Changing the Face of Fed
I am Mama to a 2.5 year-old tubie named Adeline, who has been tube fed her entire life. She’s had nearly every type of tube; OG, NG, NJ, G, and now GJ. Addie uses her feeding tube to receive about 50% of the calories she needs to grow, to get medication, to keep her hydrated, keep her blood sugar stable, handle some of the acid in her belly, and to even decrease vomiting and gas. Her feeding tube saves her life, but is also a real pain in the ____.
Since it’s Feeding Tube Awareness Week , I was inspired to spread awareness through imagery and quotes from other Tubies. I’ve been overwhelmed with the response I’ve gotten from my hashtag #ChangingTheFaceOfFed. Full disclosure, I didn’t completely come up with this on my own, but was inspired by the Changing the Face of Beauty campaign. It’s a nonprofit committed to equal representation of people with disabilities in advertising and media worldwide. That movement is working; the 2018 Gerber baby, Lucas happens to have down syndrome. So I’m jumping on the bandwagon of #changingtheface but I am doing it for my people, my favorites, TUBIES!
Being a tubie, it can often be invisible, under clothes, and is not always obvious. And if the tube is visible, the person may not LOOK sick. My hope is to change the perception of what it looks like to have a feeding tube through imagery and quotes. I wanted to share with the world the perspective that a tubie (or their caregiver has) about gaining nutrition. Having a feeding tube is life changing, life giving, and life altering. Without further ado, here are the faces and voices of those with a feeding tube.
Having a child with a life threatening condition changes you. It brings out strength in you that you never knew you had, it makes you appreciate the little things in life, it makes you fear that every memory you make together may be your last, and it teaches you that miracles do exist.
-Author Unknown (Submitted by Ryker's Mama Shawna Ammons)
When I stopped focusing on the “normal” way to feed your child and started focusing on the fact that my daughter was able to receive nutrition in spite of her conditions, I started to realize the amazing gift that this tube is. It’s not something to be pitied. It is something to be forever grateful for.
Tube feeding is a way of life for us. We would love for it to be accepted just like breast feeding or bottle feeding because for many families tube feeding is our normal. As long as baby is fed that is all that matters in the end.
Angelina ( born at 25 weeks and 2 days)
I want people to know that being tube fed doesn’t limit anyone. I’m a teen, in high school, with a great group of friends, and actively involved in extra carricular activities. We are what a tube fed teens looks like!
It’s easy to get bummed sometimes about having three tubies. But when I look back and see how far they’ve all come, I wouldn't have it any other way.
The ngtube saved my sons life
Lukey wants the world to know that having a feeding tube doesn’t mean you’re sick or that you can’t live a normal life. He wants the world to know that thanks to his tubie, he’s a happy and HEALTHY boy, growing big and strong while he figures out this whole eating by mouth thing! He loves his tubie and so do we!
This is my life! Some days are hard and I just wish that I could be a typical kid and not have my feeding tube and Broviac (I am also TPN dependent) but I know that they are saving my life! I wish people would understand we are all different but we are all beautiful! I wish people would embrace each other for their differences because being different does not make us less! Spread awareness! Feeding tubes=LIFE!
Preston Sheraw (age 14)
“the tangle is real"
- Mama of Hugh Hadleigh
Being tube fed as a teenager is hard because there’s a stigma surrounded by not eating. People are unaware that disease takes away the ability for people to enjoy, absorb & stay alive with food. Feeding tubes save lives.
My son aspirates and needs a tube for liquids. Sometimes he will do anything to try and get a drink, going so far as to get into the dog's water. It’s heartbreaking, but it’s getting better with time. I find this feeding journey to be very isolating at times. Finding others who understand that journey makes a world of difference.
Fed is best. My son has exceeded every expectation and does not let his tube stop him from achieving his goals.
keep on pushing forward, keep advocating, remember you are doing what is best for your child. You would not be here if multiple doctors didn’t deem this necessary, you aren’t crazy, even if sometimes it may feel like you are.
The world should know that tube feeding is a different way of eating but not a lesser method. We take a different route to the source- but we get there- we are fed and that's what's important.
Our daughter, Rowen, was born with a congenital heart defect and a condition called laryngomalacia, making bottle feeding impossible. Tube feeds have allowed her to grow and develop, which wouldn't have happened otherwise.
tubes are the reason I am living they are the reason I am thriving. If I couldn’t vent from my tubes I would be a lot sicker. Embrace your tube fed child because that little survivor is stronger then most people. Feeding tubes save lives.
Tubies can be pretty picky eaters. Don't be surprised if a smash cake ends up not being smashed.
Never let anyone make you feel bad about how you feed your child. Be proud and honored that you are able to keep them healthy and alive.
The world needs to know that tube feeding saves lives! It requires discipline, patience, strength, interrupted sleep, but in the end, to hug, to hold, to watch your child live, love, grow and overcome... It is worth every minute, every mess, and every struggle.
We were scared at first, but tube feeding saved Mia’s life so now we love it.
