The Formation of a Heart, Part 1

Both the critically abnormal and the wonderfully life saving features of her heart were not accidental. They were knitted together by the Hand of God, in the secret unseen places of her mother’s womb.

Psalm 51:10 has been like a steady fountain of prayer over the past several months of my life.  

Create in me a pure heart, O God,
and renew a steadfast spirit within me.

Psalm 51:10

They are words scratched across a tiny post-it note, in a 7 year old’s print taped to my bathroom mirror.  It was a gift from one precious heart warrior with a scarred chest, days before we flew to China. Words are powerful and effective to build up and tear down.  These words have ministered to me morning by morning. They remind me to pray for a pure and clean heart in my own inward places and then overflow as a prayer of intercession, knocking on the door of heaven that God might lay a path to restore my daughter’s broken heart to one of wholeness and health.  These particular words continually tear down my fears over Esther’s future and build up my faith in the God who creates purity and renews….and so I cling to these words of hope.

As most know, when we were matched with “Bei Bei” back in October, we began our gradual journey of education into the unknown world of cardiology.  As a child with a single ventricle heart, we were immediately told that she had “complex” special needs, but our minds didn’t need to know all the details of those needs just yet.  We just knew she was ours and we were in love at first sight from the few pictures we had and a limited amount of medical information. Bart and I quickly learned that the range of severity and symptoms of children with a single ventricle heart is quite varied, but they all have one thing in common: extensive open heart surgery is necessary for a good quality and potential length of life.

Just 2 weeks after we were matched I sent this text message to my Bible study girls:

“A lot of things are happening in our adoption world today and a lot of helpful, but scary info is being thrown at me about our girl. We are throwing our lives at the feet of Jesus in trusting His complete goodness and sovereignty over every detail of life, plans, and normalcy…..knowing that everything He does is good, even if it seems bad and terrifying. As our eyes open to the severity of her heart needs, even beyond the attachment/orphan needs, we are praying for miraculous answers to prayer in the weeks, months, and years ahead.  We know that God formed her perfectly, fearfully, and wonderfully. & we feel immeasurably blessed that we get the privilege of meeting her global needs of love, care, and family. But these kinds of words & phrasing puts a pit in my stomach. Please just join me in pleading for God’s manifest presence to do wonders among us in her little body!

:: While outcomes have improved, single ventricle defects remain one of the most challenging congenital heart defects to manage….The mortality rate during this time period {between the 2 necessary heart surgeries} is estimated to be 10-15 percent. ::

Since beginning our trail of appointments to Cincinnati Children’s Hospital back on December 31, we have received quite an education on healthy heart function, single ventricle hearts, and the unique function and “abnormalities” of our Esther Bei’s heart. Each trip to the hospital has brought a new experience and opened our world into all the highs and lows of caring and advocating for a child with special needs. From facing medical trauma, to restraining a screaming toddler during blood draws and xrays, to looking into the sympathetic and compassionate eyes of doctors as they attempt to explain the rare and complicated abnormalities hidden inside of her chest. All of these experiences have been opportunities to draw near to Jesus.

This past week, we had another string of appointments for Esther’s heart, culminating in a heart catheterization.  This procedure was intended mostly for the purpose of diagnostics, a final step to understanding all the complexities of her heart anatomy and the pressures therein before they pry open her chest for the big surgery later on.  And so, another learning experience ensued for Bart and me to accept the fact that for Esther’s good, she was going to have to be put to sleep for 3+ hours in the operating room, while they snake a tiny catheter into her groin and up through her veins and arteries to explore the secret places of her physical beating heart…the places that thus far have only been touched or seen by the hand of God.

By God’s grace, I can’t really say that Bart and I were really afraid during this particular string of appointments.  Obviously, it’s never fun to see your baby cry or be afraid, but somehow we have both grown to accept the beauty of this path that He had called us to walk with her, for her, and to be a sort of covering for her in the midst of scenarios she hates.

The truths of Psalm 139 were an anchor for my soul as we stood watch over Esther last Monday and Tuesday.  Specifically, I was clinging to the reminders that He has already searched out and is acquainted with the path we’re on (vs 3), that He hems us in with His hand upon us (vs 3), that even the unknown darkness of the future is as light to Him (vs 12), and that every one of the days of our lives is already written in His book (vs 16).  Therefore, there was no need to be afraid. Our stability and peace is hidden in our ability to keep trusting in Him.

All praise to God, when our time in the waiting room was over, the cardiologist came out to show us the images and explain what he found.  With joy, the team shared with us that given the unique anatomy of her heart, she has unbelievably healthy function and pressures in her heart. Obviously, this explains why she appears to be the picture of health on the outside.

He also commented on one of her multiple diagnosed abnormalities, called a pulmonary stenosis. For the second time, we were able to hear the miraculous explanations of how this tiny little ring, or band, around her pulmonary artery has thus far saved and preserved her life.  It has been made clear to us that if she did not have this pulmonary stenosis squeezing the blood flow from her ventricle to her lungs, she would have died as an infant. Or, best case scenario, they would have had to do emergency surgery to put an artificial band around it, to save her life.  Instead, her Maker put it there as a natural survival mechanism. Overall, she’s defying the odds and doesn’t even know that her body is a functioning real life miracle.

As we waited bedside for Esther to wake up from her induced slumber, my heart continued to meditate on Psalm 139, especially verses 13-16 and worship God for the way He made Esther:

For you created {her} inmost being;
   you knit {her} together in {her} mother’s womb.
I praise you because {she is} fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
{Her} frame was not hidden from you
   When {she} was made in the secret place,
   when {she} was woven together in the depths of the earth.
Your eyes saw {her} unformed body;
   all the days ordained for {her} were written in your book
   before one of them came to be.

Psalm 139: 13-16

Both the critically abnormal and the wonderfully life saving features of her heart were not accidental.  They were knitted together by the Hand of God, in the secret unseen places of her mother’s womb. And we believe that it was that wonderfully and uniquely created heart that caused a little baby born in China to find herself on a very windy, bleak, and broken road that led her to becoming Esther Bei, a beloved daughter and sister of the King family.  That broken path has brought exponential and unexpected JOY and healing to her family just as we pray the same over her. Most importantly, as a direct result of that complex congenital heart defect, our sweet and spunky Asian beauty is learning about the saving blood of Jesus. That’s redemption! She already loves to sing and declare His praises all day long:

“What can wash away my sin?
Nothing but the blood of Jesus
What can make me whole again?
Nothing but the blood of Jesus
Oh, precious is the flow
That makes me white as snow
No other fount I know
Nothing but the blood of Jesus”

Just like other children born with a single ventricle heart, Esther will still have to undergo open heart surgery to re-route the plumbing in her cardiovasular system. The surgery itself comes with many scary risks and threat of further complications later on. However, we can press on with illuminated hope in the trustworthy plans of a God who formed her just as she is. The testimonies of his past faithfulness will continue to inform the ways we can place our trust in His future grace & ward off unnecessary anxieties about what is ahead. He formed her for His own glory and no matter what windy road she has endured or will face in the future, we can continue to put our hope in Christ- who is our steady hope of glory.

As he {Jesus} went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

John 9:1-3