Saturday, December 1, 2007

My, what big adenoids you have...

As parents, we see a lot of things.

We see our children all goopy and gunky right after birth. We see their first smile, steps, laugh. I always carefully examined every part of my babies during the first hours after their births because I wanted to know them in every way. And, I felt like I really did know everything about my children until yesterday.

I got to see the inside of O's nose and throat. Was it interesting? Yes. Was it fascinating? Yes. Was it gross? Yes.

One thing the "non-cleft affected" world doesn't think about when a baby is born with a cleft palate is how much more involved the cleft is beyond the outward appearance. Appearance is important, but so are other things like speaking, eating, and breathing. Yesterday we were able to see very up close and personal the ramifications of O's cleft palate.

The doctor put a camera up her nose, carefully sent it on a mission to the back of her throat, and then had her talk. She's five and took it like a champ. I'm not five and can't say that I would've been nearly as pleasant as she was. This was a mini miracle seeing as how an off glance from one of her siblings can send her into a tirade that warrants punishment. It took a lot of prayer to have her be so cooperative and agreeable for this test.

While the camera made its journey, we were able to find out that she has extremely small nasal passages. They are so small that for a couple of seconds, the doctor didn't know if he'd be able to even get the spaghetti-like camera tube to actually go through there. We were able to see buggers up close and personal. (Insert dry heave here.)We also found out that her palate is only closing about 50% when she talks. This means air is escaping which causes her to sound nasal when she speaks. Everyone is always so amazed at how good she sounds for having had a cleft palate. Truly, she does sound pretty good. It's kind of been a puzzling experience of wondering why she sounds so good if she has palate closure issues and yesterday we found out why.

My daughter has GINORMOUS adenoids.

They are so big that they are helping her speak because they're taking up the room where her palate doesn't close all of the way. They also cause her to snore loud snores that rival a grown man. But if we take them out and do nothing else to her palate, her speech will become terrible. Her narrow nasal passages are also helping her to speak because they, too, are blocking this air.

So what now, you ask? We have to wait for her plastic surgeon to review the results, and the cleft team will get together and decide what kind of surgery she needs. She's already had a repair on her palate when she was 13 months, and a palatoplasty done in the fall of 2006, so the next step is either pharyngeal flap surgery, or sphincter surgery. These would require adenoids and tonsils to be removed prior to surgery, but the surgery would then help her speech. However, I'm scared of these surgeries. I've heard so many people talk about how this very stage of surgery is what caused their child to have sleep apnea. While it helped the speech aspect tremendously, the child couldn't go through life not breathing during sleep, so the surgery would have to be "undone" which means speech regresses.

As I expressed my concerns to our wonderful, wonderful speech therapist, Loretta, she said it's all in the skill of the surgeon and she said ours, Dr. Carstens, happens to be amazing at both of these surgeries. THANK YOU, GOD!!!!!

It was an informative day. It was also a scary day as reality once again hits us like a truck and makes us realize that being born with a cleft is like a seeping leak that invades every corner, every crevice, of our lives.


Colleen said...

Oh man... I wait on pin and needles as you know.
You're right... people who aren't walking the cleft walk have no idea it goes beyond just stitching lips closed. Sigghhhh... it even stinks for us when we find out just how invasive a cleft can be for the entire structure of their heads!!!
Good for Livi for being a great sport!!
Did she get anything special???

june clever said...

For being such a cooperative little angel, she got to go to Build a Bear. Since we live in Hickville, she's never been to one and was quite amazed with the process! She also got to see one of her most favorite adults on the planet and that would be Melanie (Mike's best friend's wife)who as an added bonus, just had a baby. Between the promise of the bear and the idea of holding an ACTUAL BABY all while seeing Melanie, she was pretty willing to cooperate with anything.