*there's his surgiversary

Or is it his heartaversary?

I think every day is a heartaversary so we will go with the other name.

Sometimes I write blog posts ahead of time and save them to publish later. I wrote one for Will's surgiversary months ago that sounded fairly sad. I think some grief is to be expected. But it hit me one day that this was a time to celebrate!

So then what? A party wasn't really practical. But we COULD share a yummy dessert with some friends! Taking full advantage of an excuse to eat something really bad for me, I became pretty obsessed with the idea of getting heart shaped red velvet whoopie pies. (Still a genius idea if you ask me.) But that proved to be too difficult since our local bakery had never heard of them. I'm keeping that as a goal for the future.

image of ingeniousness courtesy of cambrookefoods.com

We ended up with these delicious cuties:

 

 

Now for the original post.
This time last year we were taking videos of Will in his hospital room. Just in case it was our last time with him. Hoping for the best and preparing for the worst.

 

When surgery was over, we didn't want people gawking at pictures of Will not looking his best. If it is possible to look perfect and awful at the same time, he did. I asked other heart moms if they showed anyone pictures of their child after surgery. I got all kinds of responses: some never did, some did but people got upset with them, and some didn't think it was a big deal at all. Now that we know he is all fixed up, it seems like the time to share our pictures. Don't look at them if you prefer.

 

A few days after surgery (minus some tubes) when the fluid was at its worst.

I hope that comparing those pictures with the one below will help us remember that there is hope when life seems bleak.

Will at age 1

I don't get queasy in hospitals and I can usually handle medical stuff. We were shown pictures of what to expect right after surgery. I think that helped it not be such a shock.When we got to see him after surgery in his PCCU room, the nurse explained all of the equipment and medicines and I was fine until she said "This is the chest tube" and my eyes followed it to the floor. Chest tubes drain excess fluid out of the body. It went from the middle of his tummy all the way to the floor into a box to measure what collects there. At that point my knees got weak and I had to sit down. I've never experienced anything like that before or since. It wasn't because it was gross, but I think it must have been a symbol of how fragile he was. It didn't help that my mind magnified it to the point that I was imagining it much larger than its actual size. That tube was my least favorite thing about the PCCU.

Will's surgery day was memorable and life changing. We hope he never has to do that again.

To my son,
I write this as I wonder,
Will you ask someday?
Why do I have this scar mom?
Did God make me this way?
What will happen to me?
What does my future hold?
Will I hold my own children?
Then live until I’m old?
I think about your future,
Imagining what lies ahead,
Perhaps I need to concentrate,
On present things instead.
The present:
Right now you are enjoying life,
A typical mischievous boy,
You make us laugh…yes everyday,
And fill our hearts with joy.
And people often ask me,
So he’s all better right?
His heart is fixed, he seems just fine,
His future’s looking bright.
Yes, “He’s doing well”, I say,
I hope things stay this way,
I still fear for his future,
And every night I pray…
“Give me yet another day,
Keep my child strong,
I do not want to lose him Lord,
Please let his life be long.
Thank you…
Thank you Lord, for showing me,
What just one child can do,
I marvel at his courage,
And the trials he’s been through,
Thanks for your compassion
(And need I say it?…grace)
You’ve led me through each valley,
And you’ve brought me to this place.
A place where I’m not angry,
And it’s easier to see,
That I was not the person,
That you wanted me to be.
Thank you for the trials Lord,
They’ve taught me how to give,
Thank you for my child Lord,
He’s shown me how to live.
Did God make you this way?
I’ve asked myself this question,
A thousand times before,
Then it became a question that,
I just could not ignore.
God, He made you perfect,
Bestowing you with gifts to share,
God made you with his own hands,
Then numbered every hair.
He saw no imperfection,
Or heart…all rearranged,
He saw you…his well loved child,
And then he saw…lives changed.
The future…
The future is no place to live,
And neither is the past,
The present should be cherished,
As it truly goes too fast,
I don’t know what your future holds,
Or what we’ll have to face,
I know who holds us through each storm,
I know we lean on grace.
I know that life’s not always fair,
I know God has a plan,
I know He gives us strength and hope,
I know, he says…”You can”.
I write this as I wonder,
Will you ask me why?
Will you someday understand,
Just why we had to try?
Know, how very much your loved,
(Through every storm and strife)
Know, I wanted you to have,
A chance… to live your life.
~ by Stephanie Husted

One last thing...a major part of Will's OHS was the closing of a hole between two heart chambers. To listen to what a heartbeat with a VSD sounds like before repair, go to this link. Scroll to the bottom and click on Ventricular Septal Defect. Not the typical thump-thump pause thump-thump we're used to is it?