The G-Tube Life Chose Me: A Mom’s Guide to a Blended Diet

My youngest daughter, AC, was born with a congenital heart defect and had a post-birth Down syndrome diagnosis. Unfortunately, during her first open heart surgery when she was 5 days old, we learned that some nerves were damaged and her left vocal chord was paralyzed. We were referred to an otolaryngologist who ordered a dysphagia or “swallow” study. AC had to drink/eat liquids of different consistencies while an x-ray showed how she swallowed. The results weren’t ideal, and so our tube feeding journey began.

The study showed that AC was silently aspirating liquids. This meant whenever she drank from her bottle, liquids got into her lungs. She would do this without reacting or coughing, hence the “silent” aspiration. This could cause pneumonia or other difficulties. We were instructed to stop all feeds with her and were to be admitted to Rady Children’s hospital so that they could place a nasogastric tube (ng tube). 

An NG tube was inserted through her nose and into her stomach. She would be fed by attaching a syringe to the tube and pushing milk through it. AC had the NG tube for 7 months before her gastrointestinal doctor decided it was time for her to get a gastrostomy tube. This required another surgery, where a tube is inserted through the abdomen and food is delivered straight to the stomach. I preferred the little button to the tube on her face that she constantly pulled out.

AC received her G tube along with a pump that would feed her. She was placed on a special formula and we met with a nutritionist to adjust her feeds. It wasn’t an easy switch, and AC rarely tolerated the formula. She was throwing up a lot and was always constipated, so her doctor prescribed her Miralax to help. She would be hooked up to the pump for an hour and a half 3 times a day and had to be fed continuously overnight. So even though she was sleeping through the night, my husband and I were having to wake up multiple times a night because that pesky pump would beep for literally anything or she would be tangled up in all of the tubes.

I started doing my own research about the formula she was on and wasn’t impressed. Reading about other people’s experiences online with home blended diets were so positive and encouraging. I was intrigued, and so I brought this information to AC’s nutritionist. We were put on another formula that claimed to contain “real food,” if you can call brown rice syrup or carrot powder food. *eye roll* Don’t get me wrong, I don’t hate formula. But it clearly wasn’t working for her. She continued to throw up multiple times a day. I couldn’t take the stress of it or the laundry anymore and took matters into my own hands.

I ordered a book from Amazon, watched a few youtube videos of other parents with g-tube kiddos and ordered a fancy blender that could pulverize solid food to liquid in seconds. From there, I calculated how many calories she needed and researched how to measure out food so that I could make sure she was getting the correct amount of nutrients.

Now, I wouldn’t say that I went against doctor’s orders, but I didn’t consult with them when I decided to make the switch. When she was first born, I followed every single direction that doctors gave me. I didn’t know anything about heart defects or feeding tubes. But now I was learning. I was learning more about AC, more about what her body could and couldn’t take. That’s why I felt comfortable making this change for her. After all, I was her mom and spent every minute of every day with her, unlike her doctors that only see her for an hour every couple of months.

Off to the store I went to buy a plethora of organic fruits, vegetables, meat, dairy free milk, nut butters and a kitchen scale to measure. I copied a basic recipe from the book I purchased and started blending away. I cut out her formula cold turkey and she did so well. After a few days, she was no longer throwing up and her bowel movements became regular. One less medication to take. Score! A few weeks later, we noticed a change in her. She seemed to have more energy, moving around more and talking more. Even her therapists who see her weekly asked if we were doing something new because she seemed “different” (in a good way!)

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AC started a home blended diet 6 months ago and we have not looked back. I always look at it from a different perspective: if she were a healthy 2-year-old she wouldn’t be consuming formula as her only source of nutrition. Luckily, her GI doctor and nutritionist were on board with the switch since they were able to see how well she did on it. I blend for her every single day and I feel so good knowing exactly what I’m giving her. If that weren’t enough, we were also able to get her off the pump and feed her through a syringe. Hello, time saver! Best of all, we were able to get her off the continuous overnight feed. Yay, sleep!

It isn’t easy or cheap to do this, but it is so worth it. I only wish my older girls ate this healthy! AC continues to work with an occupational therapist specializing in feeding therapy to hopefully get her to eat orally at some point. So far the only food she will entertain is french fries, can’t blame her for that! Until she can eat on her own, I’m happy to be able to provide her healthy, real food options. Goodbye, “less than 2% of dehydrated chicken powder”!!

Doctors know a lot, but Mama Bears know their cubs. Have you ever done something for your child that wasn’t advised by your doctor? Or maybe even that your doctor was against? Let’s hear some of your experiences! Chime in below!