Before age 2, our daughter was diagnosed with Failure to Thrive. Essentially, she could eat baby food by mouth, but the effort to do so burned so many calories that few were left for her to survive. So, she was always hungry and wasn’t growing and developing as she should. As a mother, that diagnosis felt like “Failure to Parent.” I knew it wasn’t my fault. I knew it was the spasticity of her muscles from her cerebral palsy. But, as a parent, you are supposed to nurture, and help your children grow and prosper. She wasn’t growing, nor prospering. That felt like a failure on my part.
She had a temporary nasal gastric tube placed for a month to see if a feeding tube would work. In that month, simply taking in formula, she gained so much weight, and was much happier. She was like a new child. So we proceeded with the surgery. She was placed on a feeding pump, with prescription formula, to be fed at 9 AM, noon, 3 PM, 6 PM, 9 PM, then from midnight to 6 AM.
She began to grow and develop, much to our relief. However, she would have many sleepless nights, because of vomiting up the night time feed, which led to sleepless nights for us, waking to her crying and having to clean her, her clothes, her bed, and the floor, then change her and the bed. Some nights, she’d make it to morning then vomit, with exhausting results, all the same. She wasn’t happy, so we weren’t either.
After much thought and discussion about normal food consumption for children, we decided to cut out the night time feed. We all slept through the night and she continued to grow. But she still wasn’t completely happy. After each meal, she cried for half an hour. Two hours later, we fed her more formula and she cried for half an hour. And we became very familiar with the tell tale sound that she was going to vomit. It wasn’t fun. She was miserable, and we were miserable. I searched for a better answer.
I would ask about food, but was told that the formula was complete nutrition. Along with this, she was prescribed medications for vomiting, reflux, and constipation. This did not make sense to me. If we only gave our other children formula for their meals, and medications to help keep it down, we’d be thought of as bad parents. So, why would we only give our disabled daughter formula? And the ingredients on the container did NOT sound like complete nutrition to me! They certainly weren’t actual foods, just a list of supplements, caloric fillers, sugars, and water. Definitely not appetizing, and it tasted awful, and smelled worse. I even voiced my concern to some nutritionists who seemed to agree with my complaints. They offered me samples of whole foods “based” or plant based formulas. They were “organic” and “natural”, but still the ingredients read as a list of sugars, fillers, and supplements. This still wasn’t real food!
In the meantime, I was giving her juices and broth. This went very well. She was happier when digesting these foods. I was always afraid to steer completely clear of the formula, so I used it as a base. I started pureeing fruits and vegetables in the blender and mixing them with formula. She was happier and looked healthier. Her skin tone improved, and she worked harder with her therapists. This progress encouraged me to decrease the formula gradually blending more and more with real foods only. Eventually, I was no longer using formula at home, even as a base. However, I still sent formula to school for her lunches, as we felt pressured to conform.
One day the nurse called to troubleshoot about our daughter’s . On Monday she would come in and be happy. After lunch she was crabby for about half an hour, then settled. Tuesday she’d be crabbier longer, and more so on Wednesday, by Thursday and Friday, they wouldn’t be able to get her to cooperate with anything. I fed her over the weekend, and she’d be in a great mood. Then Monday, it would start all over again. I explained to her that I don’t give her any formula at home. I used almond milk or chicken broth as a base to her foods. She was interested in trying this. So, we faxed a request to her GI to change the feeding orders (the paperwork and red tape the school has to follow).
The next week, in school, they could not believe the difference! She was a whole new child. She went through her therapies with little complaint, she smiled, and even laughed a few times. The staff was astounded. We were pleasantly surprised. We had suspected as such, but were never quite ready to take those full steps. I was so grateful for that phone call.
I was a member of some online support groups related to tube feeding. One such group was made up of tube fed adults as well as caregivers of tube fed children and adults. I posted about this experience on the group. Several responded with similar stories, and one adult’s answer stood out. She fed herself formula, as she was unable to swallow anything. She mentioned that she would feed herself a can, then hold her stomach with the most horrific stomach discomfort for a half an hour. She would be bent over in pain. Once it passed, she was okay, but it would start up again after the next meal. She was always tired and weak, as well. Once she decided to blenderize her food and feed that through her tube, she had energy and no stomach aches. She stated that on formula she was surviving, but on a blenderized diet, she was thriving.
We certainly wanted our daughter to thrive! And since she has been on actual foods, blenderized into a puree, she HAS thrived. Her doctors were pleased, and often state that it’s obvious that she is doing well. Her skin tone is great, she’s gained weight, no longer needs the medications, and doesn’t get sick often. You can’t argue with good results.
So, why a blenderized diet? Simply put, balanced nutrition is balanced nutrition, whether eaten by mouth, or pureed and tube fed. No formula will ever compare to the real thing. It seems so simple, but it was hard work finding the answer.
Note: Since our experiences, some choices for packaged pureed real food meals for tube feeding are now available. They were created by other parents looking for the same solutions for their tube fed children. We buy a regular supply of meals from one of these companies. They currently have 6 different meals to choose from, including two meatless and one vegan selection. We keep these stocked up as back up for when we are in a rush, not feeling well, or a quick easy snack for her. We especially use them for road trips and vacations. They travel well and don’t take up nearly as much space as our blender, or the containers of frozen meals I used to make ahead of time for her. While these are well balanced and actual food, they still offer limited variety, and don’t allow for adjustment for nutritional or caloric needs. But an amazing option all the same!
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