Later, we were told that Cam had a bilateral cleft lip and palate and that he would have to go to the NICU, so they could make sure that he could eat. Once that was figured out and he was eating a decent amount (two days later), he came up to our room. People apologized and cried for us. Our doctor came up and apologized for their sonogram tech not catching it, so we could be prepared. These first few days were full of mixed emotions. Overwhelming love for these two that just came into our family, and fear for everything we didn’t know about Cam’s future.
Not too long after we went home, we had an appointment with a plastic surgeon. He got fitted for what’s called a mouthpiece called a NAM, which in essence would cover his palate and also stretch things out in preparation for his first surgery at 4 months which would be his soft palate repair and lip repair. At 18 months he would have his hard palate repair and they would reshape his nose. Between ages 4 and 6 he would have a bone graft done to make his top gums one solid piece.
He had a lot going on with his face, that’s for sure. And I feel like someone was always messing with him. We had to take the NAM out twice a day and clean it and constantly fix the tape. He had a special bottle that he had to use with a valve in it since he couldn’t suck. I won’t lie to you, it’s hard. But it’s hard in the sense that you don’t want your baby to have to go through all of this.
We LOVED the moments when the NAM came out and we got to see his huge beautiful smile. It’s crazy how fast you fall in love with them. We just wanted to stay home with him all day and stare at his face. As his surgery quickly approached, we got a lot of anxiety. This little boy wouldn’t look like the same little boy anymore. He wouldn’t be the same boy we fell in love with. It’s weird to say, but we didn’t want to do it.
But, of course, we did it. That first day was rough and he was on a lot of pain meds. My wife and I cried…a lot. He was so different. He was in so much pain. What had we done? The nurse told us a lot of cleft parents go through that. That there’s a grieving period you go through. After he was over the pain, and his personality was coming back, we saw our son. We REALLY saw our son. His huge smile was still there, and he was just as beautiful now.