Feeding Tubes and Where We are with Abi’s Eating

To say my daughter is a fighter is an understatement. And yet, every “battle” she has faced she has done so with enormous courage and more often than not, genuine excitement. Her warrior spirit is in her smile, her enthusiasm, and her overall zest for each day.

The story of Abi’s eating is a bit too lengthy to tell here, but in a nutshell, she came home eating pureed foods fine but aspirating on liquids. Due to her low weight and inability to drink liquids safely, we were admitted to the hospital almost immediately after entering the states. After 9 days, we went home with an ng tube (through the nose) – later to be replaced by a g-tube (through the stomach) – and the directions to give medical formula, water, and meds through the tube, and continue giving her solids to eat by mouth.

abi going home - ng tube1

Almost immediately though, Abi developed an aversion to eating. She started spitting out ANY food we put near her and she became uninterested in eating all together. In fact, she really didn’t want anything near her mouth at all.

I mentioned this to our pediatrician and we immediately began feeding therapy.

My goal was for Abi to begin eating pureed foods again, and then eventually learn how to drink liquids safely. After seeing a few different amazing therapists, we were eventually referred to a woman I now call our feeding-guru, Linda Tyson. Instead of putting Abi in her chair and beginning each session with a focus on her mouth and face, she would lay her down on a mat and work on her entire body, her ribs, her neck, her shoulders, all of which (turns out) are connected to her ability to eat. She also addressed the fact that Abi’s mouth was often wide open, she breathed loudly, and she needed a bib almost constantly.

As she worked on Abi’s body, she taught her the word “swallow” and within a fairly short amount of time-Abi was closing her mouth more, managing her saliva (and not needing a bib all the time), and breathing with less noise. Incredible!

We now believe Abi stopped eating because the tube gave her a much needed way out. Her history of aspiration had most likely made eating very stressful and perhaps even terrifying.  Additionally, nearly all of Abi’s teeth came in after coming to the states- so not only was it a stressful situation, it was a painful one.

In our very first session with Linda, she told Abi, “We are not going to cry in here. If something makes you sad or scared we will readjust. Feeding therapy is supposed to be fun and we can make eating fun too. I will always listen to you and never force anything.” She has kept that promise. Abi trusts and adores her and LOVES going to feeding therapy.In addition to breathing quieter and not needing a bib all the time, she can now also eat safely, drink safely (!!!!!!!!), and chew soft foods. And while we are still working on the quantity of bites and the quickness of her swallows, we are making progress week by week.  Just today Abi ate half a veggie straw in therapy! This is huge!

Beyond the skills Abi’s gained, the most important improvement is that eating is now a HAPPY event. She WANTS to try new foods and is excited when she gets to take a few bites. THIS IS HUGE!!

Here she is practicing chewing with Linda:

feeding therapy 1

All this to say, it’s a slow and steady race and we are so very thankful for the progress we’ve made.

SIDENOTE: The g-tube is a great permanent solution for many people and I actually really like it. It’s quick and easy and comfortable for Abi. If, however, she CAN eat and drink safely and wants to do so, then we will absolutely work in that direction.

So cheers to feeding tubes, amazing feeding therapists, and to Abi for working so hard and having fun the whole time.

Mary Susan