It's feeding tube awareness week!
Each day on facebook, there have been questions to answer to spread awareness on feeding tubes and to help others understand what's it like to have a family member rely on tube feeds. I didn't answer the questions on facebook, but thought I would take a little time here to answer some of them.
1. What would be different for me/my child if tube feeding was better understood?
This is a big one. I can't tell you how many times I've felt judged when I don't order Bella food or drink when we go to a restaurant. Sure, some of it's my imagination, but it's hard to know that some people think you are depriving your daughter. The dirty look and sigh I got when we went trick-or-treating (for not letting Bella have a candy bar),...definitely not my imagination. I don't usually let it bother me, but there are times I just wish all this was easier. Trust me, if Bella COULD have a candy bar, I'd let her have as many as she wants. Same goes for the candy offered at the bank, grocery store, etc. Heck, I order the whole kids menu for her if I could. I'm not a mean mom...I promise. :)
I hope people understand that just because Bella may get the majority of her nutrition from a tube, it doesn't mean she's really any different from the Bella she was pre-tube. She's still the same giggly, smiling, happy 2 year old.
Well, sometimes.
2. Why does Bella have a feeding tube?
When Bella turned one, the pediatrician brought up the topic of a tube, because Bella was falling off her growth curve, and had stopped gaining weight. We had a swallow study around the same time, that showed when Bella swallowed, some liquid was going into her lungs. After we started thickening her bottles, she showed more interest in eating, and started slowly gaining weight. About 6 months later, we started having the same symptoms: not gaining, not interested in eating. A repeat swallow study showed she was now getting liquids in her lungs, even with it being thickened.
Consistently getting liquid in your lungs is associated with lots of health risks: pneumonia, infections, aversion to eating. At that point, we decided to go ahead with the gtube (and it was not an easy decision).
3. What's your daily routine like?
Our experience is a little different than some families, because Bella is still safe to eat blended foods that are a pudding consistency. We still feed her 3 meals/day, usually whatever we are having for lunch or dinner, I just blend and spoon feed to Bella. She does tire from eating, and doesn't eat enough orally to sustain her. We don't give her liquids by mouth,since she can't swallow them safely, instead we give them through the tube. We give her water through the tube during the day (which involves being hooked up to the feeding tube for 40 minutes in the afternoon), and while she sleeps she is fed continuously (with a pediasure type formula). The nice thing about the tube is that Bella can get most of her meds through the feeding tube. No fighting with her to take her antibiotics or other meds!
Some days...our routine includes waking up to find her mattress, sheets, pajamas,etc. soaked with pediasure. Blech. Not only is it awful to clean up, it's 26oz of formula and calories that Bella didn't get because the tubing became unhooked or something leaked. No matter how hard you try, it's inevitable. Eventually, if you have a child on a tube feeding, you will feed the bed.
4. How has your attitude and friends/families attitude changed toward tube feedings?
I can't speak for our family/friends attitudes, but I was so upset about Bella getting a feeding tube. Not because of the tube, but because it was an obvious indicator that some things (like swallowing) are worsening. It was one more thing that makes Bella different than other 2 yr olds, and one more area that people don't understand.
I still don't love the g tube. It still makes me angry and sad some days. It's a pain when you go on vacation or a day trip...but I'm so very, very grateful.
I'm so thankful we have a way to feed Bella without stressing her body more. I'm grateful that at night when she gets 26oz of formula, she gets it safely, without causing pneumonia or damage to her lungs. How scary it must have been for Bella, knowing that every time she drank liquid, some would cause her to choke or go into her lungs. I'm grateful she was born in 2009, and not 1909 when tube feedings didn't exist. I'm grateful the feeding tube has helped her grow stronger, happier, and sleep better at night. Seeing this smile, makes me think we made the right decision.
5. Explain a situation where a clinician didn't know about tube feeding and it's impact.
I still don't love the g tube. It still makes me angry and sad some days. It's a pain when you go on vacation or a day trip...but I'm so very, very grateful.
I'm so thankful we have a way to feed Bella without stressing her body more. I'm grateful that at night when she gets 26oz of formula, she gets it safely, without causing pneumonia or damage to her lungs. How scary it must have been for Bella, knowing that every time she drank liquid, some would cause her to choke or go into her lungs. I'm grateful she was born in 2009, and not 1909 when tube feedings didn't exist. I'm grateful the feeding tube has helped her grow stronger, happier, and sleep better at night. Seeing this smile, makes me think we made the right decision.
5. Explain a situation where a clinician didn't know about tube feeding and it's impact.
I'm not sure how to answer this one, since Bella has only had a g tube for a few months. We haven't really run into many clinicians yet that don't understand tube feedings. I know we will, but so far, we've been lucky.
6. What would you like clinicians to know about day to day life with a feeding tube?
So many doctors, nurses, and therapists told me the feeding tube was "no big deal", and maybe it wasn't to them, but for the families it affects, it's a HUGE, HUGE deal. Not only were we putting our daughter through anesthesia again (which is a big concern with Bella), but our entire routine and day to day life was affected. Not to mention all the hopes and dreams we had which needed to change. Not to many people get pregnant thinking "boy, I sure hope my child gets to have a feeding tube" No, it's not the end of the world, but it's not a walk in the park either.
I also wish clinicians would understand how hard it is to be a parent of a child who is nonverbal and tube fed. Babies, if their stomach hurts or they aren't hungry can refuse the bottle. Bella, has no choice. We plug the tube in, turn the pump on, and it's going into her stomach. She can't tell me if her stomach hurts, or if she's nauseated, or if she's not hungry. It beaks my heart, and it's one of the things I worry about the most.
This was a long, long post. Thanks for bearing with me! If you're still reading..thank you! I hope it helped someone understand a little more about life with a child who has a tube feeding. If anyone has any questions, I'll be happy to answer them, either in the comments or by email.
Awareness is a really wonderful thing.
Awareness is a really wonderful thing.
Here is the 2012 video for feeding tube awareness week. Take a minute and watch the video (our family is in it)!
One of the best quotes I've heard in a long time was from a friend of one of the people responsible for this video. It said "I paused every picture of the tubie families...not an anguished, burdened, sad face in the 3:50 video..all blessings."
One of the best quotes I've heard in a long time was from a friend of one of the people responsible for this video. It said "I paused every picture of the tubie families...not an anguished, burdened, sad face in the 3:50 video..all blessings."
