January 6, 2013

My darling Ivy. I sat here and watched you
as you slept in your hospital bed tonight 
for at least an hour straight. 
Confused by what is happening, 
worried beyond measure, 
without words to share with all the people that have been praying for you. And during 
this quiet time, I was reminded, 
God's love is being manifested 
in and through this time of suffering. 
And just as He promises you, 
God is going to take it away. 
We may not know when, but He 
is going to take it away and He 
is going to reward you in a way 
that will make all of your suffering 
seem as though it was not suffering. 
And He is going to give you everything 
you need for ever and ever—
millions and millions of years—
and you are going to be as happy 
as you can possibly be.

Mommy finds comfort in Revelation 21, 
"All crying and mourning and pain 
will be no more, for the former things 
have passed away." 
Mommy finds hope in your eyes, in your 
smile, in your heart!

As I watched you sleep tonight, 
I was thinking about how extra 
special you are. The way you talk, 
your little voice, 
your sweet nature 
and concern for everyone. 
You captivate everyone 
who meets you and you leave 
your handprints on their hearts. 
It reminded me how God builds amazing 
character, faith, love and depth out of suffering.  Some of the deepest, wisest, 
most loving, most patient, most 
ministering people I know, are 
the people who have walked the toughest journeys and suffered through 
the hardest times.
And so I am ending my post to you 
with a giant I LOVE YOU FOREVER! 
And my continued promise, 
to go to the ends of the earth 
for you and whatever your journey 
has in store. I will never 
leave your side, daddy and I 
will never leave your side, 
we love you to the depths 
of the universe and every 
moment with you is a moment 
we could never have had 
without our Ivy Joy! 

Friends our little peanut has been in the hospital since 

Thursday. We were watching her closely since the 

previous weekend as she was seeming to be a little 

puffy and had a bit of a cough. There was a lot 

of sleeping going on and it appeared that she had 

perhaps caught a little virus. She was eating and 

drinking and all of that, but she was tired and 

coughing a little. On Thursday morning she was 

sitting in her highchair and she kind of arched her back 

and stayed in that position. 

I pulled her out of her highchair and noticed she 

did not change her position and her eyes were looking 

to one side. I called her name over and over and she 

didn't respond. I told Cassidy to call 911, she was 

having a seizure. This was my first experience with 

a seizure and by the Grace of God it was very short, 

about 15 seconds total. 

While on the phone with the dispatcher she straightened 

right up and asked to go for a walk in her stroller! 

I still asked them to come out and they did. 

All was checked out, she looked normal, 

they left and we made calls to the cardiologist 

and her pediatrician. I suspected it was related 

to her electrolytes. It is not uncommon for kids 

on diuretics to be depleted of them, of potassium 

and sodium. Once we got in with the pediatrician 

it was decided to take Ivy straight to the ICU 

to be admitted and get some labs drawn. 

She did come back having low sodium so it is being 

suspected that this is what caused the little seizure. 

But in the mean time it was also suspected that 

this little cough that is getting progressively worse 

is being caused by blood backing up in to the lungs. 

And this would be really bad. And her echo revealed 

that her pressures are dangerously high. 

And something is going on with the right side 

of her heart as it has almost no squeeze... 

And so with great hesitation in typing this 

because it makes it harder to deny this reality I so 

want to wish is just a bad dream, 

Ivy will be having a Heart Catheterization on Monday 

to take a look around and see what exactly 

is going on with her heart. We know there is a 

problem but we don't know what. 

I asked the nurse tonight if there could be a problem 

with a mechanical valve, could you 

have regurge with a mechanical valve, 

I thought they were fool proof? She said yes, 

its not the norm, but it can happen. 

Seems to always be the case for my little love, 

not the norm but it can happen and then it does. 

It could also be her tricuspid valve. 

Both these valves are on the left and control 

the right side.. I don't know, Im going only off of 

small tidbits that are being thrown around 

for the time being. For those wondering, yes, 

I have been in very close 

communication with our Boston team 

since coming home and they are aware of everything 

that is going on with Ivy.  If we need to take 

next steps, those steps will indeed be taken

back in Boston.

So the facts I have are that she is very sick, 

she has a gray color.  Her face is very sunk 

in tonight but she still has significant 

swelling in her legs, feet, and belly. 

We know its the right side of her heart and 

we know her pressures are dangerously high. 

We know something is wrong and we 

know we need prayers without ceasing once again.  

Our little girl has been through enough, 

she needs a break, she is tired! She is exhausted! 

Please share our request. Please ask others to pray. 

On Blogs, Facebook, twitter, instagram, 

prayer circles, who ever you feel led to share it with! 

Please please please, storm the 

gates of heaven on Ivy's behalf, that she would be able to 

stop this constant suffering and 

pain and sorrow would be no more! 

Thank you