and very little time to do it!

I was to get off the phone and pull things together in order to get to the hospital two hours away as quickly as possible!  I was frantic to get off the phone and somehow reach Doug in India, where I knew he was sleeping, before Rachel climbed off the bus to hear the news herself!!!

Doug didn't answer his phone!!!  Maybe the FaceTime ring would awaken him...  Ahhh, yes!!!! I could hardly wait while it connected!  The room where he was sleeping was completely dark, but I could hear his groggy voice as he answered, obviously alarmed and not knowing what to expect from this middle of the night call!!!  

I couldn't hold back the tears of joy that flowed from an announcement I had wanted to make for three years and two months!!!  "Doug!!!!!  They have a heart for Rachel!!!!  They have a heart!!!!"  We literally sobbed together through a dark phone screen!  It was one of the happiest phone calls I ever remember placing!!!!  And in that moment, Doug's trip was redirected and he would somehow find a way home to be a part of the long awaited answer to so many prayers on behalf of his precious girl!

He asked if Rachel knew yet... She didn't, but her bus was to arrive from school only moments later! I wondered if it might help him feel closer to home if he could have the honor of telling Rachel the news!  He cried at the thought!  

We were ready and waiting on the family room coach connected to Daddy in a quiet hotel room on the border of India and Nepal when Rachel walked in the door from the school bus...  She came running in and headed straight for the bathroom!  Clearly she had no clue that the moment that would suddenly change the course of her life had arrived!  

I hurried her to the front of the screen where Daddy was waiting.  "Daddy wants to talk to you Rachel!  Come here!"  I was surprised at how Doug held it together for the announcement!  But that ended as soon as the words escaped his mouth... "They have a heart for you, Baby!!!  You're getting a new heart!!!!"

Rachel looked as stunned as I was... I think the long wait had taught her to not expect this moment anymore and she actually thought that her Daddy was joking!  When she realized that he was not- she buried her head into my chest as she tried to grasp the way this moment had suddenly changed everything for her!

Daddy promised to hurry home as soon as he could and we raced into action!  My head was spinning!  I had begun to believe this moment would never come and now that it had, I felt paralyzed and unable to think a sound thought!  Everything went into warp speed!!!  My phone rang off the hook and I celebrated with friends and family as I ran around the house collecting everything I thought one would need for a momentous occasion like this one!  

I was in the car and headed to Gainesville within an hour and would arrive at 6 PM to begin the process we had only dreamed about for so long!!!  It seemed as if the whole Congenital Heart Center at Shands had already begun to celebrate!!!  The moment we had all waited for had finally arrived!  

One moment we thought we would lose our waiting daughter- the next moment brought word that maybe, just maybe, there was HOPE for many more tomorrow's with her instead!

In a single moment… everything had changed!  We thank The Lord for moments like this one that could have only been brought through His loving and gracious hands.  We rejoice in this answer and yet grieve that it only came through the heart breaking moment of another family.  We trust, as joy and grief mingle together, that God has ordained all of our moments and will sustain us through them with His sufficient grace.  Our prayer remains that He alone would be glorified in each and every moment of this journey!