Surgery tomorrow at 7am

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I absolutely can not wait to see this smile again!

Can you? It's contagious! 

And this sassy face?? Oh ya!

 She is readied up! Is that even a word? 

She has 3 IV's (they go bad quickly so better to get them while she is sedated) A picc line, her Art line and her IJ.  

                                               
                            We've been busy!

 Not the kind of busy we'd like to be, but ready we are!

Thank you for being patient today. Ivy and I waited patiently all day for surgery and found out around 5pm that it would not happen until tomorrow. A good nights rest for her surgeon was Gods plan all along. Mommy on the other hand had coffee at 4pm gearing up for the long night and might just be having trouble sleeping now. 

Thank you Abbey, Olivia, and Sophia for checking in on us every single day and loving our girls to pieces!! 

Thank you Annie Kate for your prayers today ~Fors God to makes Iby alls better berry soon!~
 Love you sweet girl!

Thank you for being on your knees for our girl today, regardless of the time and day, God hears our prayers and knows our hearts! 


Thank you to the absolutely amazing 
Minnesota  Team of Tweens 
that some how raised 400 dollars in the rain, in the dark, out of nowhere.... for Ivy today!  A total surprise to me and everyone I think!  The heart these girls have is just the most beautiful thing!!

Thank you Jamie, who I have never even met, who posted today that she is sewing her way to Valentines Day (our heart baby's Forever Family Day) and donating 25% to Ivy and her very expensive Air Ambulance ride to Boston! What a blessing you are Jamie!! https://www.facebook.com/KenzieNoelleDesigns?ref=stream

And thank you, to all of you, for praying circles around our little girl TOMORROW AT 7AM EST
All day, any time, let us flood the gates of heaven once again. 

Let us NOT be weary, we are full of JOY
Ivy has another chance, and for that we give thanks!!!

Put your shirts on TEAM! 

We've got to get this little girl healthy. 
She wants to play in the sand, chase a puppy, swing on a swing, ride a trike, meet Mickey Mouse, jump on a trampoline, make a mess when mommy's not looking, and all the other things that toddlers do! Another chance! Hope! Joy! Life!

Dear Lord,
This isn't easy, but tomorrow I must entrust my Hangzhou Princess in to the loving hands of her Surgeon once again 
Guide his hands please 
Fix every problem, address even the smallest concerns and let Ivy go on and then off of bypass easily 
Give me the strength and the patience to wait, and wait 
Give me the grace to trust 
Bring Ivy back to us healed, stronger than ever, alive and ready to tell her story 
We thank you for using us in ways we never imagined 
We thank you for using her in ways that are utterly amazing 
Thank you for equipping us with the strength and the armor to get through all of this
We are tired now 
We are ready to rest 
We love you always
Amen Pin It

January 6, 2013

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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

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Our Hope

Pin It It is my prayer that today is the start of the finish of this journey to Boston for Ivy Joy. While we are still in the critical stage, 48 hours post op, Ivy is doing well and looking good!

She is being weaned from the ventilator little by little with the hopes of getting her off of it today. 

The surgery yesterday was long and yet uneventful! She went on bypass beautifully, she opened easily,  and she came off bypass smoothly. There was some trouble with her rhythms so the pacemaker team came up and they worked until they figured out the problem. She is not even using the external pacing wires, her permanent pacemaker is doing all the work already. 

Dr Baird was able to get a 19mm mechanical valve in her! That is Huge!! He said you almost never could get a valve that size in a child her size because the extra flow could cause some partial heart block. Well..... Ivy already has complete heart block and a Rolls Royce Pacemaker to assist with that so they didn't need to worry about heart block issues. She also has been in heart failure so long that her heart is enlarged thus giving them another small bonus to using the large valve. 

Our doctor said that he does not think Ivy is going to be a very big adult and so this valve will last her a very very long time. At least into her 20's! Possibly longer! 

She will be on Heprin forever now. She'll wear a little medical alert bracelet and we will add the Heprin to the list on it. She should finally have ENERGY due to this new valve. Doc thinks her eating will pick right back up and her recovery will be easier. 

I hope to have news that she is awake the next time I post! And I hope she is off everything!! Meaning no cpap, no bipap, no oxygen!! No feeding tube!! Ok ok one thing at a time! 

Thank you for continuing to lift this precious child in prayer! 

Please Lord, let this be done, no more surprises!! 

Mama is all out of feathers in her hat! And Ivy is tired! 

And yet.... You all know there is nothing I would not do to get this child home and well. 

Life is such a gift! 

Hug your entire family, every single member, a lot tighter and a lot longer this week! I can't wait to hug all of mine!

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