I was asked by a moms group person to give info about our daughter so this is what I wrote, i didn’t realize how not updated her story was as she has gotten older…..
I guess to start you have to know my husband was born with a cleft lip. We had 2 miscarriages before Lacey, one resulting in a D and C. When we finally got pregnant with Lacey I spent the entire pregnancy worried so I almost never got to just enjoy the fact that I was pregnant (Refused all gifts as well until the end because I thought it was bad luck). We knew there was a good chance she would have a cleft and it was found at an early ultrasound because they were looking for it. So we were transferred from our smaller hospital to Albany, NY to have better care. That’s where we found out she had a bilateral cleft lip and was missing her palate. We were never concerned though. My husband has a heart defect so we were mostly worried she would inherit that more than her cleft. They checked everything with her heart before and after birth and it was a great feeling knowing she did not have a heart defect, as most babies with clefts do. We did, however, meet with a cleft team and find out about the possible surgeries she would have.
It wasn’t until she was born that we were told how severe her cleft and palate were that she would need multiple surgeries. She has gone through 4 so far in her tiny life (Lip Adhesion, Nose stent replacement, Palate repair, and Lip Repair) with so many more to go (her palate is not fully repaired, some teeth have come in sideways, and her premaxilla is still unattached to the rest of her inside mouth). She was supposed to only have two. Her surgeon was amazing for all of them, we loved her! (We are currently working with new staff because our surgeon and her PA left for a new job, in another state.) We are passed surgeries for a few years but she hasn’t slept well since her last one so she has to do a sleep study, we are currently waiting for a date for that. Just enjoying our open schedule for a bit before it’s jammed packed again with pre-op appts, surgery dates, follow ups, checkups, orthodontics, etc…
I know we were given a huge gift when we were given Lacey, and I’m thankful every single day she is in our lives. It’s crazy to me to think anyone would ever be embarrassed to have such a beautiful child.
Our little but loud family. 