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

It's a BOY!

I am accustomed to parenting girls.

Sundresses, hair bows, wiggly pants, tea parties,

princesses, baby dolls, nail polish, lip gloss...
did I mention hair bows?

I honestly never envisioned myself with a son.

Until, this little man absolutely captured my heart...

I have a fun way that we will reveal his name soon,
but for now we will call him "Noah"
since that is the name his foster home has given him.

Very similar to our Lily Grace, hundreds of families turned down his file because of the scary terminal diagnosis that came attached with each cardiologist's review.  Even though "Noah's" file was designated to a very large adoption agency, none of their families chose to proceed with his adoption.  His file disappeared, until an advocate friend of mine named Brooke found him on another agency's designated list.  Ironically, it was on Brooke's advocacy website that I first fell in love with Lily Grace.  This sweet lady is very dear to my heart!

After "Noah's" file had been found, Jacques and I had a prayerful decision to make.  At the time, Lily had been turned down by three medical centers to be listed for a heart transplant.  I was currently living in the Cardiac Intensive Care Unit with Lily, and her future was extremely uncertain.  Our plate was already full and often times overflowing with the responsibility of just trying to keep Lily Grace alive.  We could have easily decided that bringing another critically ill child into our home was crazy, and I think that most of you would have supported us and agreed.  But three years ago, when Jacques and I started down the journey of adoption, we decided that we wanted to live reckless for Jesus.  We chose to put our comfort, security, and financial stability on the line and risk everything to give God the opportunity to show up.  And let me tell you friends, not only did He show up, He has blessed us abundantly in ways that we never dreamed possible.  Jacques and I are at a place right now where we have to rely on God for everything.  Even our day to day living is impossible without Him.  In adopting these children, we have taken on WAY more than we can handle alone.  

But His grace is sufficient, 

and His power is made perfect in our weakness!

Our little dude turned two years old this past February.  He has a combination of heart defects that are very familiar to Jacques and I.  "Noah" has a single ventricle heart just like Lily Grace, and a complete AV canal, which is the same heart defect our Addy Hope had before she passed away.  Unlike Lily, "Noah" has not had any heart surgeries in China.  As a matter of fact, China has deemed him inoperable.  It's hard to tell from the darling, smiling photos but "Noah" fights for his life with each breath he takes.  The medical reports we have on him state that his oxygen saturation is in the 50's-60's resting, and he is very short of breath most of the time.  Lily's cardiology team at the National Children's Medical Center has reviewed his medical file, and they are very anxious for us to bring him home so he can have a heart catheterization.  There are six factors that could in fact exclude "Noah" from being a candidate for the Glenn Procedure open heart surgery, but we will not know for sure until after his heart catheterization.  Due to the progressive nature of what the cardiology team believes is severe ventricular outflow obstruction in the setting of single ventricle physiology, we are desperate to get our boy home ASAP.

Yes sweet boy, that's YOUR Papa and Mommy!

Please follow along, as our family's love story

takes us to China and back again!

But he said to me, “My grace is sufficient for you, 

for my power is made perfect in weakness.” 

Therefore I will boast all the more gladly of my weaknesses, 

so that the power of Christ may rest upon me.  

For the sake of Christ, then, I am content with weaknesses, 

insults, hardships, persecutions, and calamities. 

For when I am weak, then I am strong.

2 Corinthians 12:9-10

Two Year Gotcha Day - and a VERY exciting announcement!

Two years ago today,

I was handed a terrified and hollow little girl

that we would name Mackenzie Ty. 

We met in a HOT Civil Affairs office in Shanghai, China.

Mackenzie had just been released from the hospital,

and I would soon discover that she had a 104.5 fever.

A few hours later,

in a hotel lobby of Hohhot, Inner Mongolia 

Jacques was handed a petrified and obstinate Lily Grace.

Lily's fight or flight instinct kicked in.

Before Jacques could even figure out what happened,

Lily Grace took off running out of the hotel 

away from Jacques, 

with her nanny tailing closely behind.

These two precious girls have come so far in the past two years.

Our family definitely hit the jackpot!

All because we said, "Yes lord, send us."

 

On this very special anniversary - 

Mackenzie and Lily would like to share an exciting announcement!

I prayed for this child,

 and the Lord has granted me what I asked of him.

1 Samuel 1:27

Addy Hope - 1 year home

One year ago today,
our sweet Addy Hope silently entered this world.  

Although she never experienced life outside of my womb, 

her little 7lb 15oz self has forever changed our lives.  

