Parents create Real Food Blends for feeding tubes

The Chesterton, Ind., couple were scared, confused and scrambling for whatever information they could find, even if it came from “Dr. Google” or online searches. “We felt helpless,” Tony recalls. “It still gives me the chills thinking about it.” 

At a children’s hospital in Ohio, they waited for 72 hours while doctors tried to figure out what happened to AJ. Those early days were filled with “tears, big words, misdiagnoses and desperation,” the couple says.

Finally, they were told that AJ had “malformations of his cortical development.” 

“What does that mean?” they asked.

AJ had a brain abnormality that affected his normal processes, including the ability to swallow, among other developmental problems. The couple figured that their bright-eyed little bundle of joy merely had reflux, or colic, or possibly he was just a fussy eater.

“We were wrong,” Julie says.They had AJ transferred by ambulance to Ann and Robert H. Lurie Children’s Hospital of Chicago.

“We wanted to be closer to home and have the best care possible for him,” Tony says. More tests were done on AJ, who suffered more seizures. A month after his initial seizure, his eating habits worsened. The baby was listed as NPO, or nil per os, a Latin phrase meaning “nothing through the mouth” to avoid choking or aspiration of food into his lungs. Doctors prescribed a feeding tube. 

But there was another problem for the couple, who were prescribed a typical diet of feeding-tube “formula” for AJ, like with most children and adults with feeding tubes. This formula is traditionally high in corn syrup, preservatives, additives, synthetic vitamins and other sources of protein.

“And a bunch of other ingredients you can’t pronounce,” says Tony, who began a crash course in feeding tube nutrition. The couple couldn’t imagine feeding their baby the same exact formula diet day after day, month after month, possibly for the rest of his life. AJ also wasn’t settling for it, reacting with constant problems to various formulas and methods. Nothing worked for the couple, or for AJ, who would vomit up to 10 times a day.

Out of desperation, Tony and Julie wondered what would happen if they fed AJ real foods for babies his age that were blended into their own personalized formula. 

Keep reading in our winter digital-only edition of Chicago Special Parent.

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