The Big T

Gabriel has a heart defect called Hypoplastic Left Heart Syndrome.  

You can read his story by clicking HERE.

A couple weeks ago, Gabriel had his 2 month heart check.

I haven't blogged an update because I wasn't quite sure how I wanted to relay it all.

First off, the dude's doing fantastic.

His cardiologist continues to be blown away by how well he's doing.  No blueness, great pressures, and he's keeping up with other kids without much exhaustion.  

His oxygen levels were at 85, the highest they've ever been.

None of that surprised me.  If I didn't see that gorgeous scar of his everyday, I wouldn't think there was anything going on under the surface.

What caught me off guard was when she started rambling off things like The Heart Failure Center, getting on The List, and then she said it. 

The T Word.

I've known that a heart transplant was most likely in Gabriel's future.  It's the only way to keep his heart from plain running out of energy.  It can only do the work of a full heart for so long.

But it was supposed to be much, much farther down the road.

Like 30 years.

We are supposed to be thinking about the Fontan Procedure that would complete the series of heart surgeries he's already had.  

That was supposed to buy us lots and lots of time before we had to start thinking about transplants.

After a brigade of questions, I understood that, while he is doing extremely well, the fact remains that his heart just won't properly pump.  His function is too low to risk putting him on a bypass machine and stopping his heart to do the 3rd procedure.  The Doctor said it's risky for a baby with good function.  A heart like Gabe's would find it near impossible to get pumping properly again.

Once she spotted the worry setting into my face she was quick to emphasize that we are not anywhere near planning our big adventure in transplants.  

He's too healthy.  There's no way he would get on a transplant list now.

So we wait.

For heart failure.

Which is an unbearable thought.  I can't even go there.  Not yet.

My goal?

Keep this little man as healthy as possible for as long as possible.

Give medicine a chance to evolve.  Give his body time to grow.  

Give God a chance to show up.

We added Cravedilol to his meds and are hoping that this gives his heart a little boost to help get it pumping better.

I'm worried and scared and kinda hoping I heard everything wrong.

But I'm also celebrating the fact that the child is doing so, so great.  

And would you believe they told me he needs to put on more weight?!?!

So long Almond Milk.  Welcome back Whole Milk.

Looks like this Buddha Belly is here to stay.