Many of us can relate to feelings of anxiety around tube feeding. For parents of tube fed children, stress and fear related to unpredictable reflux and vomiting is not uncommon. For some, transitioning to blenderized tube feeding can help. Read Tresa’s story of her daughter’s challenging tube feeding experience and how her dedication to finding a solution, a careful transition to a blended diet and a supportive dietitian made all the difference. Thank you so much Tresa, for your contribution to the Natural Tube Feeding blog!
Amelia's Tube Feeding Story
Amelia was diagnosed very quickly after birth with a chromosomal disorder and had a feeding tube of some sort right from birth. It’s been a journey of love and hard work.
I was on a strict elimination diet in order to be able to pump my breast milk and safely feed Amelia. I had to adjust the volume and speed of her tube feeds, but eventually we were able to reach a decent place. When at 9 months, I couldn’t keep up with the strict diet and pumping, we went the formula route and all hell broke loose.
Challenges with Tube Feeding Formula
No formula, none, worked for her. So we moved to a continuous feed of 23 hours a day. It was the best option we had, but she still threw up several times a day and night. It was a nightmare. Driving, appointments, outings, church, EVERYTHING SO FULL OF ANXIETY!
It wasn’t just vomiting. It was retching and screaming and mucous and blood. It was terrible. She also completely refused any oral feeding which she used to love while she was on breast milk. She had always accepted a bottle, even though she couldn’t ever finish it. So, when she refused to accept the bottle after our change to formula, it was heartbreaking.
Changing to Blenderized Tube Feeding
I knew we had to move to a blended diet, but we needed to wait for her surgeries after her first birthday to be able to transition. So, finally we began in March, when Amelia was 15 months old, one food at a time. One food for at least 5 days watching closely for a “reaction”. We had to be sure that the foods were safe. We wanted to do it right. So, slowly but surely, we built her blends up until we were able to transitioned her out of formula during the daytime. She still threw up during the day, but it seemed to get better. Maybe? It was confusing. She was still on formula at night, and the nights were now way worse than before. She was throwing up CONSTANTLY through the night.
We have an amazing dietitian through Early Intervention (State sponsored program) who has been helping us through this process. And after she heard what was happening, she recommended we ditch the formula, even though we weren’t at enough foods to have Amelia’s nutritional needs covered.
So we ditched the ghastly smelling formula. Immediately we saw the difference. Things looked better. There was still some vomiting. It seemed random, and we couldn’t tell what was causing it. She was also not gaining any weight. She never had any trouble with weight gain while on formula, even though she threw up so much. It was baffling. Until finally, after a series of events (that’s another story) we found she was bleeding internally. Her GI tract was so damaged after months of throwing up on formula that she had a GI bleed!
Her GI tract needed to heal and she was finally prescribed a PPI to help. Why she wasn’t on a PPI until then is another long story too. That was it! After a couple of weeks on the PPI, it stopped, the wretched vomiting.
We are officially vomit free and gaining weight. From continuous feeds to syringe bolus feeds of 6 oz, our journey has been crazy, just like so many others. Our life has completely changed. It’s a whole new world not being incessantly worried about her throwing up. I still have anxiety about feeding Amelia, but I’m sure that will get better with time too. Along with her vomiting, her severe eczema and constant diaper rash also left her and all because of real foods!
Blended Diet Success
I wanted to tell our story with hopes that it would help someone. It wasn’t overnight that things changed. It’s a lot of things that had to be changed and put together. Transitioning to a blended diet was the game changer. Feeding her real food and not synthetic compounds saved her and our family.
Thank you so much Tresa, for sharing your story. To learn more about Tresa and Amelia, follow Tresa on Instagram @teezajo.