You see, when I was a scared, pregnant mom-to-be carrying a baby already diagnosed with a cleft, I googled.
I know that is what you're specifically told NOT to do, but really, does anyone actually heed that advice?
Anyway, here I was. At home. Sitting in my basement alone. Staring at the computer screen. I tried every search term; I visited all kinds of different sites. Some sites were good (the BabyCenter cleft support group comes to mind), others were not. I immersed and overwhelmed myself in all things cleft, reading about far too many things I shouldn't have been worried about yet. Looking up statistics. Looking at hundreds of pictures. Worrying myself silly.
Eventually I stopped that. Long before she was born I got myself in order, we met our future plastic surgeon, and I focused on the fact that we were having a baby. I got the worry and freaking-out out of the way so I could move on.
But, I still clearly remember how extremely comforting it was when a coworker linked me up with a friend of hers who had just given birth to a little boy with a cleft lip and palate - exactly what Bailey ended up having. Yay, finally! Someone to give me real information! - not something more akin to a medical pamphlet.
So while this blog rarely focuses on Bailey's cleft, I also notice that I get traffic from people using keywords like "cleft blog" or "cleft palate information."
And very likely that is a future or current cleft-parent looking for some validation or reassurance or maybe just some real talk. So that's why I'm writing tonight. Hopefully this gives some insight into what comes after the special bottles and first two surgeries.
So Bailey has had 3 other cleft surgeries up to this point (lip repair, palate repair, nose/lip revision) as well as 5 sets of ear tubes. (For more details, click here.)
This surgery was planned after she had a sleep study completed in May. Bailey has always snored, but her restlessness and complete destruction of her bed at night finally caused us to dig deeper. The study revealed she had sleep apnea, which we were already pretty sure of to begin with.
It was recommended by the ENT to remove her tonsils to hopefully open up her airway. And since our plastic surgeon had mentioned doing a touch-up to her nose and lip either this year or next, we opted to schedule them together. The ordering ENT was not able to coordinate schedules with our plastic surgeon, so we went with another ENT associate.
Bailey was the first surgery scheduled. They took her back on time, and we settled in to wait. About 30 minutes later, our ENT came to our room. Since he wasn't the one who ordered the procedure, he wanted to know exactly why her tonsils were being removed even though they were not enlarged. We talked about the sleep study and her trouble breathing through her nose.
Then the plastic surgeon walks in.
(Very unusual to have both operating doctors leave and come chat with the parents half-way through. I'm pretty sure our nurse had a mild panic attack!)
We talked over more of what they were seeing in the OR, and we agreed to leave the tonsils and check to see if the adenoids were enlarged and needed removed. Turns out they did. Our doctor told us they were some of the biggest he's seen. They were 100% blocking her from breathing through her nose.
Not having her tonsils removed was definitely a change in plans, but a positive one. In cleft kids, leaving the tonsils in place for as long as possible is advantageous because it assists the palate in some ways, especially when it comes to speech and swallowing food without leaking. So while many times tonsils and adenoids are removed together, we're glad they didn't have to be in Bailey's case.
For his part our plastic surgeon shaved off scar tissue on the underside of Bailey's lip, shaved down the scar between her nose and lip, and lifted up the cartilage of her right nostril after removing more scar tissue. She has nasal stents in both nostrils to help them hold their shape.
All I can say is that our girl did awesome!
I don't know if I can adequately describe this child's pain tolerance.
It's high.The highest she rated her pain the entire day of surgery was a 2.
She denied any pain the rest of the day.
We've been keeping her on Tylenol, and she has to use nasal spray 6-8 times a day. But she can eat normal foods and is back to all normal activities (except swimming).
It will probably be a week or more until we can tell if the adenoidectomy helped her breathing and sleeping. It would normally be about 4 days, but I'm guessing the facial/nasal swelling might prolong things a bit. We're very hopeful that she will see dramatic improvement in her breathing and be able to get much higher quality sleep.
And to all our friends and family members, we appreciate all the prayers you have said for our girl this week. She felt every one of them! ♥