Tube fed kids are amazing! They are so brave, strong, courageous, smart, beautiful and perfect in every way. I wish people noticed them for who they are instead of how they are fed.
It has been a beautiful fight. Still is.
Submitted by Lauren Farmer
Feeding tubes save lives. I want to spread awareness so my daughter can feel normal walking down the street without having hairdos of people staring and pointing at her.
When life hands you lemons, throw them in a blender, make a smoothie and feed it to your Tubie
What I want to tell a tubie parent having a bad day- you are not alone! The kindness, compassion and understanding I have received from complete strangers who know how it feels is truely something special. I now consider some of these people my closest friends. So reach out- we are all on this crazy ride together!
-Amy, Mama to Evelyn
The hardest part has been letting go of what i thought ny infant would be like. The more i let go of that idea in my mind, the more i'm able to appreciate my little baby for who he is- a sweet smiley curious baby boy, who just happens to be tube fed!
Initially I feared Jamison having a g-tube would hold him back from enjoying the full quality of life but it never stopped him from endless giggles and smiles. To the parents on their bad days, days that I had very often remembering to find normalcy was what kept me sane. It's not a matter of how they eat, but that they are eating.
Tube feeding is Hard! 24 Hour feeds, no breaks, hooked to a backback or a pole. Telling your child they can't share your food sucks. The day to day struggles get easier and become a routine and they aren't quite as hard. It gets better.
For our family, tube fed meant the difference between being able to graduate the nicu and come home or staying in the hospital indefinitely while they learned to master bottle feeds. Tube fed meant our family could be together. I am grateful that my sons were given the option of feeding tubes so they could start life outside of a hopsital!
Gastroparesis is a life stealing disease, but I'm not going down without a fight. Being tube fed allows me to take my life back.
Our g tube saved us from a 54 day NICU stay. Our tube is the only reason we could safely come home as a family of four. It is the sole reason our baby can safely eat and grow, and I am eternally grateful for it. It’s scary at first, but just seven months after getting our tube, it is just part of life!
We are forever grateful for our sons Gtube, it saved his life. Tube feeding isn't something to be afraid of or feel ashamed of, it is a miracle that has positively impacted many families lives and helped their children to thrive just like our son, Gabriel.
Tube feeding saved my little boy who can’t swallow safely anymore
Always trust your gut over anyone else. Never stop searching for an answer for your child.
After the fear and uncertainty subsided, I’ve learned to appreciate the beauty and strength everyday in the face of this little angel
As a mama, my body prepared to feed my baby, but he can not suck. That is the hardest part for me as a woman.
Mamá de Francisco.
Mostly that people are afraid of the feeding tube. It is the best decision we have made so far for her health.
Jimmie Holt, Father of Raelyn Averie
Tube feeding has saved our son's lungs from chronic aspiration. It was a terrifying and so far from what we have ever known. Looking back, it was the best decision we have ever made.
The tube is a lifeline for many kiddos. Everyone has differences and we should embrace them.
A loving mom of a tubie
Remember that when you’re having a bad day to look down at your miracle, look at that button that’s providing them the nutrients their bodies wouldn’t receive otherwise. That button is a beautiful device that lets our children strive and be healthy.
Milla(Tubie) & Natalie(mom)
I had a tough time with not being able to nurse my baby but I realized that if a feeding tube is what she needs to thrive and grow then I’m all for what’s best for her. I’ve had difficult days but great days too and it’s a learning process.
A feeding tube is amazing. We have traveled the world, went to the theme parks, and on many airplanes with pump in hand. People ask we answer, but we don't let it stop us!
Something we always tell our daughter is that she has two belly buttons. And that she has to leave it in so that we can feed her!
Stay strong... It can be a long bumpy ride but it's worth it all.. Don't let other people make you feel like you should hide a feeding tube, it's a life line why should it be hidden?
Hardest part of tube feeding is definitely replacing the tube, another difficulty is keeping her little hands off of it !
There is nothing easy about tube feeding. It comes with a lot of supplies and crazy diet plans made by professionals. We become more of nurses than mom's at times.
I have been tube fed since I was a baby (first G, then ND while waiting to switch to GJ). I hate when others automatically assume that it’s negative or gross. Of course, I’d rather not need it, but without out it, I wouldn’t be here today. Being alive is a pretty great thing.
Fed is best. As long as baby is full and happy it should not be looked down upon on how they get their food. We support tube feedings
“who and what you are will be determined by you, not your circumstances.”
Unknown - Submitted by Lauren Farmer
It was hard to see him have a tube in but one day I was able to watch them put a new tube in and he barely flinched. I was so worried about it but he really didn’t mind! (Except he hated that tape mustache).
I would love people just to ask me why evie has a tube and not to stare !
"This feeding tube saved her life and is her lifeline. It’s my absolute best friend and simultaneously, my worst enemy."
my feeding tube doesn’t define me! I am still the same girl, friend, adventurous teenager as I always have been. only better now because my tube gives me a way to continue to thrive and live safely and independently! It’s nothing to be afraid of, tubes may look strange to people who have never had to deal with them before, but if you have questions just ask!
