Craniofacial Visit

My day started off kind of crazy. It started last night (yesterday afternoon) when I got a text from my best friend telling me that her baby was sick and so she wouldn't be able to watch Grace and Luke during our doctor's appointment with Faith so we didn't risk catching it. So, we called our old babysitter and left a message and tried a church friend (who unfortunately was back to work as a teacher) to find someone to watch them. We didn't get a return call from the babysitter before bed. Due to Faith's feeding schedule, I didn't attempt to really go to bed until after her midnight feeding.

We slept really well until about 3 a.m. and then Faith moved from the bassinet to my bed until about 4:40 a.m. when she let me know she really was hungry. I fed her, pumped, and then attempted to convince her it wasn't supposed to be "awake time" until about 6:30 a.m. when she finally fell asleep and let me turn off the TV (light). At 8 a.m., Grace burst into my room and told me that Luke was awake and that Daddy had sent her upstairs only one time. I informed her that Faith was not awake and she needed to leave us alone. About 20 minutes later, she came back in and told me that she got Luke out of his crib and sure enough he was all smiley beside her. I have no idea how she got him out of his bed. He weighs more than 30 pounds! I was a bit grouchy, but I changed Luke's diaper and took him downstairs and got his milk and handed them over to Daddy. I attempted to go back to bed, but I couldn't stop thinking about our babysitting situation, so I got back up and started my morning. Around 9 I started making more calls, but long story short, we couldn't find anyone on short notice to watch the kids. So, we decided that we'd attempt to give Luke an early nap, so he wouldn't be too horrible at the 1 p.m. appointment.

Around noon we left and stopped at McDonalds for lunch and then headed to Children's Hospital for Faith's craniofacial appointment. The kids were mostly well behaved except for Luke figuring out where the light switch for the room was and feeling the need to push the chairs all over the room and play with the automatic water in the sink.

Faith's appointment started with the Nurse Practioner and her weigh-in and measuring. She weighed 8 pounds, 6 ounces! After 2 1/2 weeks she's made it back to her birth weight. She was born at 8 pounds, 2 ounces, was 7-8 at discharge (2 days). We had a weight check at 4 days and she was down to 7-2. At 1 week we rechecked and she was up to 7-6 and then again at 9 days and she was up to 7-8. So in the last 8 days she's gained another 14 ounces. I guess my pumping is doing some good at fattening her up! They asked us about her feeding and seemed satisfied that she's taking 3 1/2 to 4 ounces every 3 hours. Next we met with the surgeon. He explained that her cleft is both hard and soft palate. He will do a repair surgery when she is 9 or 10 months old (we got back June 1st for another consultation and to finalize the plans). The reapair will be the same as Grace's surgery. They will cut down the gum line to get some extra tissue and then pull the skin together and stitch it up the middle. Apparently, the bone on the roof of the mouth isn't that important as long as there is something separating the mouth from the nasal/sinus cavities. So, her repair will be all soft tissue and she will never have any bone on the roof of her mouth. The next doctor to come in was the speech pathologist. At this point we don't have much to discuss with her, but I'm sure around age 2, she'll become a vital part of our team. The ENT came in and told us that we can expect Faith to have lots of ear infections and unless she somehow doesn't have any ear infections and her ears look great, we'll have tubes put in during her repair surgery. Shouldn't be a big issue and we are used to that with Grace, so we'll just keep an eye on it. The last set of doctors we saw was the dentist group. She confirmed the cleft doesn't extend to the gum line. She did say it appears that her mandible (lower jaw bone) may be a little small and that if it doesn't catch up we may need braces or something, but for now, there are no major issues. The geneticist wasn't in today, so we didn't get to have that meeting, but they do want us to reschedule that appointment, now that we have siblings both with clefts. I'm curious to know why (if they can tell us) we had two out of our three children with the same birth defect, but at the same time, we don't have any intention of having more children, so it doesn't really matter as long as they don't find anything else wrong with Faith (or Grace).

So, that's the update on the appointment. I need to go make some more milk for Faith before she wakes up for our last feeding before Mommy's bedtime. :)