Feeding Tube Awareness Week 2020 – Tuesday’s Topic: Nutrition

There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Henry eats exclusively through his food button.  All his nutrition is received through his tube and without it he very likely would not be alive today.  So it goes without saying we are so thankful for his feeding tube.  But I won’t lie – we have moments where I feel completely overwhelmed.  Those moments are fewer and farther between than they used to be.

For Henry we (read “I”) chose to do a homemade blenderized diet.  When we first started all this I hated feeding him formula from a can.  It didn’t seem like “real” food to me.  That’s a judgement, I know that, and speaks more to my feelings of inadequacy than to the nutritional content of commercial tube feeding formulas.  I couldn’t even feed my own baby… and that really triggered me.  Perhaps if we’d had a diagnosis I would have felt differently, but that’s hypothetical and I try to stay away from “what if’s”.

We continued with homemade blended meals because it turned out that Henry has several food sensitivities that made typical commercial formulas not work for him.  It was a game changer when we started blending his meals.  It was almost 8.5 years ago and I still remember the difference clearly.  He went from meals that took at least 45 minutes, frequent vomiting and us walking on eggshells, to thriving, eating more and feeling better.  We still struggle with “what” and “how much”… but as Henry gets older and plays a more active role, we are working on a new dynamic.  Trusting and consent around his body are big ideas we are working with currently.

What I do know is that thanks to his feeding tube Henry eats WAY more nutritionally balanced meals than my other son (7 years old… processed meat & raw veggies please!).  Henry’s meals provide the nutrition he needs to thrive… and that’s all this mama can ask for!

 

 

Feeding Tube Awareness Week 2022: Friday – Educate & Celebrate!

Friday, February 11th
Make a plan to educate 5 friends, family members, or media sources about tube feeding. What obstacles have you or your child overcome? Celebrate the successes. Show your tubie love!

Today I’m in celebration mode! Here are a few moments that are particularly meaningful to me…

Thank you everyone, for your comments, support, kindness, and care. Cheers, Shelley

Feeding Tube Awareness Week 2022: Thursday – Support

​Thursday, February 10th
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

This year I’d like to take a different approach to this topic, one that’s more reflective of me and my journey. I continue to love what I wrote in past years, and will weave some of those stories and thoughts here, yet I’m drawn to musing on my own shifts this time.

This how I started in past years…

“Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.”

When I reread this now, I have so much compassion for this person. She was so scared, so overwhelmed, so certain that she wasn’t enough; wasn’t doing enough; couldn’t be enough regardless of how hard she tried (and cried). It was only when she reached her proverbial limit did she cry in front of anyone else. All other displays of perceived “weakness” were hidden far out of sight. It didn’t matter how kind anyone was, her inner dialogue said “if only they knew… if they really saw me they wouldn’t say those nice things”. I pushed away so many offers of connection and care, because I thought they were sign my weakness and my inherent “not good enough-ness”. I HAD to be good enough. I felt like Henry’s life, and my life by extension, meant I ALWAYS had to be fine. These mistaken beliefs started long before Henry, but boy was my experience with him really good evidence for what felt like their truth. I didn’t understand that I could be good enough AND feel overwhelmed / desperate / lost / need help. It was okay to ask for things, as long as I was “in control”. Any waiver from that [illusion] felt like I was loosing my grip on everything.

“It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.”

Ah… connection. So many times I felt alone while standing in a room full of people. I did the best I could. I can say that now… and it’s been a hard fought journey to be able to say that honestly. I’m still reckoning with some of the things that happened in Henry’s early years… and I likely will be for years to come. It was sheer force of will and fierce tenacity that got us through some of those days. Now I am more able to experience the feeling of support and connection – real, honest, vulnerable, messy connection. I still struggle to show up honestly and vulnerably in my hardest times. A part of me still believes people will go running from the room in horror. But a larger, stronger part of me knows different. That it is in my hardest times that I learn and offer the most valuable of gifts. And I thank so many people for their support along my way.

“I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.”

Ha! I cried like a frickin’ baby afterwards! I’m still amazed I contained as well as I did and I’m honestly curious if I looked as much a mess as I felt!

It’s almost 12 years on now and I’m still scared about a lot of things. For all my talk of faith, the fear is still there in a lot of ways I’m sure many parents can relate to. I’m scared kids will be cruel. I’m scared he’ll get laughed at or someone will see him eating through his tube and say its gross. Scared he will get picked on or that some well meaning (or not so well meaning) adult is going to be rude.  I still want to bundle him up, go back inside our bubble (ha! and to think I first wrote this line long before covid), and keep him safe.  But I know that’s not practical, realistic or helpful.

My list of things that I appreciate has expanded a bit over the years…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

– when our sitter and Henry’s support person learn how to help him eat… it matters.

– when people make note of the empowering language we use (for example, we don’t feed Henry, we help him eat)… it matters.

– when people refrain from asking him if he’s eating… going to eat… has eaten recently… or any other such questions… it matters. Henry eats at every meal, the same as I do. If your curious about him eating by mouth specifically, then ask me privately. But seriously, don’t ask him. It’s not helpful. (okay, I can feel my blood pressure going up… clearly this still triggers me).

