3.22.2012

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.

10 comments:

Melissa said...

He is such a cutie! By far the healthiest looking kid with HLHS I have ever seen! He is thriving in your loving family! Enjoy!

kimmer said...

He is the sweetest little guy!!! I just know that between you and Andrew taking excellent care of him and God watching over him...things are going to continue to work out well for him. Whatever comes our way...we will handle each step together. So much love this little boy!!

Shelley Q said...

I will be praying for you and your family. When our Lord restores, he doesn't do it in part and parcel. He has started a work in your sweet boys life and will see it through, in Jesus' name! I love your blog and get so much encouragement from it. I am amazed at how light-hearted and fun you are despite the amazing trials you face. Your are shining light to women who so need this example of gentle motherly love.

Shelley Q said...

I will be praying for you and your family. When our Lord restores, he doesn't do it in part and parcel. He has started a work in your sweet boys life and will see it through, in Jesus' name! I love your blog and get so much encouragement from it. I am amazed at how light-hearted and fun you are despite the amazing trials you face. Your are shining light to women who so need this example of gentle motherly love.

amillioncanaries said...

Nicole - I am in tears reading this. My middle child, Layla, was born with a heart defect. When she was diagnosed (still in utero), they thought it might be HLHS. I of course googled it and scared myself to death. Hers wound up being a lesser defect, coarctation of the aorta, and was fully repaired in surgery the day after she was born. It's crazy that you are living with Gabe the life that I thought I was going to live with my Layla. All that to say, we should chat about this. We have heart babies!! God bless you and Gabe, and I pray He does show up in a big way. Let's avoid that T word.

Coastalpines said...

God bless this beautiful child. Your family is is my thoughts and prayers!

Tristan said...

keeping him in my prayers!
he is such a doll!

Kameron said...

You guys were put into his life for a reason. He is able to thrive and get the care that he needs. I hope he can hold out as long as possible for a transplant, but I will pray for your family. That is such a scary thought.

bri said...

Praying and believing with you for a wonderful outcome! God is by far the BEST surgeon and the BEST medicine your sweet baby will ever need and you feed him that daily!

Cristi said...

I visited your blog several times before I realized you were a fellow heart mom.

My youngest daughter has a lot of friends with HLHS. You see, she was three when she was in the hospital waiting for a donor heart. All that spring, she played with friends her age that were recovering from their Fontan procedure. It was a weird mixture of tea parties, music playgroups, IV pumps, and oxygen tanks.

If you ever want to talk about "the t word," please let me know. When Lauren's doctor said it was time to talk seriously about a transplant, we had been preparing ourselves for several years. Ever since she was teeny, tiny in the NICU, we knew that a transplant was her only real hope. Our prayer was that she'd get a bit bigger and stronger before that day. She was bigger and stronger.

She's doing fabulously these days, especially from a cardiac standpoint.