On Monday, Charles and I met with Dr. Kevin Smith, the director of the Cleft Craniofacial Clinic at the University of Oklahoma. He will be the one doing Te2's surgeries. He went through a power point presentation with us that reviewed the different types of cleft lips and cleft palates. It also covered the different types of bottles available for feeding a baby with a cleft palate. We found out that they are pricey, about $40 a piece! It also covered the typical surgery timeline for Te2.
Dr. Smith told us that he cannot guarantee that there is actually palate involvement. He said we will not know that until Te2 gets here. This definitely gave me a little bit of hope, which I'm not sure is a good thing. We had already accepted that the palate was involved, so hopefully hearing this won't cause us to have to go through that disappointment again if he is born with a cleft palate. It would be such a blessing if it isn't, because it would mean a lot fewer surgeries and complications. I guess we will just have to wait and see!
There are a couple of devices that I have seen other cleft palate teams use, the NAM and the Lantham. Dr. Smith talked with us about those and it seems it is dependent on how large the cleft is. It would be preferable to not have to use either of these. The NAM requires weekly appointments for adjustments and the Lantham has to actually be surgically placed, so it would be an additional surgery.
Assuming we don't have to use either of those devices and that there is cleft palate involvement, the surgery schedule would likely be similar to this:
Lip Repair at 10-16 weeks
Palate Repair at around 12 months
Alveolar Repair between ages 5 and 11
Other surgeries he might have to have depending on development, growth, scar tissue etc.
Nasal tip reconstruction
Lip scar revision
This is the site for our cleft palate team. It has a great overview if you want more details about cleft lip/palate and the specific surgeries.
We won't see Dr. Smith again until Te2 is born. He will come evaluate him in the hospital and then we will go from there depending on what he finds.