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
pain and sorrow would be no more!
Thank you
