This is Going "Tubie" Great!
National Pizza Day: February 9
International Waffle Day: March 25
National Split Pea Soup week: November 10-17
National Tequila Day (Mama's personal favorite): July 24
Taco Tuesday: Every week, everywhere
AND... one that actually matters.
Feeding Tube Awareness Week: February 4-8
With over half a million children and adults sporting feeding tubes, it's so important that we raise awareness of their benefits! The purpose of Awareness Week is to educate, promote and share. There are over 350 medical conditions which might lead someone to getting a feeding tube.
Fun fact: Picky eater isn't one of them.
There are many variations of tubes out there.
The mission is simple: Deliver nutrition support when all else fails.
Some of the worst comments you could say to someone with a tube or their caregiver would probably go something like this:
"They'll eat when they're hungry enough. I know a picky eater too. Have you tried [insert any food]? Everybody eats that! They just need a little more discipline. I would never make my loved one use a tube. Must be nice having the tube so you don't actually have to feed them."
I have heard every single one of these comments and my simple advice is to never ever use any of them.
Like ever.
Last year for Awareness Week I posted the blog entry "What's With the Tube?" and if you want to know the background of our super-tubie Ronin, it will explain a lot of our whats and whys.
Long story short, a combination of sever reflux, motor control, low muscle tone in his core and sensory aversion made it nearly impossible for Ro to orally eat. (And if he was able to keep it down, it would be all over the bed or back of the car 15 minutes later...)
A feeding tube for Ronin was an easy decision to make. Last year he had a g-tube (into the stomach) and this year he is repping a gj-tube (into the stomach & small intestine). This change was made because although the g-tube was helping him get enough calories, everything in his stomach could easily come right back up and BOOM- Vomit. Everywhere.
The gj-tube has been a life saver because Ro can take nutrition and medication through the j-port (small intestine) and we can still "vent" him through the g-port (stomach). Venting is letting air out of the tummy- like burping but way cooler!
Feeding tubes are never permanent though some people do rely on them indefinitely. Nasal feeding tubes go through the nose down to the stomach or small intestine, while ones like Ronin's are placed directly into the stomach, small intestine, or both!
There is so much great and important information out there but I'll mainly be focusing on Ro's journey here. If you'd like to learn more about feeding tubes in general, click on the heart below!
Tubie definition: An extremely cool person who happens to use a feeding tube. (All tubies are extremely cool, while not everyone who is extremely cool gets to be a tubie.)
Each tubie has their own story and advice, but I thought we would share some myths and truths from our family's experience with Ronin's feeding tube.
Myth:
Having a tube means Ronin doesn't eat by mouth.
Truth:
This kid LOVES food. His taste buds are completely on board with the whole eating thing but his digestive system is where the problem lies. Ronin does enjoy bottles and purees. Everything is digested just as it would be without having a tube. The only difference is we don't have to rely on his oral intake to supply enough nutrients and calories for the day. His favorite food is Gramma's Swedish meatball gravy. Just like his mama.
Myth:
Ronin will eat on his own if he is hungry.
Truth:
Nah, he won't. There are hundreds of reasons people need the assistance of a feeding tube. For Ro, coordinating his swallow without choking is a major concern. For others, feeding tubes may still be necessary although they appear completely healthy! Some disabilities and illnesses are invisible- you never know just who may have a tube.
If you're thinking "but they look so healthy, why would they need a feeding tube?" the answer is YES! They are okay because of that tube!
Myth:
Being connected to a tube must be so restrictive.
Truth:
Ronin's pump supplies fit nicely inside of a small backpack and it's very easy to take on-the-go. If anything, it's the looks from others that don't welcome errands. No, my child is not hooked up to a leash. It's a feeding tube, thankyouverymuch.
(I spy a Ronin tube!)
Myth:
Tube feeding should be kept in private.
Truth:
Stop. Stop. Stop. If 'Joe Shmoe' can eat his Chipotle in public, chewing with an open mouth and wiping his hands on his pants- maybe he is the one who needs manners. If someone is eating with a tube, chances are they've been through a lot- and they don't have time and energy to waste on whether others are comfortable with it. A tubie's gotta eat! If it makes someone else feel awkward, it's their own issue.
(I spy a Ronin tube!)
Myth:
But what if you just tried this one thing.
Truth:
This one is frustrating. It can come from close loved ones to complete strangers. When talking to someone with a feeding tube, it's not advised to tell them about a cousin's friend's sister's daughter who was a picky eater until they did [fill in the blank]. THIS is not okay. Feeding tubes are a last resort to provide nutrients for someone. The decision has involved nutritionists, specialists and surgeons. If there is an alternative solution, believe me tubies have heard it & tried it. And they now have a feeding tube.
