Eli Is Beginning to Eat
By Jody K. Vilschick

Eli is two years old, and beginning to eat, finally. Until age 20 months, he received all his nutrition via a gastric feeding tube, as he completely refused to eat (on his first year birthday everyone ate his birthday cake but Eli).

Eli was underweight until he was diagnosed with NDI and hospitalized when he was five weeks old. He left Johns Hopkins Children’s Center with a feeding tube and received full nutrition through formula being syringed in during the day, and pumped in during the night. (He is close to the 50^th percentile in both height and weight, which is where we’d expect him to be.)

Through Eli’s gasteroenterologist, we were hooked up with a feeding therapist at Johns Hopkins’ Kennedy Krieger Institute when Eli was 12 months old. She trained us to do "feeding therapy" with Eli. We first started with four bites, rewarding each bite taken with playing bubbles or a few minutes with a favorite toy, and ignored behaviors such as spitting out food, which we wanted to discourage. When he was 21 months old, he ate (during the day) up to 20 ounces of smooth foods (yogurt, pudding, stage three baby foods) and at about age 24 months had just begun eating, and swallowing, hamburger, rice, Cheerios, vanilla wafers, peanut butter, crackers, pizza, and spaghetti.

Because of first his nasal-gastric (N-G) tube, and then his gastric tube (which was surgically inserted when he was 8 months old), and the emphasis on giving him syringed formula and water, we never offered solid foods after a half-hearted attempt when he was three months old. Eli also had reflux, and of course, the N-G tube’s presence in the back of his throat made eating and swallowing unpleasant. He missed some important developmental stages with regard to eating and getting used to swallowing textures. If I had to do it over again, I would leave his N-G tube out during the day, treat him like any other child (except for allowing him all the water he wants), and introduce solids in the normal sequence. My husband and I came to rely on the syringed formula feedings; there’s nothing like a full belly to get a baby to take a long nap.

Eli learned to chew mostly by observation. We offered him Cheerios, crackers, or whatever we thought would work. Until about age 21 months, he let them melt in his mouth and then spit them out (lovely little messes all over the place). We made really exaggerated chewing motions with our mouths and even, to strangers’ horror, chewed with our mouths open to show him how our tongues moved and what chewing was all about. To spur his tongue movements I even tried to get him to "lick his nose"—it became a game. I demonstrated endlessly how to bite off a cracker or a cookie. One day it just clicked with him. The bigger problem for us was getting him to swallow. We didn’t know how to go about demonstrating it for him to observe...my husband tried touching his own throat/neck and making swallowing noises, but now Eli grabs his throat as if he’s throttling himself and makes loud gagging noises. Lord only knows what people think we do to this child!

When Eli was 22 months old, we discontinued all daytime formula tube feedings, and concentrated on his eating. We worked with a formal feeding therapy session at least once a day, but also gave him opportunities to play with (or eat) food on his own. When he was 23 months old, something clicked. One week he ate everything, even during the therapy feeding sessions, (which are usually hellish experiences for all of us). Whatever we were eating, he wanted. When he asked for broccoli (which I was nibbling on at the time), I almost fell out of my chair. And he ate and swallowed the broccoli! He seems to prefer fresh vegetables, such as carrots, broccoli, lettuce, and cucumbers. Despite the low calorie count of these foods, we encourage him to eat—as much for the nutrients as to balance out the more high-sodium foods we let him eat.

Now, we bring him to McDonalds to play on their "Playland" equipment. But first, he must eat some hamburger and drink some vanilla shake. After playing a while, we’ll take a break, and return to the shake and a few fries. It’s a treat for all of us to see him eat. He now will admit being hungry, and say yes or no, depending on what it is we’re offering him. I credit his eating so well to being exposed to other children his own age while he was in daycare and when we’re with friends’ children. This is one category in which peer pressure is a good thing.

We are, however, concerned about weaning him off of his nighttime feeds, and eventually off the gastric tube entirely. We recently reversed our plan, and now are decreasing nighttime feeds, replacing the nutrition with daytime syringed feedings through his gastric tube, in addition to whatever he’ll take on his own or during therapy feeding sessions. Our goal is to eventually discontinue his nighttime feeding altogether and get him used to having a full tummy three times a day.