Why a G-tube?
In the Spring of 2010, Thomas was diagnosed with failure to thrive. This was a heartbreaking diagnosis for me. I felt like it was a personal failure on my part. At that time, Tom was refusing to eat from a bottle and would not eat from a spoon at all. He would have good eating days and bad eating days, but more bad days than good. He was hospitalized several times that Spring and Summer for dehydration because he just refused to eat or drink. I would spend hours a day trying to get him to eat and only get two ounces in him sometimes. The situation was desperate; I was taking syringes and squirting liquid down his throat to keep him hydrated.
He was not on the growth chart at all for weight.
Baggy onesie pre-tube
After months of trying to figure out why he wouldn't eat and getting no answers we ended up in the hospital again for dehydration in August 2010. We agreed to allow Thomas to get a gastronomy (G-tube) tube inserted at his EUA that was scheduled in just two weeks. It was not an easy decision but we desperately wanted him to get the nutrition and hydration his body needed. We felt a g-tube was our best option. Tom was discharged with a NG (Naso-Gastric) tube for two weeks until it was time for his scheduled EUA.
At home with his NG tube.
Getting the Tube
It is pretty simple. Tom came home with a feeding pump that would allow you to pump the liquid formula into the g-tube by set amounts of time. After the G-tube is surgically inserted in the hospital you stay a couple of days to make sure it is functioning correctly and to allow you to learn how to run the pump. The nurses teach you how to do everything so that you will be prepared to take over once you get home.
The day we were discharged from the hospital a pump and all the feeding supplies were delivered to our home. A nurse was also sent to our home to get the pump up and running, and to make sure we were set up and ready to do the feeds ourself. The pump you use in the hospital is quite large and you will likely have a smaller pump that is a bit different for home use. It will be on a huge IV pole that will be constantly in the way though! But the process is fairly straightforward. You "prime the tubing" by running the formula through to the end of the tubing so you are putting only formula and not pushing a bunch of air into your child's belly.
My chunky little tubie last summer.
We came home with a schedule of several 60 minute feeds and a long, continuous night feed. The night feed was a disaster for us. I was never comfortable with him being hooked up while he slept. Oh wait! Tom never slept, so maybe that's why it didn't work? What we did do is "feed the bed." That's when the tubes from the pump become dislodged from the child and continue to pump food into the bed as scheduled. FUN! Tom was not enjoying his nightly milk baths.
So I called our pediatrician in a panic and told her the night feeds weren't working for us. She said as long as we get the required ounces of formula into him it didn't matter. Music to my ears! So we did several 60 minute feeds a day and into the night. He handled the feeds so well ( i.e., he didn't throw up) that we kept increasing the speed of the feeds by decreasing the amount of time it took to pump the same amount of formula. Eventually, we got down to pumping seven ounces in twenty minutes.
Months later, a nurse in post-op from one of Tom's many EUA's told us that if he could tolerate a feed that quickly he could probably switch to a bolus feed. This nurse was also the mother of a tubie and showed us how easy it was to do a bolus feed.
How does a bolus feed work?
With music and small toys around he is usually very cooperative.
Our set up
I always have a towel down underneath us when we are doing a feed. I have already destroyed one couch by saturating it with spilled formula and vomit for a year. I will not sacrifice another!
I make sure I have all my supplies and some small toys to occupy Tom's busy hands for the time it takes to complete the feed. It's less than a ten minute affair but that can feel like years to a little one. We also listen to relaxing music. It's a good idea to create a feeding playlist so a favorite song doesn't come on and cause your child to pop up in excitement and spill formula everywhere. (True story) Small toys are essential! You don't want your child waving a big toy in the air because it WILL hit the bolus and spill formula everywhere.