Thursday, May 1, 2008

No better news

Sometimes, good news comes when you need it most.

The breast-beatings, lamentations and general malaise lasted longer than we expected after last week's ear-tube tumult. We both wish it went better and beat ourselves up for pinning so much on what we should have known was a long-shot.

And it's been one of those weeks with Hope. My worry about disrupting the status quo with surgery proved prescient. The huge smiles, full-body giggles and "Oooh Daddy! You are so Funny" chortles are mostly gone. In their place are much fussiness, tears and apathy about Mom and Dad.

So, as usual, we felt physically ill sitting in the waiting room today for Hope's cardiology appointment. Heart defects are the main reason some CdLS kids don't reach adolescence.

It was a three-month follow-up to check on Hope's left ventricle, the main pumping chamber of the four that comprise the heart. It's a bit big. That's not good.

The fear is that generally chambers are big for a reason: Something is making it work too hard. We worried it is a manageable, but incurable, condition known as cardiomyopathy, which is quite bad.

It turns out that, like a lot with Hope, she may just be doing her own thing.

Her ventricle is a bit bigger than it was three months ago, but proportionately so to the rest of her heart. Blood is flowing fine. Her numbers are great. The heart is beating up a storm. Everything is doing what it should.

"I couldn't deliver any better news today," Hope's cardiologist told us. "If we haven't been tracking her since birth, we probably wouldn't have ever known there was an issue."

We'll see the cardiologist again in six months. After that, maybe once a year or maybe never.


Now is normally the time I would pontificate: Let this be a lesson in the vagaries of life, I might say, or Sometimes, your worst fears become pussycats when you stare them in the eye. But I've learned the hard way not to tempt fate by getting too ahead of myself.

So I leave it at wow.



Aunt Molly said...

Congrats on such great news, Maureen and Joel! What a relief! Miss and love you all!

Anonymous said...

WOW is right! About time you guys had some good news! So happy for all of you. Love the new picture too.

Love and hugs from Grandma Clem xoxo

beth said...

Great news! Hope this week brings better days and a happier Hopesy.

Anonymous said...

Whew! Good for her and good for you. Breathe a little easier and enjoy your weekend!

What news on the hearing aids?

Love from Maine --

Brooklyn Salt said...


Karen said...

That's great news, guys! One less major thing to worry about.

Misty said...

i am so very glad that is one specialist that you won't have to see as often!! YAY FOR HOPE!!!!!!!!!!!!!! very very happy for the three of you.

Jen said...

I am so happy that you guys got good you got great news!!!

Jen, Carter & our little jumpin' bean...