As a mother, one of the most maternal things we can do for our children is to feed them. There are a population of parents, like me, that have never been able to experience the joy of feeding their child by mouth. My experience of feeding my son was always plagued with difficulty, frustration, and a sense of complete failure. I will never forget his third birthday because I ordered this beautiful and intricate cake. I was waiting with anticipation and excitement for him to lick the frosting and dive into the cake. Instead, when we lit the candles and offered him the cake, he cried and pushed the plate away. If we didn’t have a home packed full of friends and family, I would have started sobbing. I held it together in front of my friends and family, but inside I was struggling to cope with his feeding disorder.
He got to a point where he eventually stopped eating his preferred food, he vomited and choked on nearly everything we offered him and would pocket food and refuse to swallow. Everyone around me offered endless advice, we saw feeding specialists, and finally got a referral to a specialist that dealt with feeding disorders. She ordered a G-tube for him, and our family became a “Tubie” family. Our home became cluttered with medical equipment like feeding bags, Farrell bags, 60 ml syringes, feeding tube extensions, IV poles, mini-backpacks, feeding pumps, and boxes of formula.
My son had eaten regular food for three years, and I was distraught that we would have to give him formula in his tube. It seemed unnatural as his mother to go back to baby formula for a child that was on the verge of turning four. The doctor was adamant we start with formula, and I trusted her expertise. We stuck in the formula game for over a year, but over time his weight stalled and the amount of gas the formula created in his stomach made it difficult for him to breathe. I cannot count the number of times that I looked over to see his lips a shade of blue and watch him gasping for air. I was venting his g-tube up to 30 times a day on the worst days. I knew that we had to make a change, and I started talking to friends with children that were g-tube fed. I knew there had to be a better alternative to the formula.
As I talked to more parents, I learned about blended diets. I had known they existed, but I had no idea how I would implement this at home. My schedule was already packed with all of his appointments and the round the clock medical care he required. I wanted to find a balance that would give me the ability to give him real food, but one where I didn’t have to figure out all the calorie, fat, carbs, vitamins and sodium requirements. I pride myself on my intellect, but being able to find nutritional balance has never been a strong point for me. Three of my friends pointed me in the direction of a brand of food called Real Food Blends. I went to their website which you can find here.
The web page was incredibly easy to maneuver, and I was able to read about the food, how it was processed and packaged. The company was established by parents of a child that was feeding tube dependent, and their story resonated with me. As I dug through the information, it became apparent to me that I needed to get my son off synthetic formula and on a real food diet. The blends Real Food Blends offered gave us a variety of options with Chicken, Quinoa, Grass Fed Beef and Salmon as their primary proteins. While most weren’t certified Gluten-Free, none of the recipes contained gluten. It was also important to me that the blends also not contain any dairy. I wanted to cut out both dairy and gluten from his diet to see if it would improve his digestion discomfort, gas, bloat, and help motility and bowl movements. His stomach has always had trouble digesting many foods, and I wanted a diet free of processed foods.
With the help of another Tubie Mom, I was able to convince his pediatric gastroenterologist to prescribe Real Food Blends for my son’s diet during the day. She still wanted us to give him Peptamen Jr overnight for calcium and sodium. I agreed to this in the short-term, but my goal is to get him off Peptamen Junior completely by the end of the year. No child or adult should have to be fed while they are sleeping. I realize there are some that can’t fast, and I realize some have no other choice. However, for my son, I knew he could go a full night without food because he had done it for three years. I also knew in my gut that the real issue wasn’t his motility, but that it was that the synthetic formula was too difficult for his body to digest.
When the prescription was finally available, I called our DME and had them ship all four of the flavors. I prepped my house by getting blender bottles to thin out the puree so we could continue to gravity feed his food. I read up on all the ways we can supplement sodium, calcium, and vitamins into his diet. The Real Food Blends website had a ton of helpful information on ways to add foods to the blends to make them more complete. On the day the food arrived, I was incredibly giddy. I would say it felt like I was a little girl on Christmas morning.
Our first feed we tried the Orange Chicken, and he did well. I couldn’t believe it, but he had no reflux. With his formula, we would be half way through his gravity feed, and his reflux would be out of control. I was able to give him 16 ounces of food/water mix, and he had no reflux. He sang and hummed while he got the food, and he was so happy after we were done. I watched him run across the floor and crash to the floor. He was able to play with his toys, and he wasn’t struggling to breathe or choking on reflux or gas. I knew we would need to vent him at some point, but I was hopeful that he would need to be vented with less frequency. By the end of the first day, I only had to vent him ten times. On his second full day, we only had to vent him eight times. I know we will always have to vent him but to know that we can vent him and not have to spend ten minutes every time was such a blessing. Up until the blended diet, much of our life was spent on the floor working the air out of his stomach. Venting him now was a big woosh of air with a tiny bit of food, but it wasn’t filling up several 60 ml syringe with food like the formula.
We have tried three of their flavors at this point, and we only have the beef flavor left to try. My son is handling all of the flavors well, and he’s tolerating large quantities of water and food in his stomach. His reflux is gone, and his gas has decreased significantly. He has more energy, his skin color looks better, and his disposition is very happy since starting the food. He is humming and singing while playing. His quality of life is my primary concern as his mother. He has many uncurable diseases, but I can control what I feed him. I can help his digestion by eliminating synthetic formula from his diet. He is a five-year-old boy that deserves to have a well-rounded diet. It took me a few months to get the courage to make the change, but I am so glad I took these steps to improve his life.
If you have questions about blended diets or want to know more, please comment below. The best resource I would recommend is this link: http://www.realfoodblends.com/faqs/
I have a host of other links on their page you may also want to check out: