Once Upon A Prayer

Tuesday, March 18, 2014

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

Monday, March 17, 2014

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.



Friday, January 17, 2014

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

Monday, December 23, 2013

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

Monday, December 16, 2013

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



 

Monday, December 2, 2013

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

Friday, November 29, 2013

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