Once Upon A Prayer

Friday, November 29, 2013


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

Friday, November 22, 2013

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

Tuesday, November 19, 2013

When Lily grows up she wants to...

When Lily grows up, she wants to be a nurse!
And not just any nurse...
Nurse "Kerwie" to be exact.

During our initial meeting with the heart transplant team, the Cardiologist asked Lily what she wanted to be when she grows up.  Lily did not even have to think about this question, and immediately replied, "I want to be a nurse, and do surgeries."  

Each of us have that very special person in our lives that we desire to grow up to be.  Lily first met Nurse Kerry right around this time last year when Lily went inpatient for pleural effusions.  Nurse Kerry was new to the Heart and Kidney Unit, and was still in training at the time.  From day one, I could tell that Nurse Kerry's spunk and energy were contagious, and Lily was in such a good mood whenever she was around.  Lily's smiles were limited during that time as she had three sets of chest tubes and eventually needed an ng tube placed when she stopped eating.  Even at her sickest, Lily would ask when Nurse Kerry would be back to work.  A very special friendship bond had definitely been created.

Matching pig tails to make the empress smile!

Nurse Kerry is LilyStrong

The hospital magically transforms into a spa

Nurse Kerry is also quite the artist,
and a hospital stay is never complete without
a Hello Kitty on Lily's board

Over the summer Nurse Kerry asked Lily what she wanted to be
 when she grew up, and Lily told her, 
"I want to be YOU!"
Nurse Kerry may or no may not have almost cried :-)