Cleft Palate

Kyleigh went to Duke today to see Dr. Georgijade, a plastic surgeon. He looked at Kyleigh's mouth and determined it is only a soft cleft palate and should require only one surgery to correct. However, they do not do this surgery until the child is closer to one year of age. 

Then we met with the speech pathologist for a feeding consultation. They watched Kyleigh eat and gave suggestions of how to best work through her feedings. They agree that she needs to be fed in the side lying position using the Haberman feeder (special bottle). As it turns out she will never use a regular bottle (Playtex or Dr. Brown's) for feeding. She is unable to get a full suction. It is described as a drinking from a straw with a hole in it, you never seem to get enough. With the Haberman feeder she is able to make compressions on the nipple and pull out the milk rather than suck like babies do with regular bottles. It was suggested that she is still elevated in the side lying position to help with possible reflux and fluid building up in the middle ears. She has already sustained some hearing loss due to fluid building up on her ears. We will be making an appointment to see an ENT at Duke to have her ears checked again soon. It is important to have her followed to help prevent middle ear infections. She will ultimately need tubes in her ears to help drain the fluid. They may be able to do this at the same time as the cleft palate surgery. 

So for now, we will see an ENT and then go back August 5th to meet with the entire Cleft Palate team at Duke to develop a surgery and recovery plan. The surgery will most likely occur between 10 months and one year of age. The recovery time is 1-2 days in the hospital (discharge is pending on her eating) and then 2-3 weeks until sutures disappear. They may wait and do her surgery closer to one year so that they can have another echocardiogram of the heart to determine the if the atria septum defect is still a concern or if it is closing up. 

They encouraged us to start trying to get her to drink out of a regular cup (not sippy cup) around age 7-8 months. They said that it is early but it will help in the eating and recovery period after surgery. 

We will be going back to Duke next Wed for her first surgery on her left eye to remove the cataract.