We found out halfway through my pregnancy that we were having the baby girl we’d been hoping for, and started planning and preparing for her arrival. We picked out her name, Averie Jo. We bought the nursery bedding, we registered for girly clothes, and we looked forward to our daughter’s arrival. We bought a FEW bottles, as I planned to breastfeed exclusively except when at work, and bought a mid-range electric pump so she could have breast milk even in the few bottles she would have. I had to have a scheduled c-section due to a prior emergency c-section. So on delivery day, we went in nervous and excited to meet our little girl. I remember clearly in the delivery room hearing the doctor say “Yep, it’s a girl!” and then our little angel crying. The next thing I remember hearing is the nurse who was checking her over say “Oh, she has a cleft palate. You are going to have a hard time feeding her.” I remember those words like they were yesterday, even though they were over 18 months ago. I will never forget hearing them.
My first thought was of all the pictures I had seen of babies with clefts. When they brought her over to me, I thought to myself they had to be wrong, because she didn’t look like that. It turned out that Averie had a cleft soft palate. She does not have PRS or any other syndromes that cause the soft palate cleft, and we have no family history of it. There is no rhyme or reason for why she was born with it, but she was.
I tried valiantly for two and a half days to nurse her, after being told by two different lactation consultants that she could nurse. Well, anyone who has a cleft affected child knows they were wrong. She could not. We finally caved and gave her formula, to at least get her home. I pumped and pumped and pumped. She struggled with weight gain for what seemed like ages. In our metro area there is only one cleft team, and they did not accept our insurance, so we were flying blind, along with our pediatrician, who, in 17 years of practice, had never had a patient with a cleft before. I researched, he researched, and we came up with a plan of action. We struggled with feedings for what felt like forever. She didn’t like solids because they went up her nose. As soon as that happened, she was done with whatever she was eating and no amount of coaxing could convince her otherwise. We added extra calories to her breast milk (I pumped for a year!) and the formula we wound up supplementing with. Still she struggled with her weight.
Averie had her palate repair done in January of 2010, and healed picture perfect. We couldn’t have asked for a better repair experience. She was eating within 24 hours – more than she had ever eaten at one sitting in her entire life. We came home (her surgery was done in Chicago, IL, a 2 hour plane ride and 3 hour car drive from our hometown) and life went on as normal. Since the palate repair, she has gone from the 0.6 percentile in weight to the 4th percentile. She’s till teeny tiny, but she’s starting to catch up. Her speech therapist has been a godsend to us as far as keeping us calm and educated about her progress with her speech – as of last week, she is perfectly on track with her speech, although we do have to closely watch her annunciation as she is still missing a few consonant sounds. But we know that will come with time.
Through all of this, my husband has been the greatest support system I could have ever hoped for. Averie is his first child biologically. He came into my life when my son Britton was 18 months old, so to him, dealing with the special bottles and equipment and the doctor’s visits and all was normal. I knew it wasn’t, but he helped me to see that it didn’t matter. She was our gift from God, and we wouldn’t change a thing about what we went through. If anything, it made us all stronger, as parents, as people, as partners, and most importantly, as a family.