Yesterday Micah had his first visit with the Craniofacial team at our Seattle Children’s Hospital. His first exam was a hearing test. I went into it not expecting anything to be wrong, but Micah does have hearing lost. It is common in children with cleft palate, as there is no protection from fluids entering his ear canal. The hearing loss probably isn’t permanent, but is probably due to excess fluid being in the ear. The solution for this is ear tubes, which they will place during his first cleft surgery.
Next we saw the pediatrician there, and then the surgeon (both are also on Li Li’s care team). We mentioned our concern about his lungs still not sounding clear, and the pediatrician confirmed after listening to his lungs, that Micah seems to have had pneumonia. She prescribed an antibiotic to help clear him up. I’m hesitant to use them though as they need to be given every 8 hours and we’re still trying to figure out our nightly sleep routine. I don’t want to have to wake him in the middle of the night! I’m also worried about the possible diarrhea and tummy issues it can cause.
The surgeon noticed that Micah’s head is not symmetrical. He thinks its for lying too much with his head toward the side. I think his head is perfect of course. I’m his mom.
One relief is that Micah won’t need taping. I love his little cleft smile and I want to enjoy it for however long we have before surgery, without tape in the way.
So, the current plan is to get his lungs clear and then when we’re ready, schedule his cleft lip repair. This will probably happen in 2-3 months. At the same time he would have ear tubes placed. Then, he heals and 3-6 months later he has palate surgery (the more painful and complex of the two surgeries).
After four hours at the hospital, Micah was probably over stimulated and refused to nap once we got home. I finally got him down about 2 hours later, at 4:30pm. It was a short nap. When bed time rolled around at 8:30, he was on the verge of falling asleep as he finished up his bottle, but when I layed him down, he woke back up. We kept trying again and he’d close his eyes for a bit, but then wake back up. He gradually built into a wide awake cry and each of us took turns dealing with him. Finally we gave up, put him in the pack n play and I laid down to go to bed. He needed to soothe him a few times but eventually he gave up the battle and fell asleep in the pack n play – for the first time. He wimpered at some point in the night and I moved him back into bed with us, but Praise the Lord, he slept through the night and I had to wake him up at 8 am.
Today he went to our CC (homeschool class) with us. He much better in the classroom than I expected (the class is in a church nursery room so there were lots of baby toys for him to play with), and took about a 30 minute nap. By the time we got home at 1:30 though, the cycle from yesterday repeated and he didn’t want to go down for a nap. I left him for spurts of time in the pack n play, and finally he fell asleep after about an hour of trying. Sadly, his nap only lasted 50 minutes. I hope he goes down better tonight.