Myth:
Eating with a tube is lazy.
Truth:
Have you ever been to Taco Bell? I guarantee anyone with the ability to eat an entire #6 with no problem would prefer that to a blended diet through a feeding tube. And some tubies DO eat taco bell but still need their tube to sustain nutrition levels. I have actually been told "how nice you can feed Ronin this way because getting kids to eat is a nightmare!" ...I can't even start with this.
Myth:
Eating with a tube is too much work.
Truth:
It is work, that is true. But being well fed is well worth it. Like anything, once tube feeding is part of a routine it's no big deal.
Myth:
It must be so painful to have a feeding tube.
Truth:
I don't know if you've seen a picture of Ronin lately but he is very content. In general, feeding tubes should not cause pain after initial placement. What does look painful is seeing Ro gag and vomit after every oral feeding and experience constant acid reflux. Other medical conditions may be the cause of someone's pain, but a tube should help to alleviate symptoms- not worsen them.
We've covered some myths and laid down some guidelines, so now the question is...
What should you do when you see someone with a feeding tube?
I recommend saying something like hello.
It's usually not a good idea to stare. It can make someone self-conscience and you'll look like an idiot.
If you want to say more than hello, something simple like "wow that's pretty neat" or "would you mind if I asked you a question about your tube?" is fine. If someone doesn't want to talk about it, they have an out without feeling disrespected or violated.
Sometimes (even with good intentions) saying the wrong thing to a tubie can be inappropriate. Here are some examples of what NOT to say-
I'm so sorry you have that.
What's wrong with you?
Whoa, what is that?
That's weird.
Don't you hate having that?
After all, you wouldn't walk up to a complete stranger in a restaurant and interrogate them over what they're eating and why... would you? (If you are doing this, please stop immediately)
If you have a general interest, I suggest doing a little online research to see how feeding tubes work and why someone may have one. The link I provided up top is a great place to start. If you still want to know more, ask questions as long as they're respectful. Use common sense, remember the golden rule, and for-the-love-of-Todd, do not stare.
Ok so now we've talked about you.
Let's talk about ME!
Forgive me.
Forgive us- parents of tubies and tubies themselves.
If someone we love has a tube, it's typically not the only medical deal going on. There are other diagnoses, therapies and appointments we have been to. There was a struggle before the tube was placed and there is still more work to be done. The hospital is very familiar to us and medical supplies are always in use. We are tired and stressed.
But we are also strong.
So when we hear conversations regarding the common cold and screen time concerns, our empathy is burnt out. When we see posts complaining of mild setbacks in typical development, we got nothin'. And it isn't that we don't care. We just have a different perspective. Our batteries are on low and we have to reserve our patience and strength for our own fight. If I have to see one more debate on "breast vs. bottle" I'm going to flip my lid.
(I spy a Ronin tube!)
FED!
Fed is best. Period.
(... and we got a tube for that.)
When we're not advocating or at a doctor appointment, there are some pretty cool perks to having a feeding tube!
Ronin can eat all night while he is asleep thanks to his tube. He can also burp out of his tube- which is sometimes hilarious and very impressive! He gets to take meds without having to taste them, and all of his food and medical supplies are delivered right to our door. Tube buttons and extentions can even glow in the dark! And when he's not hooked up, we call him "going wi-fi"... which sounds pretty darn cool.
Mama's learned some neat tricks too like how to crush pills with a syringe and a little water. Syringes have so many unconventional uses too! Need to put icing on a cake? Use a syringe! Jell-o shots? Syringe! Creative art projects? Perfectly measured pancake batter? Filling water ballons? Syringe!
Of course the greatest benefit of all is having a tube to keep Ronin healthy and nourished. There are no tricks that could compare to that.
Just ask our friends! We leave you with pictures of some of our fellow tubies. On instagram, we follow them and people with other medical conditions. It has been comforting and inspiring to read their stories and we want to share them with you.
Brace yourselves. We warned you that all tubies are extremely cool.
Thank you to our friends who sent us pictures to share!
You can easily access their instagram page by clicking the pic.
We promise, this is going "tubie" great..
