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