Rusty was born full term, yet had many complications during his hospital stay such as noisy breathing, poor feeding, and poor growth. Rusty was initially breast fed, but due to difficulty with weight gain, Rusty received an NG tube for primary nutrition at 1 month old due to concerns of aspiration. Rusty then was diagnosed with significant retrognathia and has mandibular distraction surgery in July at 2 months old. Although his breathing improved, Rusty continued to have difficulty with feeding. While at home, Rusty’s parents continued with tastes of puree and allowed Rusty to explore with solid foods through the baby-led weaning approach. Although Rusty did well with eating for a few weeks, his parents observed more crying and refusing feedings. His oral intake dropped and he again had difficulty with weight gain. Rusty received a G-tube in September when he was 4 months old. After this G-tube placement, Rusty would take a few bites from the spoon, but relied 100% on his tube for nutrition and hydration. During the time prior to the tube wean, Rusty was diagnosed with DiGeorge Syndrome, also known as 22q syndrome. He underwent brainstem decompression surgery at 7 months old.
Following multiple failed attempts to increase oral feedings via different methods, Rusty’s family decided to do a supported tube-wean. His journey started at 9 months old with the team at Spectrum Pediatrics at the Virginia location. Due to Rusty’s history with aspiration, his swallowing was closely monitored and the first few days of treatment focused on allowing Rusty time to explore and demonstrate interest in food. Rusty’s parents describe him as a generally happy baby and he could not have been happier to be in a new place and meet new friends! Rusty initially showed interest in pouches and reaching for foods that his parents were eating such as crackers and bananas. Rusty quickly learned to love to eat oatmeal for breakfast while his mom spoon-fed him. Rusty also demonstrated a need for independence, he loved to munch on puffs, cheese crunchies, and strawberries. Rusty quickly learned how to drink independently from a pouch and eventually a straw cup with milkshakes and smoothies!
Rusty also started to enjoy home made meals that his parents ate as well, such as Dad’s butternut squash soup! Rusty slowly started to trust food and learn how great it made him feel! Rusty was eating enough by day 4 of treatment to discontinue his tube use. Rusty worked very hard to learn how to finger feed himself, drink through different cups, and swallow purees and liquids. Rusty started to show clear cues to his parents during mealtimes such as pushing away the food when he was all done and reaching for his cup or the bowl when he wanted more.
During his transition home, Rusty was happy to be back having mealtimes with his older brother. Rusty quickly learned to eat various foods and became a more competent and confident eater. Rusty started to learn what he needed to make him feel good, as he continued to learn how to crawl, cruise around, and take a few steps independently. Rusty now loves grilled cheese, kielbasa, meatloaf, roasted broccoli, peanut butter toast, and smoothies! These are just a few of Rusty’s favorite foods, but he loves a wide variety of food now. During the past summer months, his family learned that he loves to eat ice cream straight from the cone and strawberries straight from the patch!
Rusty recently had his G-tube removed. We are so proud of Rusty and all of the things he has accomplished! Congratulations Rusty on being a tube-free superstar!
Photos provided by Rusty’s family.