Thursday, March 20, 2008

When you breathe...

Thursday Mar 20, 2008

When you breathe...

...I wanna be the air for you
I'll be there for you

So you'll all be proud to know that we made it up and out of the house this morning in record time - only 2 and a half hours. (Of course beating yesterday's record of 4 hours wasn't THAT hard to top, but who's counting?)

Today's trip to the pediatric ENT was a little disappointing. One of the risks of any surgery near the aorta is damage to the laryngeal nerve, including paralysis of the vocal cord(s). Apparently the laryngeal nerve goes from the brain, down around the aorta, and back up to the vocal cords. In moving it out of the way to repair the aorta, it's easy to get damaged. At the ENT, the doctor ran an endoscope up Jay's nose & down his throat to get a good look at his vocal cords. Jay was none to happy about this particular bit of fun (and who would be?!), but it is actually important for him to cry during the procedure so that the doc can see his vocal folds in action. Apparantly, one of Jay's is completely paralyzed, which explains his difficulty breathing, particularly when trying to coordinate breathing with swallowing.

There's really nothing they can do at this point - some kids resolve on their own, others don't. Those that don't can usually still talk, but typically have very soft, breathy voices. Sometimes the problem can be improved with speech/voice therapy. Surgery is another option, but not one they would consider until he's much older. One positive sign is that the doctor was impressed with Jay's loud cry. (Yeah, our neighbors are impressed at 3 a.m. as well.) That's a sign that he may still have a fairly normal voice when he does begin to talk.

And while I'm glad to have an explanation for his swallowing & breathing struggles, it doesn't really make feeding, especially nursing, any easier at this point. So far he's been unable to breastfeed and has been eating only pumped milk from a bottle. And while there are certainly advantages to bottle feeding, namely that I'm not the only one who can feed him, I was really looking forward to breastfeeding as a bonding experience.

I guess for me the hardest thing is that this is just one more issue that we have to deal with. All of the cardiologists/surgeons indicated that once the aorta was repaired, he'd pretty much be a normal kid - and I wholeheartedly believed that. In fact, his positive prognosis is really what has kept me going throughout the past 2 weeks. (Has it really been 2 weeks since he was born?!) But this is just another layer of medical issues that could very well follow him for life. And while I'm not really too disappointed that his career as a professional opera singer is probably over, I worry about him struggling to talk. The playground is a tough enough place for a "normal" kid, much less one who talks funny.


Jen, We can't wait to come meet Jay! We've been reading your postings, and very much enjoying them! Thank you for keeping them up to date, we feel like we are there. And in the words of my favorite artist
" Its hard with the world in your face, Trying to hold on..
Faith: you know you?re gonna live through the rain
Lord: you got to keep the faith!"
We just want you to know we are all here for you, and that everything will work out, keep the faith! Love Danica & Brian

Posted by Danica and Brian Andrews on March 21, 2008 at 01:44 PM EDT #

I love your postings Jen! I know that it will all turn out just fine ... keep the faith with you always! Looking forward to meeting sweet baby Jay. Happy Easter!

Posted by Marion on March 21, 2008 at 03:51 PM EDT #

Hey there...
Glad to hear that things are trucking along, but sorry to hear about that darned vocal fold. I know two OUTSTANDING voice therapists in Greeville though. So, if therapy is ever needed, I can help you out!


Posted by Katrine on March 23, 2008 at 08:38 PM EDT #

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