The NG tube was a literal life-saver for our daughter, Leah. It enabled her to gain every precious pound required for her kidney transplant.
It’s not an easy life but it’s what our little one needs to be happy and healthy which then gives us parents, happiness. We do what we have to, to assure our sons lives to the fullest.
Rykers mom & dad
It may be hard but god only gives his hardest battles to his strongest soldiers.
Just because I have a feeding tube doesn’t mean I can’t try some cake!
The feeding tube changed my son’s life. He aspirates and was sick often with respitory issues. He is a healthy 2yr old now and is able to breath easier.
Sometimes, I can tell people are staring at my tube. I try not to let it get to me. I encourage questions, so I can educate others and show them it’s okay to be different.
Getting a G-tube has allowed us to live a more normal life and more importantly outside of the hospital!
This NG tube was the vessel in which our baby was lovingly fed. It was what made it possible for him to come home from the NICU to be with his family. It is what kept his body going while he learned how to feed by mouth for the first 5 months of life.
I would people to understand unsolicited advice is unnecessary. I hear of so many caregivers who struggle with how to respond to suggestions to make their child "just eat" when it is not that simple.
Fed is best no matter what that may look like. These babies are miracles, whom have to work harder than anything to just survive.
A feeding tube saved my baby. His health is so much better now. Some days are rough, but it's what's my best for my child. Fed is best.
Tube feeding quickly becomes the new normal. We do our best not to let it slow us down. When poles/bags are forgot, we improvise!
The world should know that getting a feeding tube isn’t by choice. You need it to live.
Having a tubie has been a blessing with many challenges. I have learned to put my shyness aside and be the voice of my baby. I have grown to realize that the only way I can protect my baby is to advocate for him regardless if I am constantly being rejected or unheard
Our little man is Growing and Living life to the fullest, because of the feeding tube.
It is not desirable, ideal, convenient or easy. It is a difficult and often lengthy road. But a truly good and loving parent will do whatever is necessary to ensure their child is nourished and properly fed.
Tube fed kids are superheroes! My daughter has been through so much, but you wouldnt know it by her big smile and constant laughter.
every child is gifted , they just unwrap their packages at different times
The future is worth it. All the pain. All the tears. The future is worth the fight! #gratefulformytubie
If you ask my 4yr old what his button is he will reply his "life button" Why you ask? Its life changing and life saving for him and he is so proud of it.
Before I became sick I never thought I would need a feeding tube, and when the doctors told me I would die without one I was still so against it. What would people think of me? Would I get made fun of? I don’t want this thing on my face... But I’ve realized that feeding tubes save lives and don’t ever be ashamed to get yourself the nutrition that you desperately need. Feeding tubes save lives.
Schedules can be hard and complicated, and going somewhere now takes a level of planning I had never imagined. All I have to do is look at my daughter's smile and it makes all the effort completely worth it.
Before Syd got a g tube I worried constantly about her weight and nutrition. Now, I know she's getting everything she needs and she's grown so much. All of the related struggles are worth it to see her healthy and happy.
How ever way you feed your baby just know you are feeding them the best way you can and you are building them up to be big and strong. I am proud to tube feed my baby anywhere I happen to be at the time of her feed. Without my daughter's feeding tube she wouldn’t be as strong as she is today.
Summer & her Mum
A tube fed baby isnt scary, or weird. They're special, and just do things differently
Our daughter is very interested in the feeding tube process, we joke that she will be able to do it herself! Finding a hands free option really helps- like this music stand!
Having a feeding tube is bittersweet, its helping him grow but it also means your baby isn't a "normal healthy" baby. I am thankful for it and i resent it at the same time, i miss seeing his little face whole but i know it needs to be there and help him grow.
My little tubie, not just another pretty face.
The hardest part was accepting my daughter needed her tube to help her grow. But after almost a year on the tube I see how much it has changed her life for the better and am so thankful for having a happy healthy 3 year old now.
The hardest part for me was trying to get the people around us to understand why she was tube fed. It’s just not something that is easy for most to understand until they deal with it themselves. To a tubie parent having a bad day, sit down, listen to that feeding pump pump food into your child’s belly, and just appreciate that they are here with you and can tolerate feedings even if it’s not what you expected when you found out you were pregnant, it’s okay!
As a tubie parent some days will get hard and some days you may feel you failed but never give up. Stay strong and focused for your tubie.
The hardest part of tube feeding is having to stop everything even your own meal to feed a baby. It is a strict schedule that never varies. The hardest part is travelling in the car.
When you have a tubie child, you learn to get creative. In the beginning I wasn't sure how I would feed him when we were out on the go. Then I learned his pump worked great in the van, Don't stop taking your tubie places, enjoy life with them!
our little man getting a feeding while he is having fun fishing. The feeding tube doesn't stop him from having fun.
Tube fed is being unique and not the worst thing in the world!
It has saved my daughter's life and I can feed her without the stress of forcing her to eat.