In honor of Prematurity Awareness Month, I am attempting to write a post a day. With each post, I hope to address a different aspect of our prematurity journey.
Before having a preemie, I was blissfully unaware of the world of feeding disorders (which are different from eating disorders). I did not know there were people who physically could not eat. That changed the day we attempted to start Charlie on purees.
When Charlie was about seven months old, her pediatrician suggested we start purees. Charlie’s dad and I were excited about the new milestone and spent half an hour deciding on the perfect first food experience in the grocery store. We gleefully rushed home and prepared to feed her.
I tried first and put the spoon up to Charlie’s mouth. She gagged and wretched. I was convinced I did something wrong and insisted her dad try. She gagged and spit up in response to his attempt as well. We were baffled as to what we were doing wrong.
I asked other parents about feeding. I received odd looks as they questioned, “What do you mean you can’t feed your baby?” My concerns were also dismissed as I was told, “No baby likes to eat at first.”
It seemed like online videos were everywhere of everyone I knew who had a baby feeding them their first food. The babies in the videos responded to purees nothing like Charlie. Why wouldn’t my baby eat?
A few days later, I called the pediatrician. After I explained the issue, she misunderstood my concern and gave instructions to be consistent. Despite my best efforts, it just wasn’t working.
I asked Charlie’s early intervention therapist for her thoughts concerning feeding. She gave the opinion that Charlie was not ready because she was unable to sit supported (Charlie had significant motor delays). I stopped the puree feeds and focused on other concerns at the time.
About a month later, Charlie was evaluated by her developmental pediatrician and his clinic. Along with other interventions, feeding therapy was recommended and started. The therapy involves desensitization of her mouth, strengthening the muscles in her mouth, and coordinating the movement of food in her mouth with swallowing.
The reasons for feeding disorders are as varied as the people who have them. It is suspected that Charlie has an oral aversion which may be a result from the intrusive instrumentation placed in her mouth during her NICU stay.
In the beginning, it was a challenge to get Charlie to put food, a spoon, or teething rings in her mouth without gagging. Her progress sometimes makes two steps forward and takes five steps back. There are stretches in which we are overly optimistic and become confident her feeding disorder will soon be a memory. These are followed by stretches that have us revisiting the question of whether it is time for a G (feeding) tube. Much like the rest of the preemie experience, feeding has its ups and downs.
For us, feeding has been a frustrating and worrisome see-saw endeavor. Which is why I am grateful for feeding therapy days like today. However, I have myself braced for a few steps back… just in case.