Whole Hearted

I'm a curious person.

I like to research and hunt and learn about things that I don't understand.

And while I should probably use authenticated books and seek out experts, I don't.

Wanna know my number one research method?


When we were starting the adoption process, I didn't read lots of books or check out agency sites.  I searched for blogs of people who were on the same path but farther along then us.

The official, 10 syllable definitions of things just don't mean much to me.  

I don't care about statistics or numbers or odds.

I want to know what the nitty gritty, day to day details of what it means to live something out.

And since I wasn't able to find many blogs documenting what is on our horizon, I thought, "maybe I should blog about it."

See, our big bellied, cheesy grin faced boy who is addicted to apples and balloons and appears to be perfectly healthy is actually walking around with only half a heart.

The technical name for what he has is Hypoplastic Left Heart Syndrome.

Which boils down to him missing the left side of his heart.  

The left ventricle usually carries the blood away from the heart to the body.

Babies who go undiagnosed don't survive more then a few hours after birth.  Gabriel was lucky and his was discovered before he was born.

He had his first open heart surgery, called the Norway Operation, right after birth and a second, the Glenn Shunt, at 3 months old.

There is a third surgery called the Fontan Procedure that completes the series.  The condition isn't curable without a total heart transplant, but the series of surgeries eases the burden on the heart and prolongs that big of a surgery.

Gabriel has had some issues with blood flowing the wrong way (back flow) so currently, he isn't a candidate for that third surgery.  We are waiting to see if the back flow corrects itself or if we will have to go another route.

It's a good thing chicks dig scars, cause dudes got some serious ones.

We got Gabe after he had healed up from the second surgery.  

Since then, we have gone every 3 months to the cardiologist and kept up with a heart medication regimen.

When he first came home, he was grey and underweight.

Since then he's turned a lovely shade of brown and, as you can see, is no longer underweight.

He tires faster then most kids his age and he breathes heavy all the time, but other then that you'd never know that he is missing half of a vital organ.

While his clinicals have been great, for the past year now he's had wonky blood pressure.

His arm gives a great reading, but his lower extremities are barely readable.

The doctor has been watching it with ECHOs every 3 months.

The last two ECHOs have not shown a cause for the weird blood pressure and the one he just had done last week brought up a new concern.

When your heart pumps, it's supposed to squeeze all the blood out.  Gabe's heart barely squeezes.  So in order to get enough blood to his body, his heart beats triple time to keep up.

The doctor called us last week and told us she has decided it's time to go in for a better look.

The Cardiologist is worried that the shunt, she called it an arch, is narrowing on one side and making his heart work triple time to get blood to his body.

Which wears the whole thing out.

So this Friday, little man will go in and have a heart catheterization.  He will be under anesthesia while they stick a tube up through a vein in his leg into his heart to get a better look.

If the arch has narrowed, they will inflate a tiny balloon to expand it.

If it hasn't narrowed, we will have to look at other options to give his little heart muscle a break.

I'm a little nervous, but I totally trust his cardiologist.

This is a procedure that he would have to have done before the third surgery, it's just a little earlier then we had planned.

I'll be honest, most days I completely forget he has a serious heart condition.

So hearing the doctor telling me all of this caught me a bit off guard.

The little guy is a trooper and I know he will be fine, but it is still hard to digest.

I kept looking from her to him and thinking, "is she really talking about this hunk of love on the table here?!?!"

But she was.  He's got a special heart.

So there you have it.

Our next adventure.

Learning to live whole heartedly, with only half a heart.


Amy said...

love my sweet little man. Half heart and all

Stephanie said...

I'll be sending warm thoughts your (and Gabe's) way. Your two little ones are just about the same age as mine. :)

Sarah said...

I'll be praying for you guys :)

Crystal said...

Praying for Gabe's surgery!

Kaia said...

I dreamt I met him the other night and said, "He's just as soft and chubby as he looks in pictures." Yeah, that was a first of dreaming of a blogger and a little creepy :P Praying for exceptional results!

MyLinda said...

I'll be praying!

kimmer said...

Our little Gabe really has the most beautiful spirit and I thank God every day for the miracle of his life being woven into all of ours! What a total joy he is! We are so blessed to have the doctors and nurses that are caring for him with so much knowledge. I am praying for him and for this surgery to find and fix...I know God will be holding him (and you and Andrew) close. See you soon! Love.