More Challenges

We were released from the hospital on Saturday and the following Tuesday we had a doctors appointment with the pedi to check and see how the feeding tube was working. We hated holding her down and putting the tube in and it hurt my heart so much every time but I knew that she had to eat somehow. At the appointment he decided that putting in a NG tube would be better. To explain it meant that the tube now went in the one nostril that was formed and it would stay in there. In the meantime we had ordered a bottle that was specially made for babies with clefts. Kenley hated the NG tube and ended up pulling it out of her nose a few times. Saturday morning we were in San Antonio and ready to see the team of specialists. The first person we saw was a speech therapist and she taught us how to properly feed Kenley with the bottle (the haberman) and requested a swallow study be done to make sure that she was aspirating any of the milk into her lungs. Next we saw the ear specialist (Dr. Perry) and he informed us that her ears were full of fluid because of the cleft palate and said that he would place tubes in her ears at the first surgery. Your palate is what allows the fluid in the ears to drain so when her palate is fixed then she will no longer need the tubes. I was shocked because I didn't realize the condition could effect her hearing also. Then came her two plastic surgeons, (Dr. Wang and Dr. Garcia) and the pediatric orthodontist. They said that her first surgery would be around 10 weeks when she was 10 pounds and her hemoglobin reached 10. The lip and nose will be fixed first and then when she's around a year old the soft and hard palate will be repaired. The orthodontist said that she will have to have at least 4 sets of braces before she's an adult and a bone marrow graft from her hip to form the missing gum. At least we have a few years before all of the teeth work starts. Once again I was shocked because I hadn't thought about her teeth being messed up because of the cleft lip and palate. We really loved everyone we met that day and we so relieved to be able to remove the tube and start teaching her to use the haberman bottle.