Our son has been a lifelong tubie, tube fed since birth because of medical issues that prevented him from being able to swallow safely. Just a few weeks ago, though, he began eating 8 ounces of stage two or stage three baby foods by mouth, a huge success for him, even at the age of three. While our goal is to eventually transition to all oral feeding in a quantity that allows us to get rid of the feeding tube, it’s a slow transition, based not only on our son’s ability to control the muscles used for chewing and swallowing, but also on his respiratory issues.
When Richie was a newborn, we tried bottle-feeding him with an adjustable flow nipple. He was never really able to take more than an ounce at a time, and that decreased to zero when he had a tracheostomy at two months old. He was tube fed exclusively until he was about a year old. Then we began trying to give him baby food by mouth in small amounts. By then, he had a noticeable oral aversion, and he was resistant to trying food orally, but he would occasionally taste whipped cream or jelly if we put it on his hands. He kept doing poorly on swallow studies, which showed that he was silently aspirating his foods, so we stopped oral feeding for a while.
Fast forward to age two, Richie went to see a new ear, nose and throat specialist (ENT), who insisted that we go guerilla style on feeding. He said the window for acclimating to oral feeding was from birth to age two, so we had better get going if we ever wanted him to eat by mouth. Because Richie was now wearing a Shiley speaking valve with his trach, he suggested that a swallow study might be more successful; he was right. With the valve, he breathed through his nose and mouth, which allowed him to smell the food he was eating. Anyone who has tried to eat with a stuffy nose knows how important smell is to tasting food. Richie did well with thickened foods, so we began thickening stage two baby foods with multigrain baby cereal, to about peanut butter consistency, for oral feedings.
He did well and eventually began eating up to four ounces in a sitting. Just a few months ago, we began capping Richie’s trach, covering the opening so he can practice breathing without using the trach. The cap also helps him to regulate the air pressure in his mouth and throat while eating. His most recent swallow study was “unremarkable,” which means he swallows like everyone else. We can now feed him baby food without thickening it, and he seems more enthusiastic about eating larger volumes by mouth.
Right now, we are working on getting Richie accustomed to more textured foods like crunchy puffs. His oral aversion and sensory issues are a challenge in this process. We use tools like Wilbarger brushing and oral stimulation with the Z-Vibe to make the process easier for him. I’ve even noticed that his desire for chewing and other oral stimulation has increased over the past few weeks. By blending new foods and creating different textures of food with the food processor, we are trying to expose him to different flavors as well. So far, sweet food is his favorite, but we hope to train his palate to like savory and even spicy foods. Food is such an important part of culture and family life that we hope to get him excited about family meals and new flavors.