American Heart Association's 2016 "Face of Heart"

Life is a Gift

Jacques and I received an email from Kyla, the China Operations Director of the International China Concern, who was helping to care for LiHua prior to her passing.  In her message she said, "Her caregivers are heart broken, and they are fearful.  Fear is common around death here, and something we battle in our high needs areas.  The caregivers are still taking care of a palliative baby that will pass any time.  We need to pray that they can embrace him with courage, and will not be too scared to face him and love him."   

Kyla is the brave woman who fought to show the Orphanage staff that this tiny baby had worth, and that a family who desperately wanted her could be found.  And sure enough, one was found - our family!  She asked Jacques and I to write a tribute about LiHua that would be translated and read at her memorial service, which is scheduled for Wednesday, October 14th at 8:30am (China Time). We decided that the best message we could send was one of hope, and where our hope comes from. 

Below is what we sent...

 



 

Dear ICC and Hengyang Orphanage staff,

Life is a gift. Every life is a gift. Every child born into this world is a gift. The tragedy is, that not every child is born with the same chance at a great life. Some are born into wealth and have every worldly opportunity to succeed. Others are born into dire poverty and may never have the opportunity to break out of it. Some children are born healthy and vibrant, thriving from day one. Other children are born with medical challenges they may never overcome. Some children are born into homes with parents who love and nurture them. Others are left on doorsteps or dumpsters, discarded by parents who don’t have the means to raise them.

But regardless of the circumstance we are born into, every child is a gift. Every baby matters. Every life has meaning. Li Hua was born into circumstances that broke our hearts. She was born poor and sick, and left by her parents who knew they didn’t have the means or ability to care for such a sick child.  Her parents most obviously loved her and left her when they didn’t know what else to do…they even left provision for her.  That means that everyday of her life until she was abandoned she was swaddled and loved by her birthmother.  And on the day that she was found, God in His care, brought her to a home where people would love her and care for her.  She did not suffer alone.  This brings us, her parents, great comfort and joy. Thank you for the love you showed our precious baby girl.

We fell in love with Hua when we first saw her picture and heard her story. She was lovable, and we began to dream! What would it be like if she came into our family? What would it be like if she had brothers and sisters to love and play with and fight with over toys?  How would she respond to the affection of a Papa and Mommy? What if loving doctors got her the medical care she needed? And the more we dreamed, the more we wanted her to be our daughter. So we made the relatively easy decision – let’s bring her home. We couldn’t wait to see the difference love could make!

This doesn’t make sense to a lot of people. I know this because people say to us all the time, ‘Why?” “Why bring home a child you know may die?” Or, “Why spend all that time and money when there are no guarantees that things will work out”. I’ll tell you why. Love is why!

Love is the most powerful force in the universe. I know this because I am the recipient of the greatest act of love ever displayed. The Bible teaches us that “God showed His great love for us by sending His son Jesus Christ to die for us while we were still sinners” (Romans 5:8). In other words, just like our precious Hua, we were a complete mess.  She was physically sick. We were spiritually sick. Every one of us have done wrong things, said wrong things, and thought wrong things. Every single one of us. The bible calls those wrong things we do “sin”. And sin is a sickness – a spiritual sickness. And while God could have looked at the mess that we were and said, “Why bother with them”, he didn’t. Instead, he sent his son Jesus to die for us. The death of Jesus paid the price for our sin. In other words, God took the punishment we deserved for our sin for us. In so doing, he took our sin away. He healed our spiritual sickness! While we were sick with sin; while we were a mess, he died for us. That is the greatest act of love in the history of the universe. He took our sickness so that we could be well. Now that’s love, and without His love, we would still be a mess!

As people that have received God’s great love, nothing brings us more joy than to bring that same love to everyone – no matter their age or race or circumstance. Love had made the greatest difference of all in our lives. And so we believe love can make the greatest difference of all in the lives of others. Because God showed us His love when we were helpless and weak, we have a heart to bring love to children who are helpless and weak. We have watched with our own eyes the difference that love can make in the three children we adopted already from China – Lily, Mackenzie and Thaddaeus. They are thriving because a family cared enough to risk everything to give them a home. It’s the same thing God did for us. He risked everything to give us a home in His kingdom, and through His love, we are thriving!