 We never had the privilege of hearing her cry, 

smelling her newborn fragrance, 

or snuggling her gently into the crook of our necks.  

Our past year did not include lullabies in the middle of the night, 

experiencing first smiles, or seeing the miracle of baby's first steps.

Instead, this past year would contain more grief and saddness

than our human hearts have ever endured.

A little over a year and a half ago, I remember vividly the flash of peace that surged across my soul when I thought I had God all figured out.  The moment that I felt I had put together the puzzle pieces of my life, and finally understood where I had been and where my journey was going.  In my shallow understanding of our omnipotent God I thought I discovered His purpose for my life.  I concluded that God brought Mackenzie into our lives to give us confidence in caring for a severely developmentally delayed child.  It was Lily who was strategically placed in our home to help us navigate through the terrifying world of congenital heart disease.  The precious baby that was growing inside of my belly would be a perfect combination of the two children we were already  confidently raising.  None of that could have been farther from the truth.

At 10am, on May 6th 2013 

that false sense of security I had 

would be striped away when my OBGYN 

couldn't find our baby's heartbeat (here).

What our sweet daughter Addy Hope has taught me is that it is not my place to figure out God's plan for my life.  I do not need to find my security in looking for signs or trying to piece together the complex puzzle of this life.  Jesus told us to "take up your cross and follow me".  It's easy to misinterpret this text and presume that the "cross" Jesus is referring to is some burden in our lives.  What Jesus intended was that we must literally be willing to die to ourselves in order to follow Him.  The call to death of self is then beautifully followed by the call to life in Christ - “For whoever wants to save his life will lose it, but whoever loses his life for me will find it” (Mathew 16:25-26).  I've learned that it is easy to follow Jesus when life is smooth and going well.  My true commitment to Him is revealed during times of trial.  This past year has allowed me to test drive my commitment to Jesus at a whole new level.  And I am here to encourage you that God's grace abounds in deepest water.

The eucharisteo -thanksgivng- always proceeds the miracle!

Ann Voskamp - one Thousand Gifts

Heart Transplant

As of Tuesday, March 18th, 2014 

Lily Grace has officially been

listed for a new heart. 

This is a decision that Jacques and I did not take lightly, especially after being turned down by three transplant centers already.  We have been warned that Lily's case is very complex, and nothing will be straightforward or easy to predict.  If Lily does receives a heart, she will be transplanted to her single left lung.  Lily's clotting disorder and multiple blood clots in her body increase the likelihood that her recovery may be very difficult or that she may not even survive.  It is so hard to not get caught up in statistics or the numerous "what ifs" as we embark upon this new journey. 

Jacques and I are also painfully aware of the fact that in order for Lily to get a new heart, another child must die.  Just ten months ago, we sat together in a hospital room holding our deceased daughter, Addy Hope, in our arms.  It takes but only a simple thought for those horrible emotions to flood back into my mind.  Our prayers are already focused on this precious child's brave parents who will make the decision to turn a tragedy into something beautiful...life.

Lily has been so very fragile over this past year and a half.  Since October her Protein Losing Enteropathy, and the steroids used to treat it, have been killing her.  Medically speaking, there is nothing left for them to do to help Lily.  If she continues down the path she is currently on, the PLE will eventually cause her lungs and pleural cavity to fill with fluid and she will drown to death.  When the Heart Transplant Team came to ask for our permission last Wednesday to bring Lily before the selection committee again, we said yes. 

We are terrified.  We are anxious.  We are hopeful.  

When presented with our two options for Lily, 

Jacques and I chose the option 

that offered hope.  

If we have learned anything in our lives so far,

it is that you must always choose hope.  

Hope always wins.

 

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

Filled to the Measure

 I am worn thin.  I am weary.  Watching Lily suffer, endlessly, has taken its toll on me.  I have been pulled in more directions lately emotionally and physically than I can even count.  And certainly  more than I can handle...alone.  At the end of a much needed chat with my sister Lori, she reminded me that the only thing to do during a time like this is to bury myself in the word.  To carve out time, every single day, between just the Lord and I.  To breathe in his promises and meditate on them.  

Ephesians 3:20-21 are perhaps two of my absolute favorite verses in the entire Bible.  "Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!"  But the gems buried directly before those verses, that I tend to skim through to get to my "favorites", were salve to my soul today.  

How grateful I am to know this love that surpasses knowledge!

"For this reason I kneel before the Father,

from whom every family in heaven and on earth derives its name

I pray that out of His glorious riches 

He may strengthen you with power through His spirit in your inner being, 

so that Christ may dwell in your hearts through faith.

