Augi: Eating with Distraction
By Kris Schwander

To eat or not to eat? That was the big question I faced every morning when I woke up. Will my son eat today, and will he keep it down?

My son Augi was diagnosed at birth with NDI. At the time we didn’t seem too concerned because we thought, "How hard could it be to give him a little extra water?" And then it turned into a lot of water and even more water. He was constantly drinking.

When Augi was 5 months old, he started to wean himself from the breast milk I was giving him. He refused to eat anything after 2:00 p.m. except water. I couldn’t believe it. I had to trick him at nap time and try to feed him while he was sleeping. I would do the same at night. It was exhausting.

At 6 months old I started to give him baby cereal. He seemed to take to it just fine. He had weaned himself off breast feeding so I started to pump, still determined to give him the breast milk even if it was from a bottle. Some family members thought I was nuts to do this but I felt it was my way of giving all I could to him. So I kept at it, and around 8 months we started baby food (fruit). It was then I feel that most of the problems started. He hated it, everything about it. The texture, the taste, everything! He refused to eat it. My nutritionist said that most kids with NDI are late eaters and if I back off a little now they would eventually eat. At the time I thought she was crazy but later I found she was right.

So I backed off the food for a while and concentrated on giving him his bottle. When Augi was 8 months old we were with my family on vacation. They got a first-hand look at what I was going through on a daily basis. With all the pumping and trying to get him to drink it was wearing me out. My stepmother kicked me out of the house one day and kept Augi. That was the day he learned to drink Similac. She weaned him off breast milk cold turkey. It was the best thing for both of us.

That continued for a while. He was still resisting the milk but I found ways around that, like feeding him when he was tired or asleep. My nutritionist gave me other ways to bump up his calorie intake. We added Polycose to his water and milk. It gave him 23 calories per tablespoon of carbohydrate calories. It doesn’t seem like much but when you’re adding 8 tablespoons to a liter of water or milk it starts to add up. We also added canola oil to his milk. That was really gross. You could never get it to mix well. That added about 120 calories per tablespoon. Which was a lot, especially if at the end of the day you were able to add 1 tablespoon to his daily diet. You can also add the oil and the Polycose to any food you serve. At 9 months, he started to wean himself from the bottle. I think he just wanted a faster way to get his fluids. So I concentrated on teaching him to drink from a cup, which he picked up right away. We continued like this for a couple of months.

It was just after he was a year old when I dusted off his baby spoon and decided it was time to teach this kid to eat. So I went at it. First I started with very dilute baby food and water. He coughed and gagged and most of it always came up. He was rejecting the texture. But I kept at it, three times a day. Gradually I added more and more cereal until he was actually eating the regular consistency. He really didn’t like it but he also wasn’t kicking and screaming to get out of his chair. I used distraction as a method of getting him to eat. We would bring his favorite playthings to the table; jumping up and down and making faces was always a big hit. And when he was paying attention to something other than the spoon I would put a spoonful in his mouth. He always looked betrayed but gradually he began to swallow. I even let him blow out an old birthday candle 15-20 times just to get lunch down. Thinking back now, I can't believe I let him do that. It just goes to show you my frame of mind at the time. I was trying to do anything to get him to eat. These distractions, although tiring and frustrating for me, worked for him. I started adding mashed banana to his cereal, more distractions. I also started to add mashed avocado because it was very high in potassium and fat. He hated that at first but gradually got used to it.

The most frustrating part for me was that no sooner did I get down Augie’s lunch, he would find that tiny bit of fruit that wasn’t smooth, start gagging and bring everything back.

I recommend three things:

1. Stop while you’re ahead! Sometimes less is more.
2. Even if he does spit it up, remember the most important thing is that he was eating it in the first place.
3. Don’t let ‘em see you sweat. Try not to show your frustration when they do spit up.

I needed to keep reminding myself of that over and over again. Either that or lose my mind.

The gagging and spitting up went on for a very long time. It seemed I was constantly covered in baby food and milk. But I kept pressing on, using my distractions, and tricks. There were days that he would eat just fine and other days hardly anything at all. Those days were hard for me, by that time I had learned to dread mealtimes and was afraid I would project that onto my son.

It kept progressing very slowly and sometimes we would have setbacks. I just kept coming up with distractions; for instance, one day we would go to the park and play with the water fountain and the only way he could see the water come up is if he took a spoonful of baby food. It worked. And then another day we would go to the zoo and I would feed him while we watched the animals play. When all of that grew old we would go down in the basement and look at Daddy’s tools. I know to some people, these methods seem extreme, but in my particular circumstances it seemed to work because he was learning to eat and it was not as stressful for him.

Between all of that I was trying to get him to eat solid foods like Cherrios or cheese. He was 17 months at the time. That was very slow going. He hated the feel of something in his mouth. And then one day it all stopped. He refused to eat his baby food, he refused to eat solids. We were beside ourselves with worry. He was basically weaning himself off baby food but still did not know or like to eat solids. So we bumped up his Polycose and canola oil and tried everything to get him to eat. He was still drinking his milk (about 25 oz. of milk, half of it whole milk and half Similac). We went through about 3 weeks of this, which was very stressful. And then on Christmas Eve at dinner, I was eating a sandwich with Augi on my lap and he started to take bites. I couldn’t believe it. And he ate a lot (for him). It was the best Christmas present we could have received, because I knew we had just crossed over the hump.

He continued on that way taking little bites, sometimes gagging and spitting them up but gradually he kept most of it down. His portions over time kept getting bigger and bigger. And we would try different foods. Like spaghetti, tacos, grilled cheese, turkey sandwiches. All low sodium. Those are some of his favorite foods of the week. Next week it will be completely different. On rare occasions we have pizza but I know at the end of the day he will be drinking more water.

Augi is 28 months old and now eating well. Sometimes we still have those days when he refuses to eat, but I think now it’s due more to my bad cooking than anything else. I don’t think he will ever be a great eater, but I don’t know many toddlers who are. It was a long and frustrating road but it gets better, much, much better. I’ve read that the first two years are the hardest for NDI kids and their parents. I think one of the biggest reasons is that you wonder if your child will still be drinking Similac when he’s 40. That is what I wondered every time he would gag and spit up his lunch that I’d spent 45 minutes trying to get him to eat. And eventually even I realized how ridiculous it was. It gets better! If there are days when you are feeling down just think back to your child’s life six months before. You will realize the great strides you have made in his eating.

The most important thing you can do for your child and his eating is to be in constant touch with a nutritionist. Jackie, Augi’s nutritionist, helped us tremendously. She gave us great ideas to bump up his caloric intake, and she didn’t mind when I called her, all stressed out, and told her I can’t get my son to eat. She is a very calming influence on me and I really appreciate all her help.

Thinking back, there are only a few things I would do differently. I wouldn’t have backed off so much in the very beginning when he first refused food. I would have tried to do just a little every day to get him used to the idea of eating. Also, when he was a baby, I didn’t put my fingers in his mouth as some mothers do to comfort their babies. I think it would have been a good idea to do so only to get him used to having something in his mouth at an early age. My pediatrician told me to keep him away from germs—she didn’t want him to catch the flu. And the most important thing would have been to erase the worry lines from my face as I was feeding him. To never let him know how stressed I was at the time. It’s so important to let kids eat in a stress-free environment so you can avoid problems later. And if you are having a hard time with that, like I did many times, let your husband, wife, or even neighbor take over for a while.

This is what eventually worked for me. Hopefully you will find some bits and pieces that will work for you as well. But before you do, please talk to your doctor or nutritionist about it. Because every child is different and special in his or her own unique way.