The Chesterton, Ind., couple were scared, confused and scrambling for whatever information they could find, even if it came from โDr. Googleโ or online searches.ย โWe felt helpless,โ Tony recalls. โIt still gives me the chills thinking about it.โย
At a childrenโs hospital in Ohio, they waited for 72 hours while doctors tried to figure out what happened to AJ. Those early days were filled with โtears, big words, misdiagnoses and desperation,โ the couple says.
Finally, they were told that AJ had โmalformations of his cortical development.โย
โWhat does that mean?โ 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.
โWe were wrong,โ Julie says.They had AJ transferred by ambulance to Ann and Robert H. Lurie Childrenโs Hospital of Chicago.
โWe wanted to be closer to home and have the best care possible for him,โ Tony says.ย More tests were done on AJ, who suffered more seizures. A month after his initial seizure, his eating habits worsened.ย The baby was listed as NPO, or nil per os, a Latin phrase meaning โnothing through the mouthโ to avoid choking or aspiration of food into his lungs. Doctors prescribed a feeding tube.ย
But there was another problem for the couple, who were prescribed a typical diet of feeding-tube โformulaโ 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 canโt pronounce,โ says Tony, who began a crash course in feeding tube nutrition.ย The couple couldnโt imagine feeding their baby the same exact formula diet day after day, month after month, possibly for the rest of his life. AJ also wasnโt 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.ย