And I pray that you,

being rooted and established in love, may have power

together with all the Lord's holy people,

to grasp how wide and long and high and deep

is the love of Christ,

and to know this love that surpasses knowledge -

that you may be filled to the measure

of all the fullness of God."

Ephesians 3:14-19

Catching some rays yesterday afternoon

 

Lily had a very rough day today.  She woke up feeling yucky, and it turns out that her sodium levels are very low again.  I feel like I am experiencing the worst case of deja vu, and I am quite certain that the Prednisone is making Lily hyponatremic just like the Budesonide steroid did.  Lily was given a couple saline boluses, and they held two doses of her diuretics.  I feel like the past week of working so hard to get the fluid off Lily has all been for not.  But I agree with the team that it is important to keep Lily safe from seizures, even if it means that she will be puffy again. 

As frustrated as I am.  As defeated as I feel, Lily continues to amaze me.  She always reminds me that no matter what, I must always choose HOPE.  This morning Lily gently wiped the tears that streamed down my face as I placed her in the wagon.  On our ride around the Heart and Kidney Unit, Lily sang, "God is faithful, God is faithful!"  

Yes Lily Grace, God is faithful...always.

 

There is a very important meeting scheduled tomorrow, Monday, here at the hospital to discuss our Lily Grace.  Jacques and I have prayed that God will make our decisions clear and our path for Lily known.  Please join us in praying for that miracle.

Our Love Story - B+

In order to get the full flavor of Lily's story, you really need to go back toward the beginning of this blog to see how desperately loved and wanted this child truly was from the moment I laid eyes on her.  Just so there is no confusion, the adoption agency that was advocating for Lily at the time, named her Juliana.  Check out the (semi) beginning of our love story here.

I can vividly remember wondering why in the world a family hadn't scooped up this precious little treasure.  Of course now that answer is clear as crystal - nobody chose her because she was OUR daughter.  Hundreds of families reviewed Lily's file, and the word "terminal" inevitably scared every single family away.  Ironically, that very same word had Jacques and I running toward her with reckless abandon.  We were both desperate to love this child for as long as God allows her little heart to beat.  I had never been so sure of anything in my entire life as I was that this little orphan girl thousands of miles away was our daughter. 

Fast forward to this week.  Lily has been in the hospital since the day before Thanksgiving.  She was admitted to the Cardiac Intensive Care Unit with Hyponatremia (low sodium).  What the cardiologists initially told us would be a relatively easy thing to fix, has eight weeks later turned into a tremendously complicated ordeal.  Lily has never done anything by the textbook, and as a matter of fact she has supplied her doctors with plenty of never seen before data to write their own textbook.

Last weekend Lily began decompensating rapidly.  Her oxygen levels dropped, she was short of breath, wouldn't walk, she stopped eating, and her hemoglobin and hematocrit were dangerously low.  Jacques donated blood, and Lily received his gift early last Sunday morning.

Papa's blood being transfused into Lily Grace

The blood transfusion initially seemed to help, but Lily's blood work quickly became concerning again.  It was determined that Lily's body is not making enough of its own red blood cells, and that she would need another blood transfusion.  When people are being evaluated or waiting for a heart transplant, it is very important to minimize the amount of blood donor antibodies that are introduced to their system.  Last year when Lily needed a blood transfusion, Jacques donated blood since I was pregnant with Addy Hope.  There are some antibodies that can put up red flags for transplant, and we know that Jacques does not have any of those.  Since Jacques was not able to donate blood for another 50 days, I got my chance to donate blood to Lily.  This morning, Lily Grace received my blood - her mommy's blood.

Mommy's blood being transfused into Lily Grace

I stand in awe of our great God.  The God who knit all of us together in our mother's wombs.  The God who knows how many hairs are on your head.  The God who created Jacques, Lily, and I with the exact same blood type for such a moment as this.  As difficult and gut wrenching as this journey is sometimes, I am absolutely breathless at the thought, and humbled that our adopted daughter has both my husband and my blood running through her veins right now. 

Only God.

Also, please take note of our blood type -

B+

You made all the delicate, inner parts of my body
 

and knit me together in my mother’s womb.
  

Thank you for making me so wonderfully complex!
  

Your workmanship is marvelous—how well I know it.
  

You watched me as I was being formed in utter seclusion, 


as I was woven together in the dark of the womb.
  

You saw me before I was born.
  

Every day of my life was recorded in your book.  


Every moment was laid out
 

before a single day had passed.
   

How precious are your thoughts about me, Oh God.
  

They cannot be numbered!  

Psalm 139:13-17