Tube Feeding with a Blenderized Diet of Whole Foods

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

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It won’t surprise most of you to know that breastmilk is the best first food for most babies. It is the perfect balance of fats, nutrients and immune builders for our newborn infants. Breastmilk is even more important for  NICU babies and infants with special needs. However the stress of dealing with the NICU and special needs can put a lot of stress on a mama. Adding to that stress the idea of using a breastpump every 2 hours, it can be overwhelming and exhausting, yet so vital.
When our middle daughter, Bella, was born we knew she was going to have some issues, but we didn’t know to what extent. After nearly two months in the NICU and hours of  speech therapy it became painfully obvious that she wasn’t going to be able to breastfeed.We had to deal with this fact and move on. Bella underwent surgery to have a g-tube. This is a simple tube that is inserted through an incision the abdomen. To feed Bella we attached a tube with a syringe filled with breastmilk to the little button in her tummy. I was diligent in using my breastpump and was able to feed her exclusively on breastmilk for the first year of her life.

Around that one year mark, we decided to look into supplemental foods to add to Bella’s diet. The doctors recommended Pediasure. I did a little more research and found that you could use whole foods in blended forms for g-tubes. Natural organic whole foods for my special needs daughter  made more sense to me.
I found a supportive group of parents on the Yahoo Group Blenderized Diet that were able to provide so much information. I contacted a holistic nutritionist and set up a meeting to discuss Bella’s dietary needs. Though she would not be covered by our insurance, she was well worth the money paid out of pocket.  I did have a dietician through our GI doctor, but they would only provide information in regards to calorie intake with formula. They did not support the idea of using whole foods in a blenderized form for g-tube patients. I was open in discussing this with my GI doctor but was surprised to learn he was not very informed on the topic and would just refer me to the dietician in the office. Some doctors feel that a whole foods blenderized diet can raise the risk for bacteria and infection, they are also concerned about food getting stuck in the tube. I felt these were small risks when compared with the benefits of a whole food diet.
I started slowly with a base of breastmilk. I kept a food journal and kept a regular schedule of what medications and supplements went with each feeding. I started by introducing 2 TBS of banana with 60cc’s of breastmilk, we then added foods like avocado, sweet potatoes. Our nutritionist recommended foods like beets, wheatgrass, apricots, quinoa, and goats milk. We used careful calculations figuring we needed 50 calories per pound with a goal of 650 calories per day. So each day started with me with my Vitamix calculating, measuring and storing her food for the day.  The Vitamix was an essential part of being successful with a blenderized diet. The food really must be broken down into a liquid form, not just any blender would do. When adding nuts, seeds and using fruits such as blackberries it was very important that there be no pieces that would clog the g-tube. To build Bella’s immune system we added supplements such as fish oil, colostrum, probiotics, and elderberry syrup. We always followed with water.
Since we were providing a nutrient rich blenderized diet using organic products were essential.
Later Bella was given a Zevex infinity pump for her feedings. This pump regulated the flow of the food. She had severe reflux and she needed to be fed very slowly. A large number of her feedings were given overnight. This pump was great. It made feeding Bella much more convenient and less time consuming. It worked well with the blenderized diet. I just needed to make sure it wasn’t too think and check on the consistency. The Zevex pump would be sure to beep and let me know if wasn’t pushing the food along properly.
I don’t believe a blenderized diet will work for every tube fed infant. It worked well for our family. Our daughter was gaining weight and growing well on the blenderized diet. It was not as convenient as pouring a bottle of formula into her tube would have been. So we constantly had coolers and ice packs with us. However having a child with any special need is never convenient. It’s more about making the best choices for your circumstances. Money is also an issue to consider. If you have to pay for your child’s G-tube formula it can be very expensive. However if your insurance pays for the formula, then choosing to feed organic, whole foods to your child is definitely more expensive.
I felt feeding Bella whole foods was really beneficial to her health. The life expectancy for a child with her disability of Walker-Warburg Syndrome is under one year of age. Bella lived for 16 months. Support is essential to be successful at feeding your special needs g-tube child a blenderized diet. Start with your doctors to get their viewpoint, then ask your dietician. If they lead nowhere, keep researching and find a dietician that will work with you and your family needs.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

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12 thoughts on “Tube Feeding with a Blenderized Diet of Whole Foods”

  1. Wow!! Bravo to you, mama! I, too, fed our daughter expressed breast milk through an ng tube and then a g-tube for 1 year. I do not know many mothers who did the same. I remember entertaining the idea of a whole foods g-tube diet and was met with strange looks and much discouragement. I let the idea go. So great to read about your experience. Really amazing. You gave your daughter the best you could give her! I am a part of the carnival, too. Julie at http://www.whatiwouldtellyou.com

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  2. So glad to read about someone else with experience with a blenderized diet. We did that for my son for his night time feeds when we were weaning him to oral foods, and now that my daughter has a feeding tube and we’re running out of frozen milk, we’re discussing moving towards blenderized again, at least most of the time, rather than some crazy commercial formula. I’m part of the carnival too – http://www.ourlittleacorn.com

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  3. I had never heard of a blenderized diet with a g-tube – SO AMAZING! It makes so much sense to use whole foods. And I ditto your love of the Vitamix 🙂

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  4. What dedication! My NICU baby never had to have a G-Tube, but those NICU photos took me back! You gave your sweet girl a longer life because of your dedication to her. Hugs, mama!

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  5. That’s incredible. I’d never heard of using whole foods in a g-tube before, either, but it makes so much sense and clearly was the healthier choice for your daughter. Thanks for bringing this to light for other families who might need the information or support.

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  6. I had never heard of using whole foods in a G-tube before either! Silly that I didn’t~it makes so much common sense. Real food is such a simple answer. I have always loved the idea of feeding and love being very closely linked together, and here you showed love with whole foods (blended!). You are so smart to have found a supportive group that was doing the same thing; peer support is invaluable, particularly when we do something ‘outside the box.’ Props, momma. Great post.

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  7. Its so great to read about how you researched your option and then went with your gut feeling of feeding your sweet girl whole foods. I agree with you that that is the best option, but when faced with the same challenges it is so easy to go along with the mainstream commercialised medicinal practices and so I commend you for following your gut. Amazing story, and valuable information for other mothers in the same situation. Thanks for sharing!

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  8. Wow – this is really impressive. Such a great story of how breast milk followed by detailed knowledge of nutrition was important in helping a little girl with some very unusual special needs. Thank you for sharing.

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  9. Good for you! I ran into this same issue with my father who suffered a traumatic brain injury. I could not believe the HFCS chemical filled sugar water was the only option for someone who was dying. I created a blendrized formula for him and saw such a vast improvement in his physical healing I then knew what I had to do and 6 years ago I set out to create a shelf stable organic whole foods feeding tube formula. This week, I received my first shipment of Functional Formularies Liquid Hope, the worlds first commercial whole foods enteral formula. This is my fathers legacy to the world and I am at peace knowing his vast suffering was not in vain ♥

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  10. I hope you don’t mind but I used your picture to help get my first petition (Change.org) against GMO’s used in hospital baby formula and feeding tube formulas. I love your website and I am so happy you have this up. The picture of the baby with an G tube is very real and I hope you don’t mind… Thank you!!

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