Recently the Feeding Tube Awareness Foundation asked people on Facebook, “What do you wish the general population knew about feeding tubes.” Immediately I had a million things go through my mind, but I held back, waited, and watched what other people had to say. The number of responses were almost overwhelming, and generally very positive. I resonated with all of them. So, I wanted to share, in summary, what “we” wish you all knew about feeding tubes. I hope that this maybe changes some people’s minds, and that they will in turn, share what they have learned to others:
People with tubes live a good life BECAUSE of the tubes, not in spite of them:
Feeding tubes don’t hold people back. They give those who need them a much better quality of life. These miracles of modern medicine give people the ability to live, work, run, jump, swim, laugh, love, etc. These tubes are a sign of life and not reserved for the old, infirm, or dying. Without her tube, Lyra simply wouldn’t be here. Not that long ago, she simply would not have survived. Because of her tube she crawls all over the place and gets into everything. She plays with her cousins, swings at the park, swims with her grandma, and throws balls with her grandpa. Because of her tube she laughs at her Elmo movies, chases after Daddy, and gives Mama kisses. Lyra’s tube GIVES her a wonderful life. It doesn’t hold her back from one.
Tube help people who need them do something their body just isn’t good at:
If you can’t see well, you wear glasses. If you can’t hear well, you might have a hearing aid. If you can’t walk/can’t walk well, you use a cane, crutches, walker, or a wheelchair. Sometimes you need these assistive devices all of the time, sometimes you need them in certain situations. While there are hundreds of reasons why a person needs a feeding tube, it serves the same function as those devices listed above. It helps a person’s GI tract do something that it is not naturally good at. So please, don’t stare or make rude remarks. I don’t tell you that you should only feed your child at home, so please don’t ask me to feed my child that way. Please don’t tell me to feed her in a bathroom or out of the general public eye. A tube is not gross and it is nothing to be ashamed of.
This is NOT the “easy” way and I am NOT a lazy parent:
While I am so grateful for Lyra’s tube, please understand that this is NOT the easy way out. It would have been much easier to breast/bottle feed. I’d be happy to throw some goldfish at her, or to have her eat something I made. It would be great to not have to have a 20 page manual on how to feed her, or an extensive spreadsheet tracking every calorie I put into her body. I’d love to not have to manage the delivery, storage, cleaning, and tracking of medical supplies. It would be AMAZING to get out of the house for a day/weekend/small vacation without feeling like we have to pack up half of the house.
I am also not a lazy parent. When she was an infant I didn’t simply hook her up to her feed, walk away, and go about my day. Just like any parent who bottle/breastfeeds, I held her and rocked her. For awhile, I spent at least 1/3 of my day (probably closer to 1/2) holding her and rocking her. Trust me, there was plenty of bonding time. Also, if anyone thinks that preparing tube feeds is easier than making your toddler a meal is welcome to join me for my morning chaos that starts at 6am. Seriously, I am happy to have an extra set of hands! However, coffee will not be served before 7am because you have to wait until I have time to turn on the pot. Too early? No problem. Come join me for the afternoon feeding chaos that starts around 2:30pm. Again, I am happy to have another set of hands. Also, do you need a spreadsheet to accurately track how many calories your child is getting? No? Well, if you do, I have become very good at creating them.
We don’t know when the tube is coming out, and that is okay:
The hardest, and most frequently asked question I get is, “when can you take the tube out?” The question comes in many forms, by well intentioned and kind people. It’s still the question I hate answering the most, and I am definitely not alone. The simple answer is: We don’t know. We don’t know if Lyra will ever eat or drink enough by mouth. We don’t know if she will be able to take all of her medication orally either. We don’t know if her stomach will ever do a better job of emptying. We just don’t know. People have tubes because they need them, not for fun or because they are just picky. There is no easy answer for when a tube will be removed because there is no solution for the reasons why people have tubes. Force feeding or waiting until they get hungry enough, are not viable options. Most of the time when I get this question I just smile and shrug. It hurts when I see people look sad at my response. It’s okay if Lyra always needs this tube. It really is. The alternative is unbearable.
We are so grateful for feeding tubes:
This goes back to my first point, and comments I have made along the way. Everyone I know who has a child with a feeding tube, or who has one themselves, has quite a story about how they got one. No one has ever said, “oh, during our birthing class when they were talking about bottle and breast feeding, we just decided it would be much easier to put in a tube.” Most of us have watched our children almost die at least once. We have all spent countless hours in hospital rooms, doctor’s offices, and testing facilities. These tubes keep people alive, healthy, and here. Every. Single. Day. I thank my lucky stars that doctors, researchers, and engineers took the time to create these things. I am so blessed that Lyra was born at a time when they are available. I am just so grateful to have her here.
So, there you go. There are the five general things I (and many others) wish the general public knew about feeding tubes. I hope this helps, and I really hope people pass this along to their own networks. Below are some additional resources that I have found helpful.