We wanted so badly to see Hua have the opportunity to thrive. And it breaks our hearts that she is no longer with us. But we do not regret – not for a second - making her our own! We do not blame God for her death. God loves her, and she will have a home with Him forever.  We live in a world of sickness and pain, and we understand that death is a reality. Death is a certainty for everyone, whether young or old. Death is certain, but it is not final. And one day, we will get to meet her. And on that day, she will get to meet the family that loved her so much that they would go through anything to have her.  And thanks to the God who said, “I will do anything to have us”, we can look forward to that reunion in Heaven! 

You see, there is nothing to fear in death. Because death is not the end! It is the beginning of a life free of pain and suffering and turmoil. Revelation 21:4 tells us so. Jesus says, “On that day, I will wipe every tear from their eyes. There will be no more death or mourning or crying or pain for the old order of things has passed away”. You see; every human who loves God and follows His son, Jesus, is guaranteed that no matter the circumstances they were born into, this promise of new life is for them.

And while we are living in this sin filled, sickness filled, tragedy filled world in the meantime, we are going to bring as much love and hope and joy as we can. Because that is what our God did and does for us.

We are heartbroken that we won’t get to bring sweet Hua home, but we are filled with joy knowing she is not suffering now, and knowing a new life is what awaits her. Thank you so much to all of you who loved her and showed her that there is good all around – even in the middle of the trials! It is our hope and prayer that you will find hope and joy and peace in the love that God has in Jesus Christ, for you!

Jacques and Emily Rancourt

 

***Please consider spreading HOPE to the other children in the care of the International China Concern Program in memoriam of our sweet LiHua.  There are many ways that you can  donate to help save lives: http://www.chinaconcern.org/donate

A Million Times YES...LiHua

It is with an extremely heavy heart, and eyes that have been streaming tears all weekend that I share this news with you. Our adoption agency called on Friday night at 9:30pm to tell us that our sweet baby LiHua passed away. Yes, you read that correctly...Jacques and I have been expeditiously working behind the scenes to bring this sweet angel home. Her death was sudden and unexpected, and I ask that you pray for the people who loved and cared for her until she took her last breath. This must be so very difficult for them.

We find comfort in knowing that this precious child is now free from pain and broken flesh, and she is resting in the arms of our Savior.

Redeemed. Adopted. Safe.

Although our hearts physically hurt, we are still thankful. Li Hua's short life impacted our family in a huge way. She made me aware that within 10 seconds of reading an advocate's plea for a family to step out on faith to bring home a dying child who needed a liver transplant that Jacques and I would say "Yes Lord, send us!" I am thankful that Chinese officials read our letter of intent to adopt this ailing baby, and then suddenly realized that she was wanted, treasured, and worthy. I am thankful that when I came to all of you with a need of expensive, specialized formula and vitamins to help sustain her life, you all rallied and a provision beyond my wildest dream was collected (I assure you that the formula will still be delivered and used for other babies in need).

HOPE is never in vain because it originates with Him, and He never fails. I am thankful tonight even through this hard eucharisteo. We would do it all over again in a heartbeat. Every life is precious.  Every single last one. Our family will continue to say yes. A million times YES!

Can you hear me? He's my son...

In about an hour, Thaddaeus will be taken down for his first open heart surgery.  This is the surgery that most children who are born with half of a heart have as an infant.  The first thing that the surgeon said to me yesterday was that Thadd is WAY WAY WAY WAY WAY more complicated than Lily Grace.   I asked Dr. Jonas if that is why the surgeons in China would not operate on him - because he was so complex.  He told me that Thadd is too complicated for anyone, and that he has a very unfortunate combination of congenital heart defects.  We are so thankful that the surgical team here at CNMC is willing to try to bring our little dude some relief so that he can breathe easier.  Of course our HOPE, is that this surgery will eventually open the door to more surgical options for our son.

