The Craniofacial Clinic Nightmare

I finally talked to the nurse coordinator from the Craniofacial Clinic (CFC). The CFC is part of the genetics department. I guess most issues with craniofacial structure are genetic. Cleft palates are also hereditary (or caused by teratogens according to my web research). We have an appointment on 9/24 which will be out main intake appointment and will take three hours. We will meet with the plastic surgeon, head and neck specialist, ENT specialist and speech pathologist. The speech pathologist will help us learn what speech patterns NOT to use with Wyatt so he doesn't pick up bad habits we need to break after his surgery. They will also cover dental care. I read online that babies with cleft palates get more cavities. They also tend to have ear infections so they might put in tubes.

We will have another appointment for unrepaired cleft palates between seven and nine months. And clinics after the surgery and follow-ups when he is 5 or 6. Long story short - we are in for months, if not years, of follow-up. The surgery, as I mentioned earlier, won't be performed until he is a year old and at least 20 pounds.

The part that made me most sad today is that the women completely crushed my hopes of breastfeeding him. It is just too hard for cleft palate babies to suck at the breast to feed. They will provide us with special bottles for him. Not only am I sad not to get to breastfeed, but if I want to at least provide him milk this process is going to be labor-intensive and long. I will have to pump and then feed him. The nurse mentioned that if it becomes too much I might want to think about dropping the pumping. They will come by in a week or two to show us how to the use the bottles to feed him.

I did look online and what I read also said that babies with cleft palates are nearly impossible to breast feed. I just feel so sad about not being able to breast feed him. I feel like everything normal and natural about conception, pregnancy, delivery and bonding has been taken away from me. I know I need to focus on the fact that I have a beautiful little son, but I also need to get over this deep loss I feel.

It also seems like we are in for a lengthy process of doctor's appointments and therapy sessions. I just don't want to hear that anything else is wrong with my perfect little boy.