Wednesday, October 17, 2012


Over the past month, food has been a big deal around here. Most of the stuff in this post is probably not of interest to most people, but I am going to give a detailed description of what we've been through in the last month primarily for the benefit of other parents going through the process of tube weaning. This is an area where most of us get little guidance from our medical professionals, so I hope our experiences can be helpful. So as I mentioned in my last post, on September 12th we started trying to wean Magnus off his G tube. We had actually not used the tube for most of the two weeks we were on vacation this summer, and he had managed to maintain his weight pretty well by increasing his formula intake by mouth.

Magnus has always gotten most of his calories from some sort of milk-based beverage. For his first year of life, I pumped breastmilk and we mixed in formula powder to boost the protein and calories. When he turned 1, we transitioned him onto a high-calorie medical formula. The nice things about the formula are that it is high in calories (1.5 calorie per milliliter, or about 50% more calories per volume than human breast milk) and has all the recommended nutrients added to it, so you don't really have to worry about eating a balanced diet. The bad things about formula are that it is high in sugar (in the form of high-fructose corn syrup), heavily processed from cow's milk of uncertain origin, and that when spilled (or puked up), it hardens into a crust that virtually needs to be chiselled off. And, of course, you can't just buy it at the store, which makes traveling difficult and planning ahead essential.

So, the plan starting in September was that he would get his calories primarily from consuming about 24 ounces of formula per day, and then whatever small numbers of calories he got from nibbling at real food would supplement that. And this plan worked great until September 28th. On Friday, September 28th, I called Apria, our home health supply company, to inquire why we had not received the formula order I had placed several days prior. Turns out we had not received the order because they never placed it. We had 2 8-ounce boxes of formula to last us until Tuesday, which was the earliest they would be able to get us a new order of formula.

I was distressed, but also saw it as an opportunity. Our next goal after weaning Magnus off his feeding tube would be to wean him off the formula, and he was doing so well with the first goal, why not experiment with the second? I went to the grocery store and bought whole milk, heavy cream, several kinds of full-fat yogurt, and the highest-calorie puréed soups I could find. I made him bottles (yes, he was still--at age 2 years, 10 months--drinking his formula from a bottle) with a little bit of formula mixed with a lot of whole milk. And he drank it without complaint! This lasted for about a day. And then he suddenly didn't want to drink his bottles anymore. He didn't want to drink ANYTHING anymore except water. I tried chocolate milk, strawberry milk, milkshakes, a couple of samples we had of different kinds of medical formulas, and nothing. He wasn't eating much solid food either. I tried buying him several kinds of new cups, but nothing could convince him to drink a milk-type beverage anymore.

In retrospect, I wonder if all that milk didn't make his stomach upset from lactose. His formula is milk-based, but processed to be lactose free.

At any rate, the milk-drinking strike started on Saturday, and continued even after we got his formula again on Tuesday. He was losing weight fast and acting crabby. His breath smelled like acetone, a side effect of when your body breaks down muscle to use for energy when carbohydrates and fats aren't available. On Wednesday morning, I caved in and tube fed him.

That was also the day he started to really eat. He has "eaten" regular food for quite a while now, but just a few nibbles. He would never take a big bite, and would only eat foods that were soft or easy to chew, like yogurt or Ritz crackers. He would frequently gag and puke when eating solids, and would panic whenever he tried to eat something relatively fibrous, like a piece of fruit.

It was like someone had flipped a switch. Magnus had suddenly become an eater. Whereas before, he would eat 2 or 3 bites of yogurt, now he was finishing off an entire 4-ounce cup of it. He started eating in big bites, and was suddenly game to try just about anything. In September I never would have dreamed that he would eat foods such as almonds or plums or October, he happily ate all of these, WITHOUT PUKING. That's the other thing, the puking has stopped. All his life, Magnus has been a puker. He had progressed from multiple daily pukes as a newborn to maybe once a day puking as a 1 year old, and most recently he would have 2-3 pukes a week. As of today, the last time he puked was on Friday, October 5th, almost 2 weeks ago! He has never gone a week without puking, much less 2!

Last Friday, October 12th, we went in for a follow-up and weight check with Magnus's GI doctors. He had lost a pound over the last month, which they weren't too concerned about. They vaguely encouraged us to continue with the tube weaning, but didn't have a specific plan to suggest to us, so I decided to take matters into my own hands and come up with a plan. I bought a digital scale. I decided that we were going to give Magnus 6 ounces of formula through his tube per day (down from his goal of 24 ounces per day before we started weaning) and he would get all his other calories from real food eaten by mouth. So far, he has been able to maintain his weight. If he's able to do that for a couple more weeks, we'll decrease the formula down to 4 ounces, then to 2, and then, hopefully, to nothing.

Having a child who is starting to eat like a normal person has been a revelation. On Sundays, we often go out for pizza as a family. This is pretty much the only time we ever go out to eat together because it only takes about 10-15 minutes to eat a slice of pizza, which was previously about the limit of Magnus's patience for sitting around watching his parents eat. This Sunday, he ate about 1/3 of my slice, plus a couple of meatballs, and of course, because he was actually eating instead of just sitting there with nothing to do, he was occupied and well-behaved. On the way home, we stopped at a neighborhood playground, and found that a local blogger was doing a photoshoot that involved a "donut tree." She invited all the kids passing by to partake, and Magnus did so enthusiastically. Happening upon a "donut tree" in our slightly gritty neighborhood is unexpected enough, but on top of that to see Magnus finally able to enjoy something like donuts like a normal kid was quite an emotional experience for Iggy and me. So much so that I felt compelled to explain to the blogger that we were weaning Magnus off a feeding tube, and I'm pretty sure she really had no idea what I was talking about, but it was really a very special moment for us. Below is a photo Iggy took, and you can see the blog post here.

While it's very exciting to have Magnus enter the realm of normal eating, it has also been challenging. As most 2-year-olds are, he can be very opinionated about his diet, and it's been hard to suddenly adjust to having to meet his nutritional needs by actually feeding him. He might be able to meet his caloric goals with the Krispy Kreme tree, but we need to make sure the other stuff gets in there, too. Thankfully, he is pretty adventurous about what he will try (especially if he sees someone else eating it first). Anyway, we are keeping our fingers crossed, and are hoping to be completely tube free within a month or two. After that, we would still need to have the G tube in place without being used for 6 months before they would remove it. But we're getting there.


  1. WOW! Way to go M and Mama! I appreciate your post as I am always looking for ideas on tube weaning.

  2. Ha, I read that blog! I think the blogger is a friend of Evany's. Small world! And good for Magnus.

  3. I can only imagine much better it is now that he eats with you. Don't worry, he sounds like he's well on his way to diverse eating. I have kids with very picky palates, it's all good in the end. So glad this was relatively painless. and that picture is so cute. Also don't worry about the bottles. seriously, who cares? you have enough things to worry about. he won't be using it in kindergarten! (says the mom who let her kid have a bottle of milk before bed until she was 3.5 years old)

  4. This is simply the best news ever!