Thaddaeus' heart has two Superior Vena Cavas.  He has Double Outlet Right Ventricle (DORV) where the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle.  His pulmonary valve is completely closed, and his body has developed such a complex network of collateral vessels to oxygenate himself that his pulmonary arteries are not even being used.  As a matter of fact, where they typically like to place the BT Shunt that Thadd will receive today, is smack dab where he has two huge collateral vessels.  The team will need to improvise where they place his shunt, and it will not be as effective as it could be.  The biggest risk for an older child receiving a BT Shunt are that they will develop a blood clot in the shunt, or that the shunt will cause him to be oxygenated.  Either one of these factors could require a trip back to the Operating Room, so the team in the Cardiac Intensive Care Unit will be watching him very closely.  And so will Mommy.

I am so thankful that the Almighty God of our universe,

who created all of Thadd's intricate anatomy,

is the same God who does hear our prayers.

He is sovereign...He is Faithful.

And only in Him do we find our HOPE!

Don't be afraid, for I am with you. 

Don't be discouraged, for I am your God. 

I will strengthen you and help you. 

I will hold you up with my victorious right hand!
Isaiah 41:10

Eight months ago today...

Eight months ago today, 

a Hero's heart was placed inside of Lily Grace.

"Thank you"

will never be enough.

He gives power to the weak, 

And to those who have no might He increases strength. 

Isaiah 40:29

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

Do Not Worry About Anything...

Many of you follow Lily's journey on the "Praying for Lily" Facebook page.  Our blog has been greatly neglected since it tends to be easier for me to give quick updates on Facebook.  To get everyone up to speed, Lily was admitted to the Cardiac Intensive Care Unit the day before Thanksgiving with a dangerously low sodium.  With the assistance of IV fluids, the team was able to elevate Lily's sodium count, and she was transferred to the Heart and Kidney Unit.  Over the past several weeks, Lily's sodium has dropped dangerously low at times causing two instances of seizures.  The doctors have discovered that the only way to keep Lily's sodium within a safe range is to have her on an IV sodium drip with four doses of sodium chloride tablets administered throughout the day.  She is also on a tight fluid restriction, which leaves her horribly thirsty all the time.  Initially it was thought that this acute Hyponatremia (low sodium) was due to one of the diuretics that Lily was on.  However, that drug was stopped weeks ago, and the problem still persists.  Lily's fragile body has become very puffy with all of the IV sodium, and the team shares in my frustration as the extra fluid causes respiratory distress and makes Lily feel like she is constantly choking.

The Nephrology team feels that the only thing left to try is a drug that is FDA approved for adults called Tolvaptan.  The drug has only been used on a small pediatric population due to the fact that this type of hyponatremia typically only affects children with failed single ventricle anatomy.  Jacques and I were given a copy of the study that was done on the pediatric patients, and we both read through it thoroughly.  I was given the opportunity to discuss our questions with the Cardiology and Nephrology teams.  The hope is that the drug will get rid of the free fluid that has accumulated in Lily's body.  This free fluid has caused her sodium to become diluted, and therefore has her trapped in a vicious cycle of not enough sodium and too much fluid retention.  This drug is very high risk since it can cause the patient's sodium levels to increase dramatically, which would cause brain swelling.  Lily will be in the Cardiac Intensive Care Unit, and will have blood draws every two hours to closely monitor the sodium increase.  Also, because of Lily's clotting disorder there is a lot of concern as to how her body will react to this medication.  We have seen Lily's Coumadin levels jump all over the place over the past few weeks as her sodium levels dropped and increased.  A quick rise in sodium could cause Lily's blood to become too thin, which could put her at risk of a brain bleed or stroke.  I was told this morning that we should have an answer this afternoon from the hospital committee as to whether or not they will approve the use of this drug for Lily.  If they do, it will be sent over from the Washington Hospital Center, and she can begin the treatment tomorrow.  The discouraging thing is that there is no guarantee that this drug will even work.  The hormone that the drug acts upon is not affected according to Lily's bloodwork, but we have been told that sometimes the bloodwork is not a good indicator.  Lily cannot continue down her current path, and everyone agrees that we need to try something.

