A child that earns the nickname ‘Warrior Bee‘ surely has inspiring strength and resilience. Our special guest is Ashley Faye, mom to Warrior Bee. She shares her son’s medical challenges since birth and his eventual diagnosis of Cornelia de Lange Syndrome, a rare genetic disorder. Read Ashley’s story to learn about her son’s tube feeding journey and how a blended diet has positively impacted his nutrition, development and health.
Thank you so much, Ashley, for your contribution the the Natural Tube Feeding blog.
~Claire
Ashley's Son's Tube Feeding Story
When my sweet warrior was born, he was immediately rushed into the neonatal intensive care unit (NICU) due to a high-risk scan at 33 weeks which led to the discovery of hydrocephalus. We were told he’d need brain surgery prior to his birth, however during the NICU stay his brain stabilized enough that surgery was taken off the table. He was born at full term but only weighed 4lbs and 13oz which was concerning to our NICU team.
We spent the next four days getting all types of scans, X-rays, ultrasounds and creating a laundry list of diagnoses. He ended up needing a life saving surgery to repair an intestinal malrotation at five days old. After a week of recovery with nothing by mouth, Warrior Bee, a nickname he gained by family friends that has stuck for years, was transitioned to a nasogastric (NG) tube and was given breast milk. After a few days with monitoring for tolerance of the feedings, the NG was taken out, and we could try bottle and breastfeeding. That was meant to be the end of our feeding tube experience…. or so we thought.
The first year of his life, Warrior Bee was in and out of the hospital every three months. It was so frustrating, and overwhelming. We couldn’t figure out why his immunity was so low or why he couldn’t put on any weight. He spent three weeks in hospital, in and out of the pediatric ICU, when he was six months old due to RSV – respiratory syncytial virus – and another three weeks at home with night time oxygen. This illness took him from ten whole pounds back down to just barely eight.
We worked through EVERYTHING we could think of to get him to gain OUNCES of weight, struggling through every turn. I tried the elimination diet to figure out his allergies, used a supplemental nursing system, pumped every two hours to increase my milk supply, and used all the early intervention therapy we could get. Eventually, after having poor success with his oral intake, his team and I scheduled his gastric (G) tube placement surgery.
Getting a Feeding Tube
The G-tube was placed two weeks after his first birthday. At the time of surgery he wasn’t even on the growth chart. It was disheartening – “failure to thrive” was added to the 16 diagnoses he already had. We spent two weeks in the hospital and he was prescribed an infant formula called Elecare, and was switched to 100% G-tube feeding with oral feeding “just for fun”. He had early intervention therapy twice a week to work through his sensory processing disorder and improve his oral intake. But, he wouldn’t even touch food after the G-tube was placed. We spent a long time just getting him to tolerate the idea of having food near him again.
At 16 months Warrior Bee was readmitted to the hospital. He had not been gaining weight as quickly as the medical team had hoped. It was to the point that doctors were accusing me of not feeding him. It makes me so upset that medical parents and caregivers get accused of such things without any evidence. While he was in the hospital the medical team decided that we needed to switch from the Elecare to something else. I had done some research on Real Food Blends and Nourish and I wanted to try those for him, because natural food is very important to us. Unfortunately these were just in the testing stages for the adults at the hospital and unavailable to us. We switched his formula to “Compleat Pediatric” which is marketed as being “natural food based”. It did help Warrior Bee get on his own curve again, however he still had issues with retching and being lethargic. Anyone who knows him knows he is a ball of energy and usually a happy ray of sunshine.
Starting a Blended Diet for Tube Feeding
I decided to take matters into my own hands and educate myself a little more. I joined blenderized tube feeding facebook groups and read stories about how blended food through the G-tube allowed some children to start eating by month and make global developmental leaps. Natural foods sounded like a LIFE CHANGER, and I was sold. I spent three months working with his food therapist to formulate a good starter blend. I was so excited, but we had one more hurdle to get through.
When we took him off Compleat Pediatric he retched (he has a fundoplication so he can’t actually vomit) and had the runs. He was exhausted and miserable. I thought this wasn’t going to work. I kept his fluids up, and my fingers crossed. It took about two weeks for him to completely recover from the high sugar formula and adjust to our basic homemade blend. Once he did, his skin was clearer, his energy was higher. Most importantly he was more engaged in his early intervention therapies, with his occupational therapy, physiotherapy, and speech therapy.
Finally he was starting to touch puree foods. He started to pull himself to standing and making more verbal sounds – he’s hard of hearing – and it was truly amazing to watch him thrive in ways I had only hoped. Eventually I played around with some of his blends, adding prunes when he was constipated, and adding more vitamin c rich foods in the winter time to help with his immunity.
Thriving on Blended Food
Warrior Bee has been on the blended feeding tube diet for almost three years, and he’s still thriving! He was diagnosed two years ago with Cornelia de Lange Syndrome, after seven different genetic tests said that his blood work was ‘normal’. Diagnosis Day was an amazing day, especially after his surgical specialist said, “he’s too complicated we may never understand him”. Due to his diagnosis having their own growth chart, we have been able to allow Warrior Bee to explore more oral intake without the fear that he may fall off the growth chart. Blending food has allowed him to learn when he is hungry, how to communicate with us about his needs, and has given him nourishment to thrive. He went from a child who was struggling in all aspects of development, lethargic, and unable to do much physically, to a kid who is eating more orally, is full of energy and is reaching more gross motor milestones. A blended diet has given him the strength to try new things, for example he started walking at four and a half. He has reached the age that he loves to help making his blends and even help with his own feedings with his G-tube.
I would highly recommend to anyone on the cusp of trying a blended diet to do their research, get help from experts like Claire and give it a shot. It could open doors for you that you may not have thought possible. As parents or caregivers we want to give our children the best of everything. With natural blends I know that I’m doing my best to give Warrior Bee the nutrition that he deserves.
"There is something that is so beautiful about being able to cook for my family and blend the same meal for Warrior Bee."
I love knowing exactly what he is getting and being able to enhance his blends if I need to, like when he’s sick or constipated. One of my favorite things is making him a blend for his feeding tube and a smoothie for me so we can share a snack together. I firmly believe that feeding tube blends should be something that we oral eaters wouldn’t mind drinking ourselves. It’s challenging, but being able to know you made a meal that you can drink yourself is a great accomplishment.
Adapting to a life with a feeding tube can be a challenge, but little things like making your own natural meals for your loved one can make the experience just a little sweeter. I know Warrior Bee wouldn’t be where he is today without the switch to natural blends.
For more from Ashley and her Warrior Bee, follow them on Instagram @prettylittle_bee
More information about Cornelia de Lange Syndrome here