Feeding Scooter, as feeding any baby with a cleft palate, was a bit of a challenge.
Physically, she couldn't nurse. For that matter, she couldn't drink out of a regular bottle, either. We had to use a special bottle called a cleft palate nurser with special cross cut nipples in order to feed her. With the cleft in her soft palate, she couldn't get any suction in order to breastfeed or eat from a regular baby bottle, even though the hole was no bigger than my small fingernail. The cleft palate nursers are made of a soft, flexible plastic to make it easy to squeeze the milk out into the baby's mouth to make up for the lack of suction, and they worked fairly well once we got the hang of it. I hung onto the hope that she would one day nurse, and I made sure that all she had in her bottles was breast milk.
Seeing a baby with a cleft palate eat for the first time takes a person off guard, as milk invariably comes right out their little nose. It doesn't spray. It just sort of dribbles. But white is just not the color of what you're expecting to see come out of nostrils. Unfortunately, it also tends to make them cough and gag when they're eating, too. Bless her little heart. Eating was a chore for Scooter.
When she was a week to 10 days old, we loaded up the cleft palate nursers, the cross cut nipples, the breast pump and the kids and took off for Norfolk for Scooter's initial consultation with the plastic surgeon.
We stayed at the same little cruddy hotel with lots of character that we did each time we went up there. Don't get me wrong. It was clean. It was just a bit worn down and its furnishings were not updated at all, but its backyard was the beach of one of the little inlets of one of the bays in the area. For the life of me, I can't seem to remember the name of the bay it sat on, but I know it wasn't the Chesapeake, itself. But there were shells of all sorts, little crabs and fun little things that kept a little one's interest. There was even a real sunken ship!
We would pack up a cooler of picnic foods, grab the little tabletop propane grill and once or twice even the ice cream freezer and make it as close to a vacation as we could for the kids. As adults we were scared of what lie in store, and we didn't want the kids to pick up on that fear. So we did what we could to make it as special an occasion as possible.
We left NC the night before, so we would be able to see Dr. William Magee first thing in the morning. He and his wife founded Operation Smile and traveled around the world performing plastic surgery on children with cleft lips and palates who would otherwise never be able to afford the operation, (although at the time I made the appointment I knew of none of this). Often times, children with facial deformities are shunned by their communities, especially in developing countries. By having these surgeries, the children would look normal could live normal lives instead of being outcasts.
This was our kind of doctor.
His compassion was palpable. He put both of us at ease right away and began talking about Scooter's condition. He explained that Scooter's cleft was not only in her soft palate as originally thought, but it extended a bit into her hard palate. He said that the old school of thought was to wait until the child was 2 or 3 years of age to have the first in a series of surgeries to fix the cleft palate and subsequent surgeries about a year apart until the cleft was repaired.
However, he said that doctors were finding that, if the initial surgery was done when the child was much younger that it often meant only one trip to the operating room instead of multiple surgeries. And as frightening and overwhelming as it was, we were all in. We wanted as few surgeries as possible for our baby.
Dr. Magee also explained that when there is a genetic abnormality or a cleft lip or palate present that the bone structure in the head is often malformed and can lead to other issues. He said that the probability was that Scooter would have multiple ear infections and would need tubes in her ears, as her Eustachian tubes would likely not drain properly.
We left his office feeling elated that we had found such an incredible surgeon on one hand and being terrified on the other hand. Our newborn little baby would be going in for her cleft palate repair when she was only 6 weeks old.
We had a lot on our minds as we made our way back to North Carolina, and it felt as though we held our breath the entire way.
Compulsive hoarding is a mental disorder that is just beginning to be understood. As a hoarder, I have acquired things over the years with a specific purpose in mind at the time of the acquisition, used some of those items for their intended purposes, forgotten the goal for different objects, but now that I find that they have outlived their purpose in my life I am struggling to rid myself of those same things.
You can read the start of my journey here.