Jacques and I have bathed this treatment plan decision in countless hours of prayer.  It's impossible to know if we are making the right decision, but we are painfully aware that we need to try something.  Please join us in praying for God to use this medication to stabilize Lily's sodium levels so we can "get outta here"!

Do not worry about anything; instead pray about everything.

Tell God what you need,

and thank Him for all He has done.

Philippians 4:6

Youre Grace Abounds in Deepest Waters

Lily Grace and I have had a lot of special moments together over the past month of this hospitalization.  Anyone who knows Lily will agree that she is an old soul.  A child wise well beyond her four years.  Lily is often asked how many brothers and sisters she has.  She always responds four.  Once I made the mistake of correcting her, and she went on to name them all...including Addy Hope.  Lily talks about "our baby" all of the time, and tells me that she cannot wait to hold her baby sister in heaven. 

Jacques and I brought Dryden and Soleil to the funeral home to meet their baby sister the afternoon after she was born.  They were both adamant that they needed to see her and touch her.  At the time we felt that Mackenzie and Lily were too young to grasp the concept of what had transpired the day before.  Hindsight is 20/20, and I now believe that this decision has left a lot of loose ends for Lily. 

Lily loves when I put photographs to music, and she could not understand why I haven't done this yet for Addy Hope.  This video, is a joint effort between Lily and I.  Together, we tried to memorialize the 39 weeks Addy spent with us here on earth. 

When you go through deep waters, I will be with you

When you go through rivers of difficulty

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God.

Isiah 43 2-3

 

Lily - I've Loved You For A Thousand Years

Lily Grace has been asking me during the past couple hospital stays to make her another video.  I told her I was waiting to find the PERFECT song to make a video featuring just her.  I finally found that song, and worked on the video yesterday.  Tonight we sat together before bed, and watched the video together several times.  She loves it!

Lily girl, I have "loved you for a thousand years, 

and I will love you for a thousand more".

I love you a thousand,

Mommy

Music by: Christina Perri - A Thousand Years

Hyponatremia

Jacques and I make a fantastic team!  Jacques is determined to not allow Lily to become a "cardiac cripple", and he typically takes on the "suck it up princess" role.  I, on the other hand, am very in tune to Lily, and can often be found carrying her up and down the stairs at home when I feel like she's at her limit...when Papa is not looking of course!  On Monday while I was at work, Jacques texted me several times expressing that something was wrong with Lily but he couldn't put his finger on it.  Lily wouldn't play, and couldn't walk without bursting into tears.  Although I was a bit concerned, I was the one who thought we should give it one more day in case she was just recovering from hospital psychosis since she was just discharged on Saturday night.  Jacques texted me on Tuesday and told me to call Lily's cardiologist.  The text said, "Never have I seen Lily this lethargic or lackluser.  It seems like it takes a lot of energy for her to simply smile.  Please call Dr. Frank now."  

Bright and early Wednesday morning Lily and I headed to the Cardiac Clinic in Washington DC.  The team did a full work up on Lily, and we were there the entire day.  At 4pm, the results of Lily's blood panel came back and I was informed that Lily had Hyponatremia.  Hyponatremia is an electrolyte disturbance in which the sodium in the plasma becomes lower than normal.  Lily's sodium level was so low and dangerous that she was immediately admitted to the Cardiac Intensive Care Unit.   When sodium levels in the blood become excessively low, excess water enters the brain cells and the cells swell.  The result can be seizures, coma, and even death.

An IV was placed, and a sodium drip was started.  The doctors checked Lily's sodium levels regularly since a rapid increase in sodium can be just as dangerous.  Over the next 24 hours Lily's levels went up and down, but clearly she was feeling MUCH better!

