Why We Switched to a Blended Diet
Buggy had just been discharged from a 48 hour admission at CHOP for feeding intolerance. He was given IV gut rest and slowly we reintroduced his Elecare formula until he was deemed able to meet his hydration and calorie needs. We enjoyed a brief and temporary break from the projectile vomiting and severe bloating we’d gotten used to. He was interested in food, tasting apples and licks of cream cheese. Bug was also stronger, pulling himself to stand for the first time. I savored these comfortable moments but in the back of my head I heard the voice of the attending doctor, and the warning he gave me right before we left. “This is something that he will outgrow eventually but before he does, you will be admitted here again. Maybe in 3 months. And then maybe again 6 months later. Hopefully the time between admissions gets longer and longer until one day he doesn’t have these issues anymore.” Those words hurt me, deeply, but I have always been a person to appreciate the hard truth. I’d rather ache in the light than relax in the dark.
He made a lot of progress physically in the month of April, finally crawling across the room and cruising on furniture. But as the weeks passed his gut was getting worse and his energy seemed to decline. We made sure to get him out in the beautiful spring weather every chance we got and while his health was the best it had been his whole life, the frequent vomiting was bothering me. He was barely sleeping and had huge dark circles under his eyes. His skin was pale and he was still bald at over a year old. I joined the G-tube Babies Facebook page and began searching for his symptoms in old posts. My instincts told me that it was the formula. I lost count of how many formulas we’d tried, easily more than ten. Probiotics, soy, and eventually the hydrolyzed and horrifically expensive Elecare, with a two day supply costing $42 (luckily insurance covered it). We went for allergy testing and when he came back negative for the milk allergy we were told he had an “intolerance” which wouldn’t show up on the test. Then when we tried dairy free and he was still puking we were told to try elemental formula since his stomach “couldn’t break down normal food”. That sentence never sat right with me. And Elecare didn’t stop the vomiting. Not cute baby spit up either, but projectile exorcist, soak through a quilt and splash up the walls vomit. My little bug was suffering and I was getting very depressed. I struggled with guilt over his premature birth and this did nothing to help.
One day I came across a post in the G-tube babies Facebook page that got the gears turning in my head and gave me hope. This woman had a preemie daughter and like my son, this girl was vomiting on every formula. She heard about a blended diet for feeding tube patients and tried it for her daughter. Cutting out formula completely and using a powerful blender to make food smooth enough to go into the G-tube. The before and after pictures made me cry. This little girl went from pale to pink, her cheeks filled in and her hair got thicker. The vomiting decreased to almost never happening. The mother posted a link to the Blenderized RN Facebook group and I requested to join.
Once I was a member I read the group’s mission and felt myself shaking as I read each word. The mantra recited over and over was “You don’t need anyone’s permission to feed your child real food.” It felt like a spiritual awakening. Since the moment he was born I was at the mercy of the opinions of doctors and nurses, who after discharge decided that a can filled with corn syrup and powdered vitamins was better for him than my own breastmilk. In so many areas of his life, I felt like my child was never really mine. A piece of him belonged to the GI Department, Cardiology, Early Intervention Therapy and so on. We were all making decisions for him, working together but still I felt more like a student or employee and less like a mother. The mothers I knew and the mother I have, these women followed their gut, did what was best for their children and never needed to ask for permission or opinions.
The words of these truly brave women were echoing and resonating with me. Within the Blenderized RN group I found a community of sages. They were always ready and willing to answer questions, to share advice, experiences, recipes and encouragement. They walked the halls of the hospitals just like I did. They knew my pain because they walked the path before me and with me. After spending a year in crippling isolation thinking no one could understand our situation, I found a village. A tribe that spoke my language.
I put on my researcher helmet and set to task. I bought the blenderized diet “bible” and read it cover to cover. I calculated his nutritional requirements and hydration needs based on his weight. We bought a Vitamix, silicone ice cube molds and a kitchen scale. I printed out different recipes and lists of foods and placed them in a giant three-ring binder. On day one I decided to replace one bottle of formula with a two ounce syringe of my blend. I learned the consistency I needed to get it into the tube smoothly, how fast to deliver the bolus without making him nauseous, and the best type of syringe to use for real food. Once a day turned into twice, turned into all day long. We got rid of formula all together and while the vomiting didn’t completely stop, it reduced drastically. From many times a day to once a day, and eventually once or twice a week.
The boy I swore would be bald forever grew a thick and curly head of hair. He started trying to walk, he could go longer distances in the car and be out of the house for longer hours. We got him out into the fresh air to parks, rivers and even the beach. I stored my blends in the hotel freezer and fed my child my homemade food right there on the blanket in the sand. It was such a beautiful, freeing, reaffirming and unimaginable experience. I owe all of his growth and development in the past two years to the blended diet. I plan to go into more detail in future posts, but I needed to share the circumstances leading up to our decision to start blending. The reasons are plentiful, the results are remarkable and the truth of the diet is very simple: You don’t need anyone’s permission to feed your child real food.