Wednesday, December 19, 2007

Another term we'd rather not know

It was one truism in the summer of the ultrasound: The tests you spend half the night fretting about turn out fine; it's the ones you approach with calm that bite you where it hurts.

Never fail, during the 15 or so ultrasounds and echocardiograms preceding Hope's birth, we got good news when we were expecting bad and bad news when we were expecting none.

It's a truism for a reason. Today, Hope had a routine follow-up appointment with the cardiologist to check on a few abnormalities. Logically, we know Hope's heart issues are the ones that should keep us up at night. For whatever reason, they don't.

It could be time to worry.

The test revealed status quo for Hope's blood pressure, which means her heart is doing its job and getting blood where it should. But it found signs that her heart is working too hard to get it there.

Another new medical term we wish we didn't have to know: left ventricular hypertrophy. That means her heart's main pumping chamber, the left ventricle, is thicker than it should be because of overuse. Like a muscle, it gets bigger when it's asked to do more. The condition is not uncommon after a lifetime of high blood pressure. Hope is seven weeks old.

The cardiologist said it appears to be a mild thickening, which is good. But the problem either has developed in the month since she left the NICU or wasn't spotted there. That is bad.

We're not sure of the protocol. The good doctor has no idea what is causing the thickening, so like a lot of medicine, it's wait-and-see time. We have a follow-up appointment in six weeks. If the cause of the thickening is Hope's heart, there is medicine to stop the thickening but not reduce it. If something else is causing the issue the approach would vary accordingly.

Obviously, this is not the news we wanted a week before Christmas. There's no polite way around it: This sucks.

There's a naive, clinging-to-hope part of us that doesn't believe the test. That's mostly me. Hope had four echocardiograms in the NICU and each doctor had a different take. That's understandable. Her heart is about the size of a Macadamia nut now so there's ample room for interpretation and miscalculation.

But we've also known since late July that Hope was going to have heart issues. They always seemed to linger in the background as just another log in our bonfire of worry. They don't anymore.

If anything, today reminds us that every day with Hope is a blessing. It's corny as all get out, but it's true. Everything we've read about CdLS babies leads us to conclude the first two years are the most critical. That means we need to go against my nature as a cynic and Mo's as a worrier and never get ahead of ourselves, savor the moment and plant extra kisses on our sweet daughter's forehead.

1 comment:

Grandma K. said...

I keep thinking of Grandma Clem's expression: Geez-o-Pete! If is isn't one darn thing, it's another, and there's a whole lot of it we don't want!

It's solstice time, and the days will get brighter. Here's hoping there's much light and joy for you to offset the worries and fears.

Kisses to Hope and you. My gosh, she's gorgeous! Keep those photos coming!!

Love from Maine.