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Feed her body, feed her mind!

The word “blends” has become a noun in our house over the past three years. It is defined as the concoction we create in our blender for Kimberly to ingest through her g-tube.  We didn’t start out using real food though.  As crystal clear as it seems now, that option was not even tabled following surgery. We dutifully watched the DVD provided by the GI department; met with nurse, dietician, and surgeon and were praised for how quickly we understood how to operate the pump equipment and prepare the formula.

We often found that the doctors/specialists we encountered had low expectations of the parents. Some delighted in the engagement we offered, while others seemed threatened almost.  Either way, with us, there was going to be a dialogue. We had questions and concerns and wanted explanations. Except for the feeding. I truly didn’t know what questions to ask. I had fought the g-tube placement for nearly a year. I wanted to know that we had exhausted all options to get Kimberly to eat orally and willingly. We took her to Richmond,VA to the feeding clinic. We tried every distraction we could imagine. We offered whatever she would eat, even if it was the same exact food all day, day after day. We spent hours every day in front of her high chair…hoping for another bite. Just one more, baby, please?  She was 3 years old and 21 lbs. when she had the surgery in October 2009.  I spent two nights with her in the same bed at UNC children’s hospital. Discharged, several containers of Elecare hypoallergenic formula in tow, we headed home.

Ready to head into OR, they let me hold her hand until she was under (not for the faint of heart)

Our "home" for almost three days

Our “home” for almost three days

We began bolus feeds (pushing the formula through a 60 ml syringe) during the day and pump feeds at night. We had a strict schedule with timing and quantities to ensure we were meeting the goals for caloric intake. CALORIES. That is what it was all about. And I mean totally.

Slowly she built up an inability to ingest anything more than very small quantities at a time. It absolutely baffled us how she could chug a few ounces of water if really thirsty or how she could have eaten a 4 oz yogurt for lunch on a good day before, but now, now we could not give her more than 2 oz of formula every two hours!  Brad kept logs of every feeding.  The vomiting increased to almost daily. Especially if you even thought of trying to sneak in one more ounce. It truly made no sense. The Drs response was “delayed gastric emptying”.  I have to say that even typing this makes my blood pressure go up. The solution from their camp…low dose antibiotics to increase motility. Wow. I never would have imagined I would do this to my daughter. My girl who I had slowly led back from an inflamed, leaky gut after a unnecessary round of antibiotics at 3 months old….we’re we really going to do this?  CALORIES.  Yes, we did it. Briefly.

So she was still on Prevacid, now antibiotics, and using the formula. Insult to injury: the pump would often clog at night or she would get a kink in the line. In the morning I would look over at the bag and it was half full. Crest fallen, I knew that was one more day we were not going to get the calories. Desperation was the mother of invention for us at this point. I was done. Done with the drugs. I had researched the effects of long term PPI use (Prevacid) and knew we had to wean her off and now. The reduced stomach acid was certainly not helping her digest anything so the medications were really opposing each other at this point. Done with the formula. With no food allergies, there was absolutely no reason why we could not feed this girl real food.


Apple picking in Charlottesville

We started out buying baby food. We were scared. The formula was such a disaster and the vomiting was so incredibly difficult to witness. Absolutely heart breaking. All we wanted to do was feed our child and let her grow. The baby food went fine. She did not vomit. I bought a Vitamix (they even offer a discount when used for medical purposes). I made a blend of food and fed my sweet girl. No more pump. Her gut could finally rest at night. No. More. Vomiting. None. I think we started with two syringes (120 ml) four times a day. We calculated the calories in our blend and used full fat products such as coconut milk, oils, and the like to make sure the numbers were high enough, the rest was just more awesome food. Chicken, sweet potatoes, bananas, spinach. In no time were could increase the number of boluses. That was 3 years ago this month.

The Prevacid weaning took two months.  That is no small task. We added digestive enzymes to her water syringe and that seemed to prevent to reflux symptoms from returning.

I can say with confidence that this decision was our single best in the feeding journey we have been on. I do so look forward to the day when she no longer needs the “button”, but for now I feel great about how well we can feed her body. It has without a doubt fed her mind. This nutrition has allowed her development to improve in ways I wasn’t sure it ever could. The more outward signs were shiny hair, clear skin with good color, a brightness in her eyes…but more importantly to us her language/speech and other areas of cognitive function improved. Even her sleeping improved a little :-).

***editorial comment:  I have since researched blenderized diets and their use for g tube fed children and adults and am sad to say that the majority of the medical community does not support this. Rather, they claim potential issues such as tube clogging, bacteria, and minimal control over nutritional composition are reasons not to do it. Seriously. I’m not making this up. Here is the nutritional composition of Elecare formula we were using. It is 55% corn syrup and cost $500-600/mo for our little one. Not covered by insurance. The forum – blenderized diet group on yahoo – is an excellent resource. Share with anyone you know that can benefit. Please!

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  1. Dani, you and Brad are amazing parents. I feel so good about your progress as I saw the beginning when you were so frustrated as any parent has a right to be.
    I know it has been a long struggle and good for you to have the strength to keep up the research and intelligent to carry it through. I am so proud of both of you. Virginia too. Kimberly too.

    • Thank you Jeanie.

  2. I couldn’t agree more with Jeanie! You are all such amazing parents, sisters, love bugs, and friends. I love you all so dearly and am so thrilled you are writing this blog. I know so many others will learn and be inspired by your journey and love. So thankful four you and all of your beautiful family. Keep being you!! Oh and kiss my baby godchildren!

    • They send kisses right back! Having such loving freinds and family like you make the ride so much more fun!

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