Monday we had an appt with the ENT with the craniofacial clinic at Doernboecher. Our first appt since Sean Michael's lip repair and post-op appt. His name is Dr. Milczuk and he is the Dr. that puts the ear tubes in during the palate repair surgery (the next surgery Sean Michael will have). The first thing they did was weigh him......
He weighs 21 pounds!!!
I'd like to pause here and celebrate the wonders of breast milk and the accomplishment of exclusively pumping. Now, context is everything, so allow me to paint a picture:
- He was born with a complete bilateral cleft lip and palate
- He cannot suck, hence he cannot nurse.
- He eats from a Haberman feeder which requires him to allow us to squeeze the bottle nipple and receive the milk and/or bite down on the nipple to make it flow out.
- He had the NAM for 6+ mos and then suddenly did not have it following the lip repair surgery
- He had a major surgery 2 mos ago
- He still has a cleft palate all the way from the front to the back
- He didn't eat more than an oz at a time (that I force fed him) for several days after lip repair surgery
- He had two nasty viruses and an ear infection a few weeks after the surgery
- He seemed hungry from 6-8.5 mos, but couldn't stand the feeling of solid food in his mouth.
- He's been eating solids for about a month, but every feeding ends in sneezing and crying after 4 - 6 bites.
- He has pretty much grown to 21 lbs on breast milk alone.
- I am pumping that milk and, by some miracle, still have enough for him.
- My first two kids weighed about 18.5 lbs at one year.
I'm feeling pretty good. Here is 2 and 1/2 yr old Pearl trying to feed her tiny baby brother. She weighs 26 lbs.
While we were waiting to see Dr. Milczuk, we were taken to Audiology for a hearing test. This wasn't scheduled in advance, but was something I had been wondering about and hadn't gotten around to asking. I had a feeling Sean Michael's hearing was not 100%, but I didn't know for sure. He doesn't ever startle with loud sounds and since he's had several ear infections and always has some fluid when we go to the Dr., I figured he was sort of hearing through water. The test was easy and fun. He sat on my lap in a sound proof booth with two big speakers in the corners in front of us. Noises would come out of the speakers and he'd turn his head to find whatever he heard. There was also some kind of automatic toy that would go off in between testing on each side. It sort of reminded me of Pizza and Pipes, a place we used to go for birthday parties as kids.
Anyway, Sean Michael has a mild to moderate hearing loss. When we saw Dr. Milczuk he confirmed that he recommends doing the tubes during palate repair. I asked him what percentage of kids with cleft palate have their hearing loss resolve after tubes and he said 99%. Phew!! Now I'm sort of looking forward to the tubes. A fellow mom whose baby just got his tubes during lip repair warns me, however, that it is very intense for them to all of a sudden be able to hear everything. She said he'll be dealing with that while recovering from the palate surgery. Poor guy. Definitely better to get both done at once, however, since they have to be put under for tubes.
Palate repair surgery
On the way home from Portland we called scheduling for Dr. Kuang (our surgeon) and were able to get a date for the palate repair. Phew again!! Monday August 31. The scheduler thinks he'll be first that day. Phew again! That was another of my concerns. Dr. Kuang was so exhausted after his lip repair. It would have been nice to be first that day.
So, now we can make plans and schedule lots of fun for summer before we have to hunker down again and nurse a hurting baby again. We plan to make the most of it. Our summer is planned out almost to the hour already. We can't wait to experience music with Sean Michael and lots of outdoor summer fun!!
Did I mention that Sean Michael is pulling himself up to standing? So fun!
