Friday, June 11, 2010

E Speaks Up

Can't believe it's only been two weeks today since the good doctors at duPont fixed my kid. Ok, she's not completely "fixed", as in "as she should be", but she's on her way. Her cardiologist says she's definitely improved and on the right track. But as he put it, it took more than 3 months for her heart to get that enlarged, so it won't go back to its natural state just like that. We'll get it checked again in August. Really? Two months? Cause you can totally see her sooner! Can you check it, like, every 2 days for me? How about a little take-home echo cardiogram kit? I know some parents who have been through health concerns or multiple operations for their children, and to them a 9-day stay after closed-heart surgery is small potatoes. Humor me, though. Because it rocked our small world.

This video was taken minutes before her surgeon came in and explained to us that, among other lesser side effects, she would most likely have some vocal cord issues after her surgery:

With this particular heart surgery there is a risk of vocal damage. The nerve attached to the left vocal cord (remembering this stuff from college now!) is actually wrapped around the ductus. During the ligation it has to be moved. Afterwards, since her "quite large" ductus was tied shut and in a different position, her voice could be quieter, raspy, or barely there at all. This has a less than 1 % chance of being permanent.

So she could lose her voice in exchange for this, uh, alteration? Ok. So now she's the Little Mermaid ? Maddie would be thrilled.

Actually her voice has progressed through all three of these vocal options: quieter, raspy, and barely there - in reverse order. Vocal damage, to a General Music/Vocal teacher, is a little hard to swallow. I sing with kids, well, professionally. I love to bring that home. I treasure those early videos of Maddie conversing back and forth with us, slipping into her head voice and cooing...*sigh* it's good stuff. With Ellie? You can hear her vocalize now, but it's breathy. Her cords don't vibrate correctly, kind of like when you have laryngitis - only on more pitches than the usual cold-sufferer experiences. You have to actually look at her face to see if she's happily shrieking about a toy or losing her mind in tears. I crank her monitor at night for fear of not waking up while she's having a screamfest in her crib at 2 AM...if ever she decides to have one. Her cardiologist said her voice sounds pretty normal for a patient in her situation, and he thinks it will return. We just have to give it time. We already think we hear an improvement over the last two weeks. Phew.

Here in this video she's kvetching, probably about the room being a sub-zero climate (we got it warmed up later). Or she might actually have been hungry. (Before the PDA got closed we rarely saw "hungry".) She hadn't had a bottle in 6 hours, anesthesiologist's orders. In the video I think I fuss about her kicking her blanket off because Bob and I had icicles hanging from our noses, and we were fully dressed. She is babbling with a concerned air, and her tongue keeps getting in her way. She sounds a little worried. They say babies perceive way more than we could imagine. Wonder if she was getting our nervous vibes?

I haven't heard this little voice in the two weeks since we went down to duPont, which in my world was a whole different lifetime ago. I miss hearing E's side of our little conversations. It may takes months for her voice to come back (please God that she's not in the less-than-one percent of kids for whom the vocal chord paralysis is permanent). But we exchanged her little voice for the repair and healing of her heart.

I think we got a great deal.

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3 comments:

aunt waurwa said...

omg i can't believe she talks so much!!! soo cute!

Anonymous said...

I love this video. But it just makes me cry, too. I didn't realize just how much I missed that little voice, and those "conversations", until I heard it again on the video. Bittersweet.
Love,
Nana :-)

Megymelly said...

I seriously cannot believe that I consistently spelled it "vocal cHord" in this post. Honestly, I should not be allowed to type with out 20 oz. of coffee, minimum, at my side. Oh well. Ever the Music Theory student. Or not.
TG for EDITS!

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