Nurse Lee gave Lily his Magical Name Badge that opens all of the 

doors on the CICU.  Here Lily is checking out the

Equipment Storage Room!

Since this was an impromptu hospital stay, 

I didn't have my bag of tricks with me.

Have no fear, Nurse Lee is here!!!

Arterial Line, Med Line, Heparin, and Morphine 

stickers can be oh so much fun!

Our family was together in the CICU for Thanksgiving!  

Here the "bigs" were treating Mackenzie.

They gave her oxygen, placed a 'straw' IV, and bandaged her shot.

I am so glad that all of my girls have Papa's GREAT

imagination...these girl's will go places...mark my words!

Will the real Lily Grace please stand up?

Many people have asked me how this hyponatremia happened to Lily.  The doctors believe it is a combination of the massive amounts of diuretics that Lily needs in order to battle the fluid from her Protein Losing Enteropathy, and the fact that she had the "common cold" over the past two weeks.  In order to get Lily's sodium up, the team decided to hold her Lasix, one of her three diuretics.  Unfortunately, Lily is now supper puffy and retaining fluids.  She received a dose of IV Lasix last night, and a dose of IV Diuril today but she still remains very puffy.  Lily has been transferred to the Heart and Kidney Unit, where they are trying to find a balance between keeping her sodium up and keeping her puffiness down.  This is proving to be very difficult right now.

So, in the meantime, Lily has eaten 8, yes EIGHT, bags of these

chips since Wednesday night.  I'm a bit jealous.

My heart has been heavy the past few days as I desperately longed to not spend another Thanksgiving in the hospital.  My focus has been on how fortunate we are to have heeded Jacques' gut feeling since this could have ended a whole lot worse.  I pray that God uses these difficult situations for me to learn the secret of being content in any and every situation.

I know what it is to be in need, 

and I know what it is to have plenty. 

I have learned the secret of being content 

in any and every situation, 

whether well fed or hungry, 

whether living in plenty or in want.

Philippians 4:12

Love is worth the RISK

Lily has been in the hospital since last Sunday.  We were here to bridge her off Coumadin and onto IV Heparin so that she could have a heart catheterization on Wednesday.  The heart catheterization is needed to obtain information for the heart transplant team to determine if Lily is a good candidate to be listed for a new "hero heart".

Lily has had cold-like symptoms for the past two months so we didn't think much of it, but her pre-surgery bloodwork came back with a high white blood cell count of 26.  When the labs were repeated on Tuesday her count was only down to 22 so the decision was made to cancel her heart catheterization.  A viral panel also showed that Lily had a rhinovirus (common cold).  Her weight increased an unbelievable 1 kg (2.2 lbs) overnight.  Our little princess was super puffy, and definitely did not feel well.

 

 The decision was made to put Lily back on her Coumadin in order to send her home for about a week before we would check back in to attempt the heart catheterization again.  The transplant team tried to maximize her time here so they have been collecting various vials of blood each day that are needed for her heart transplant evaluation.  Lily also needed a dental clearance so she had her very first dentist appointment.  Please don't judge, we've been slightly busy dealing with life threatening conditions instead of her teeth :-)  Lily will tell you that she did not like this experience, and ended up puking all over her nurse and dentist.  

The good news is that her teeth look great!  

The plan was to send Lily home today "if" her blood levels were trending upward.  Unfortunately, in true Lily fashion, her blood levels went down instead of up and she spent her entire morning puking and dry heaving.  So needless to say, we are still here!  

The heart transplant cardiologist came to check on Lily this morning.  She told me that at the morning team meeting, the cardiologist who reviewed Lily's medical file while she was still in China told her that he 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.  And now she needs a heart transplant that China never would have listed her for.  But, what Lily really needed 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 a year and a half “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 18 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.

Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.  Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing, because to this you were called so that you may inherit a blessing.  

1 Peter 3:8-9