It’s feeding tube awareness week – something I was so unaware of two years ago. Oh how this sweet girl has opened my eyes! I’ll be sharing about Ivy’s feeding tube all week so if you have a specific question, drop it in the comments!
**Why does Ivy have a feeding tube?**
This is the first thing most people want to know, but it is also the most complicated answer! Ivy has a feeding tube because of a combination of several things.
- People with Down syndrome have low muscle tone and eating is hard work! Ivy would get tired before she was able to drink a whole meal! She was not gaining much weight and was threatening to be labeled ‘failure to thrive’.
- As shown by a swallow study, Ivy’s swallowing muscles are very disorganized. When just a small amount of milk was syringed into her mouth, it would take seven or eight swallows to get it into her stomach.
- She also had episodes of liquid penetrating her airway, though she never fully aspirated on the swallow study. Because of that, any time we’ve tried to give her a bottle we thicken the milk to a nectar consistency.
- Even after months of feeding therapy, she was never able to get the hang of drinking from a bottle. This was very tough because I had to go back to work (for financial and insurance reasons) and yet I couldn’t be away from her because she needed to nurse.
- Her reflux has always been very bad. As soon as she lost the initial sucking reflex that babies are born with, she began to only eat long enough to satiate her initial hunger but then would stop because she knew it would be painful. That led to her nursing every 30-90 minutes around the clock.
These were the initial reasons why we decided that a feeding tube was the best plan for Ivy. She had an NJ (nasojejunal) tube placed when she was just over three months and then a GJ (gastrostomy-jejunostomy) tube placed surgically when she was 5 months old.
We continued to work with feeding therapy in hopes that she would be able to eat enough by mouth to ditch the tube. When she was 10 months old, she had to have surgery on her airway. The pain caused by surgery sent our progress backward. Since then she has had an extreme aversion to any food or drink and has been 100% tube fed. We plan to do an intensive feeding therapy program this summer to hopefully work our way to eating by mouth!