Faith's Blended Diet and Other Things that Help with Her Digestion

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Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time! 

Faith receiving food
through an NG tube in the NICU. 

Grandma giving Faith a bottle when she was 2 months old. 

After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she would cry so hard when her tummy hurt. The only thing that comforted her was holding her and walking around with her. 

When we tried feeding her real food, she would only eat a little bit and then stop. Her pediatrician told us to stop trying to give her real food and just focus on giving her formula so she could get the calories she needed to gain weight. But the formula was causing digestive issues, and she still wasn't gaining weight. Eventually she was diagnosed with failure to thrive, and the only alternative was a feeding tube. 

Faith feeding herself pancakes when she was 2 years old. 

Even with the feeding tube, she continued to vomit after eating. We found that we could only feed her little bits at a time. Her pediatrician recommended doing an overnight feed with a feeding pump, but she never tolerated this as the noise of the pump kept her awake. Plus, I was always paranoid she would move around and get tangled up in the tubing. 

Thankfully, though, the pump allowed us to do feedings at a continuous rate, which helped somewhat. Through much of her younger years, however, she continued to struggle with constipation, bloating, and gas. 

Faith getting a feeding when she was 4 years old. 

Her doctor's remedy for the constipation was to put her on Miralax. I was totally on board with that, until I noticed that she began having increased behaviors after starting it. It also it really didn't seem like a good long-term solution, especially since it is not FDA-approved for children under the age of 17! This laxative can also cause major side effects like bloating, stomach cramps, and nausea. 

Thus began the research to help Faith with the digestion issues that have seemed to plague her since birth. About 11 years ago, I took Faith off the commercial formula she was receiving through her G-tube. My thinking was, no doctor in their right mind would tell the parents of a non-tube-fed child to give them formula for every meal. Just because someone has a feeding tube, doesn't mean they should not be able to receive their nutrition from real food! 

My Vitamix and just some of the ingredients that go into Faith's blended food. 

In order to blend her food, I needed to purchase a high-end commercial blender. I opted for a Vitamix. I bought a reconditioned one and it lasted about 6 years. When it died, I purchased a brand new one and it is still going strong! They are quite expensive but worth it, as you need to liquify every little bit of food so that it doesn't clog the feeding tube or the Mic-key button. It blends things like coconut flakes, sliced almonds, and other foods to liquified perfection. 

I eventually changed doctors to one who was more supportive of her blended diet. However, she did want me to see a nutritionist to make sure that Faith was getting the right amounts of fats, carbs, and proteins. When I went, I was shocked when the nutritionist asked me why I was doing all of this when I could just give her formula! I could not believe that a nutritionist was questioning my desire to feed Faith real food! 

Making the switch from formula to real food when Faith was 11. 

I got most of my support from a blenderized diet group on Facebook. It was so easy to just ask a question, and someone always had an answer. Some of them had been blending for years, so it was a good group to learn form. Another resource that helped tremendously was the Complete Tubefeeding book. 

However, it seemed no matter what I kinds of food I added though, I could not get enough iron into her. Foods that were high in iron had a negative impact on her digestion. Because of that, she was put on an iron supplement. She was also not gaining weight as quickly as I had hoped. 

One reason for this is because it's hard with a blended diet to get all the calories into the food without increasing the volume. Faith's tummy could only handle so much at one time. In my continued research, I found organic blended food that came in pouches. I thought that would be one way to increase Faith's caloric intake. However, the DME provider told me they would not be able to order it, plus it was very expensive. 

In 2023, Faith was hospitalized for some complications following a procedure in which she received a test dose of baclofen. During the hospitalization, they wouldn't allow me to give Faith her blended food. They said they did not know exactly what she was getting, which made it hard to chart her intake. I offered to provide a list of ingredients, but they still refused to let me give it to her. 

No blended food allowed in the hospital!

They ended up giving her commercial formula, which I wasn't happy with, but I figured it was just for a few days. After reading about that incident, a friend who also has a child with special needs and a feeding tube told me if that ever happened again, she would bring me some of their Nourish, which is a special kind of feeding tube formula made with whole foods. 

The bag of food even lists all the ingredients and how many calories it contains. She told me that she was getting it from one of the local DME providers and that Medicaid actually covered it! 

Nourish is made by a company called Functional Formularies and they also make Liquid Hope, which is made for adults with feeding tubes. All I needed was a prescription from her doctor and to change the DME provider from whom we were getting Faith's feeding supplies. Medicaid actually authorized it, and I was able to start Faith on the Liquid Hope. 

I noticed that this organic food contained a lot of fiber, which was causing Faith to struggle with constipation. So instead of doing all of her feedings with the organic formula, I decided to just do one feeding of the blended diet that I had been doing. (Faith gets 3 feedings a day). The great thing about this combination is that Faith gets enough iron (no more iron supplements!), enough calories without having to increase the volume, and the right amount of fiber, plus a wider variety of nutrients. 

After her hospital stay, I began giving her Liquid Hope through her feeding tube.

Besides her diet, another thing I have used to help Faith with her digestion is a supplement called OmniBlue Ocean Minerals. Along with essential electrolytes, this supplement contains 420 milligrams of magnesium in one teaspoon. I used to have to give Faith a teaspoon a day, but with her improved digestion, she only needs 1/2 teaspoon to stay regular. 

I have struggled to find the right probiotic to give her, which is also essential for her digestion and gut health. The one I have been using lately is made by Healthy Genetics and also contains ginger root and a prebiotic. To help combat UTIs (which Faith has also struggled with in the past) I wanted to make sure the probiotic also contained Lactobacillus Rhamnosus and Lactobacillus Acidophilus. She also gets cranberries in her blended food and takes a D-Mannose supplement, both of which help prevent UTIs as well. 

I have found that a digestive enzyme helps too. The one I use is a little expensive, but I feel like when it comes to supplements, you need to get high quality ones in order to optimize their effectiveness. Faith's go-to digestive enzyme is made by 1MD Nutrition. (I just give her one capsule a day). 

Even though she takes all of these supplements, she unfortunately still struggles with GERD. For that, she is on Prevacid, which helps tremendously. I also add organic sauerkraut to her blend, which is supposed to help with reflux as well. 

Faith gets super excited for cake and other goodies! 

I hope and pray that I am giving her all the right things she needs in order to overcome her digestive issues. In 2018, she was in the ER for being severely impacted and I never want to go through that ordeal again. In the past, I have also had to resort to giving her enemas if she was getting backed up. 

Since starting the Liquid Hope along with these supplements, I haven't had to do that for at least 2 years or more. I should also mention that keeping her hydrated and making sure she gets enough water is also extremely important. Sometimes if I feel she needs it, I add a pouch of Liquid IV to her water.  

Since her digestive issues have improved, she seems to enjoy eating other kinds of foods. I think it might be because she doesn't suffer the negative consequences of food like she used to. Of course, some of her favorite foods include cookies, cupcakes, and chocolate, but she'll also eat bananas, yogurt, apple sauce and cereal bars. She also recently started eating peanut butter and jelly sandwiches! 

Faith waiting for her friends so they can go eat pancakes! 

With her improved diet, she has gained 10 pounds in the past couple of years. I'm guessing when we weigh her again during an appointment this summer, she'll have gained even more weight. 

It's taken many years, but I'm so thankful that we are finally at a good place with all of Faith's digestive issues. It's not perfect, but it is much better than it was before. 

I could not have done it without God's guidance or the help and support of those who also have children or loved ones in the same boat.