This week is Feeding Tube Awareness Week. It is one of my favorite weeks of the year because I have a chance to talk about the little device that has changed our world: Ezzy’s feeding tube.
Esmé has never had an uncomplicated relationship with food. She had a temporary feeding tube during her first week of life. She was discharged from the hospital using a bottle to eat, but she really never ate well or expressed interest in eating. We used to have to set alarms to wake her to eat…and she would never really eat much. She threw up all the time and she barely grew. Eventually she started to sound as if she was purring all the time.
It turned out that she was aspirating. Both the milk she was drinking and the subsequent reflux was going into her lungs because she did not have the tone, strength, or coordination to protect herself. It got so bad that at 3 1/2 months she experienced cardiac and respiratory arrest from severe double aspiration pneumonia. (I wrote a long post about this experience that you can read here).
This was the point at which she had her permanent feeding tube placed. And while, at the time, it seemed like such a frightening thing, it was this tube that saved her life. Without it she never would have been able to eat enough to sustain her safely.
I have created a video telling Esmé story of tube feedin…in it you can see the changes that occurred after she had her tube placed….
I love her feeding tube. I love that it keeps her nourished. I love that it helps us keep her hydrated even when she is sick. I am so thankful that it allows us to be certain she gets all of her medications every day no matter what.
The hardest part of about life with a feeding tube isn’t the tube, it is other people’s reaction to it…their lack of knowledge and their fear.
Many of my readers know that I am the Chief Communications Maman at Feeding Tube Awareness Foundation and I am so thrilled to work with them. This year I was so pleased to help FTA produce a Feeding Tube Awareness Week video that explains so much of what I want everyone to understand about Esmé’s tube: it is LIFE!