Wednesday, January 15, 2014

Eating with a tube

Feeding has always been a struggle for my son. He never took to the breast or bottle very well, and after he recovered from his first surgery at 9 days old, a swallow study showed silent aspiration. When he was a month old, we were transferred from Children's Hospital of Pittsburgh to the Children's Institute, an inpatient facility a few miles away with a specialized focus on feeding. At the Institute he worked with therapists 3 times a day to try to relearn how to eat. Since the surgery he was getting all of his feeds via an NG-Tube.

NG-Tube -- 1mo

He was beginning to make some progress feeding from a bottle, but then two weeks into this program, Judah returned to the hospital due to oxygen desaturation and arrhythmias. This led to a chain of events resulting in a trip to the Cath lab to place a stent, and a reperfusion injury leading to a Cardiac Arrest, ECMO cannulation and shortly after a tracheostomy and the placement of a Gastrostomy-tube. The G-Tube operation placed a Mic-Key button directly into his stomach, and all of his feeds now go  through it via a feeding pump. The g-tube made an incredible difference in the weeks to come. Judah had always been a tiny, underweight baby. A common problem with CHD babies is their hearts have to work so hard during feeding, that they end up burning more calories than they take in. The g-tube allowed Judah to really put on weight, and some times it seemed like it was all going straight into his giant round cheeks.

g-tube in the tub

Months later, while we were still living in the hospital, one of the nurses came into our room and asked if my wife and I would be willing to speak to the parents of another patient. We had seen them in the halls and waiting room many times and knew their story, they too had a baby with a CHD, and she was about to be diagnosed with "failure to thrive". Though a bit scary for them as it would require another surgery, we recommended the g-tube and told them about our experience, and were able to calm their fears a bit. When we ran into them again many months later, they were grateful to us and able to tell us how much the g-tube had helped their child grow too.

Today, now that Judah is home, he still gets all of his feeds via the g-tube. It started with straight breastmilk, and then moved to a breastmilk/formula mix, and now we are looking to the next phase, beginning a blenderized diet of real food pureed to allow for all of the nutrients he needs, and less of the processed sugars and fats found in some formulas. Judah still has feeding therapy with mommy every day, but with the difficulty swallowing and the stenosis in his throat, now the focus is for just taking food into his mouth, touching and tasting the textures and flavors. Though not always his favorite part of the day, it is building the necessary framework for a future eater.

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