Down & Out

I remember the first cardiologist appointment I took Gabe to.

He was six months old and had only been living under our roof for a few weeks.  We knew nothing about his heart condition except that he had already had two open heart surgeries and was likely to need more.  His case worker didn't even have a name to give to it.

Not only was I a nervous wreck, armed with a notebook full of questions, but this appointment would also be the first time I met his birth parents.  Already fiercely protective of him, my guard was up.  I was so preoccupied with navigating the awkwardness of being in a 10x10 room with the people who saw me as an enemy, that I missed a lot of what the doctor was telling us.

But I got the basics.

Gabe's heart was extremely underdeveloped.  The entire left side, missing.  The two previous surgeries had remapped the blood flow to allow him to survive with only two working chambers.  He was alive, but he was sick.  His future uncertain.

Over the past three years, we have gotten many different prognosis.

He'll need surgery by 2 turned into a possible heart transplant than back to a surgery sometime between 4 and 6.  We walked out of his last appointment with the best stats he's ever had and the decision to wait it out, see how his body compensates on it's own before intervening.

But through it all, one statement has remained the same, "he won't be as active as a normal child."  His heart just won't be able to pump hard enough, fast enough, for him to keep up with other kids.  Dreams of baseball and endless games of tag (or shopping trips without a stroller) should be put to rest early.  It's not going to happen.

But, y'all, I'm calling Gabe's cardiologist, whom we love and adore, a liar.

Because if Gabe is slower than most kids his age, he's fooling me.  The child is nonstop.  From the moment his feet hit the floor until he lays down again at night, he is on the go.  He runs, he bikes, he climbs up on every ever loving thing he can get his midget legs up on.

I spend many, many days begging him to PLEASE be still.

Until the days he is.

And I am snapped back to the reality that, this?  This baby that can't muster up enough energy to hold his head up?  That glazes over and sleeps for a whole day and doesn't eat?  

This could be our reality.

So many sweet HLHS Babies are toting oxygen tanks, long lists of medications, monthly heart checks. And Gabe is doing so, so well.  

These slow days, that are pretty much an every other month happening, scare me.

After a solid six weeks wishing he would be calm for just a few hours, I spend these days praying he'd perk up.  Be his old self.

He does.

The next day he'll wake up and be back to his regular antics.  And I'll savor the memory of snuggles.  The smell of his sweaty hair when he was sleeping on me.  And thank God that he's running me ragged again.


Phyllis said...

We will be praying for you all. {hugs}

kimmer said...

I love this little man with all my heart. I thank God every day for him in our lives...he's such a precious boy! I think of some of the funny little things he says and can't stop iling. I pray that God will continue his blessings on Gabe.

Stefenie said...

Hug. Keeping you guys in my prayers. Those slow days are always a shock back to the reality that is the journey we walk as heart parents.

pops said...

so lucky to have you and andrew....and josie!

Rebecca Stanley said...

Oh girl, I love your adorable boy and YOUR heart and everything about this. Praying always!