"We spent hours trying to feed Mateo, but it was too physically exhausting for him to keep up the amount of food for him to thrive. Because of his gtube he is thriving and much less stressed out about eating." @emilybrambila
"My number one thing about Enzo's GJ tube would simply be 'a clean GJ tube is a happy GJ tube'!" @enzo.hendo
"Super Chase!" @2momsandoursuperhero
"Homemade Keto Birthday cake down the tube because everyone should have cake on their birthday!" @ajm1016
"This is me with Nancy the NJ tube! After years of suffering with nausea, reflux, dysphagia, delayed stomach emptying and constipation (since birth), I reached the stage where I needed a feeding tube in Dec '18 to maintain my weight. It has been a rollercoaster, but without it it I wouldn't have been able to return to work... still undergoing further tests... Always trying to raise awareness!" @chronically_laura
@teedddii_
"My baby has a swallow deficiency and we have a Mic-key button." @ladykhz
"Teila has so many odds against her but thanks to her tube she is getting stronger and thriving, defeating them odds every day and I'm proud of my tubie baby." @carla.alice85
@clairemorethanjustmum
@kayte.ray
"#1 thing I want people to know about me is... I am more than what meets the eye and you will be surprised at the amount of strength that has been born out of my struggles!" @ngfashionista7
"Ozzie originally had to get a G tube last July due to complications from hydrocephalus and infantile spasms. We got it converted to a GJ in September... [all due to] a genetic mutation, PPP2R1A. His mutation caused cortical malformations and a very rare brain disorder called Pachgyra that affect muscle coordination, feeding, etc. Having his GJ tube has literally saved his life!" (Read Ozzie's full story on his page!) @lifewithozzie
"Meet Gypsy. She's 3 from San Diego and wants everyone to know that tubies are cuties!" @slyveezy
"My belly has two buttons and one of them keeps me alive! This is Evie aka LittleFoot" @littlefoots_journey
"The one thing to know is without his tube he would have a lot of unnecessary hospitalizations. (Doesn't drink and eats only small amounts of pureed foods taking a long time to eat, so would be hospitalized for dehydration)" @marshallsmemoirs
"Emerson is almost 8. She's eaten exclusively by feeding tube since the beginning, ...loves tasting everything. Faves include turkey jerky, lollipops, cheetos and popsicles... I'm also a big advocate of real food as opposed to formula. I believe giving your child healthy real food is one of the greatest gits you can give them if they don't have any issues that wouldn't allow it." @emmyisastar
"Fatima had an emergency g tube inserted because her button came out. Feeding tubes are just another way to eat and it's because of this some of our kids are alive today." @fatimas_pws_journey
"For a lot of people, deciding to have a feeding tube put in your child is a traumatic decision. There was never a decision for us, it was a necessity when Eli was injured... We did feeding therapy, but due to the lack of muscle control and coordination he is unable to swallow properly, liquids go into his lungs (aspiration) instead of down his esophagus. He has been 100% tube fed since he was 5 months old." (Read Eli's full story on his page!) @pippyt07
"Here's Joplyn! She has a G-tube" @joplynsjourney
"Our tubie, Saylor" @saylorblayne
@parasympathy_
@tessag82
"My tube saved my life! Protected my lungs from aspiration." @tubie_kids
"Xavier is a 9 year old boy with polymicrogyria. He has been on a g-tube since he was a year old, due to delay swallowing." @superheroxavier_
"My tubie is Nellie age 7 who has jejunostomy (Mickey button) and we are from Liverpool England. She's been a tubie since 9 months old. #becauseofthisican" @emmyloum
"Caileb had two major strokes in utero. Because of them he has CP, epilepsy, chronic respiratory issues, and a feeding tube. He is such a joy and his smile will light up a room despite his medical journey." @cailebs_courageous_journey
"Here is a picture of Cesar getting lunch at the lake!" @kara_s.c
"In the beginning, I didn't realize you could still live and go places and have a life with a tubie. Find what works for your baby and your life and make tube feeding easy for you!" @metabolic_mama
"Here is my tubie Jackery. He has had a g-tube since 2 months old, where he silently aspirated. He is 19 months old and we are still working on feeds. He isn't a big eater by mouth." @jackerys_journey
"This is a photo of our little Henry with his ng tube. Henry first had an ng tube in NICU and actually came home bottle feeding but it became more and more stressful for him (and us) so eventually we ended up with the ng tube... We really hope one day Henry will begin to enjoy food a bit more, he's trying purees and has had the odd treat of chocolate! But not enough yet to lose the tube." @twinketwinkeourlittlestars
"[her tube] does not bother her, it's just the way she eats. Although, sometimes it does make her a little sleepy to have a full tummy!" @sarahhaysek
"This is my daughter Harper! She has Trisomy 18 and has relied on a feeding tube since birth! She had an NG tube for the first 2 months and she's had her G tube for 10 months and counting!" @thejohnstonsblog
"Violet's tube has transformed her life and health, we love it!!" @wingingit_withtwins
"This is Lily Rose. She has a PEG tube because of swallowing and coordination issues." @life_with_lilyrose
See? What did we tell you... Tubies are so cool.
Thank you ALL for sharing with us! We love "tubie" your friends.
Love, @avoiceforronin