Thursday, January 31, 2008

We wait

Hope has a big heart. It sounds like swell news and something she comes about honestly -- Mo is nothing if not magnanimous -- but it's probably not.

We returned today to the cardiologist for a follow-up appointment. Of the issues that send Hope once a week to various specialists, her heart defects are the ones that terrify us. We fill notebooks cataloguing her daily feeds and weight, debate the quality of her poop and sleep for hours and absolutely delight discussing her latest smiles, farts and grimaces. But we barely talk about her heart issues because they're that scary.

Or maybe they aren't.

As we learned six weeks ago, Hope has an abnormally thick left ventricle. That's the main pumping chamber of the four that comprise her heart. It's on the mild side of big -- we're talking perhaps 5 millimeters compared to 3 -- but it's definitely measuring larger since her birth. Presumably, that's from overuse. Like a muscle, the heart grows bigger when it's asked to do more. It shouldn't have to do all that much for a little girl who turned 3 months old today.

Oddly enough, Hope's heart appears to be working well. Her blood pressures indicate it's doing a bang-up job distributing blood through her body. The flow through her heart seems fine as well. And the cardiologist today ruled out aortic coarctation, a pinching of a valve like a garden hose that causes blood to flow with increased velocity -- and worried us the most just two months ago.

So, like a lot in life and medicine, we're left with an unknown that's only resolved with time.

If her heart is growing thicker, it appears to be doing it on its own. There's no blockage making it work harder. The tissue itself could be abnormal, a very serious condition known as cardiomyopathy. We don't know now. This could go away, be a lifetime condition managed -- but not fixed -- by medicine, or it could eventually prove fatal.

So we wait.

The unknown is frightening. We're not good at it. But there are worse outcomes. The thickening isn't severe enough to rush us back to the cardiologist soon. We have a follow-up appointment in three months. We left feeling OK. The morning was stressful -- Hope melted down during an echocardiogram, EKG and blood-pressure screenings -- but our big, unspoken fears weren't realized. The tests didn't find more problems to require immediate surgery.

Driving home, we talked about the last few months and years. I launched into an empassioned diatribe of gobbledygook about how this is the defining moment of our lives. It sounded awesome for about 40 seconds. Then, as is my wont, it quickly made no sense.

Mo cut me off: "If anything, this just teaches me once again that we need to savor every day like the gift it is." She's right, of course. I'd be tempted to say she has a big heart if I didn't just learn that isn't always a good thing.


Grandma K. said...

Good news comes in strange packages sometimes, yes? We'll continue to hope and pray that this will keep on being "something to watch" and, if necessary, treat non-invasively.

What a great photo! Her grins are turning into whole-body events!! Course, her parents are pretty funny . . . .

Grandma K.

Aunt Annie said...

I'm so glad to hear about her appointment and that her little heart is pumping well and doing its thing. Returning in 3 months versus 6 weeks is a big sign of encouragement.

Hope must have had some great gas. That photo is her best grin yet!

Love, Aunt Annie

Karen said...

Hope does indeed have a beautiful grin.
The unknown is indeed scary - hopefully the cardiologist won't need to do anything more than keep an eye on things.
I remember the first year or so after Ben was born how many appointments we seemed to have. Thankfully these have dramatically decreased in frequency now that he is approaching his 2nd birthday. Hang in there! I love Maureen's perspective on things.