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that I can truly feel that care now, in a way I never could before. I love that I now actually have friends that when I messy cry (like reeeeally messy cry), they cry too. Then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Hugs, Shelley

Feeding Tube Awareness Week 2022: Wednesday – Benefits

Benefits
​Wednesday, February 9th
What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your or your child’s life? Dispel myths that people have about tube feeding.  

I often struggle with this question, because beyond “the benefit is my son is alive”, what else do I say…? But nonetheless, I always comes up with something :).

For us, tube feeding means more ease. It means meal times are (no longer) anxiety filled occasions that everyone braces for. It means we get to sit and enjoy time together without everyone looking (while pretending not to) to see what/if he’s eating. It means he can delight in making food (his current love is baking!), without his enjoyment tarnished by an implicit expectation he taste what he’s made. His food button isn’t the only thing that has helped up get to this place. Letting go of our own attachment to him eating with his mouth was (is) a huge shift.

Our attachment comes from us: our hopes & dreams, our cultural & family expectations and our ideas of what was “normal” & “healthy”, and our ideas for his future. It comes from our love, protection, confusion, determination and anxiety. And make no mistake… it comes from all around us also. When was the last time you saw eating through a feeding tube portrayed as “natural”. One of the first questions at every doctors appointment, regardless of the doctor’s specialty, is “is he eating by mouth yet?”

But in the end it wasn’t helpful. We needed to let his eating through a tube, maybe forever, be okay. Not just okay, but the natural and “normal” way he is meant to eat. Only through this shift can we truly meet him where he’s at, and support him in the way he needs. For me, this doesn’t equate to “giving up hope”. Not in the least. For me, this means meeting my child in who he is, as he is, in this very moment. And the next. And the next. Surrendering to, and having faith in, who he is meant to be shining through without my needing to control the process. And for an anxiety-prone Mama like me… that’s no easy task.

Cheers, Shelley

Feeding Tube Awareness Week 2022 – Tuesday: Nutrition

Tuesday, February 8th
There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Henry’s food button keeps him alive. It’s as simple as that. When he was younger I used to question myself constantly… should we have gotten his tube? Would he have eaten on his own eventually? Did we make it so he doesn’t eat? These questions and more would loop through my mind on a continuous feed, sometimes in the front of my mind, other times as a lurking niggle hiding in the background. But always there.

Now it’s easy for me to say – no food button = no Henry. I’m not meaning to sound dramatic (although I question writing it as it sounds dramatic to me). For me, it’s one of those “simple… not easy” statements. A few decades ago, when feeding tubes weren’t so common, and certainly weren’t common outside of a hospital setting, our lives would have looked very different.

It goes without saying we are thankful for his feeding tube.  If you didn’t know us and you saw the kids playing at the park… other than perhaps noticing that he looks a little different running, you probably wouldn’t take a second look. His food button is a big part of what enables him to grow and thrive.

I won’t lie – I have moments where I feel completely overwhelmed.  Those moments are fewer and farther between than they used to be. And now there more likely to be about his tween-ness, than his feeding tube.

For Henry we (read “I”) chose to do a homemade blenderized diet.  When we first started all this I hated feeding him formula from a can.  It either looked like a chocolate milk shake or powdered sugar, depending on the brand. It didn’t seem like “real” food to me.  That’s a judgement, I know that, and it speaks more to my feelings of inadequacy than to the nutritional content of commercial tube feeding formulas.  I couldn’t even feed my own baby… and that really triggered me.  I made it mean there was something wrong with me; I clearly wasn’t good enough; and there would never be enough I could do to make up for it. These thoughts still live inside me, and thanks to the help of brilliant therapists, I’m better noticing and reality checking them when they take up too much space.

We continued with homemade blended meals because it turned out that Henry has several food sensitivities that made typical commercial formulas not work for him.  It was a game changer when we started blending his meals.  It was almost 11 years ago and I still remember the difference clearly.  He went from meals that took at least 45 minutes, frequent vomiting and us walking on eggshells, to thriving, eating more and feeling better.  We no longer struggle so much with the “what” and “how much” of his meals. Sometimes he eats too much and gets a tummy ache, but gone are (most) of my anxieties around him not eating enough. “The Homemade Blended Formula Handbook” by Marsha Dunn Klein, was a HUGE resource, and continues to be my number one recommendation for people wanting help getting started.

Trusting and consent around his body are big ideas we are working with currently. Years of holding him down, against his will, “for his own good”, listening to him scream as we changed his food button or other such intervention, has left a lasting impact on his trust and feelings of body autonomy. Now we talk. And talk. And talk some more. Now it may take 8 months to change his food button that’s meant to be changed every 3 months. But it’s his call. It’s his determination, stubbornness, tenacity and will that decides when and how things get done. It’s not easy… for any of us. It’s a radical shift in how things used to be, and it pushes us all to our perceived limits at times. And it works, because we all grow a little more each time we navigate it together.

What I do know is that thanks to his feeding tube Henry eats WAY more nutritionally balanced meals than my other son (9 years old… processed meat & raw veggies please!).  Henry’s meals provide the nutrition he needs to thrive… and that’s all this mama can ask for!

Feeding Tube Awareness Week 2022 – Monday: Awareness

It’s that time of year again… Feeding Tube Awareness Week! Each year during this week, I share our story to raise awareness about feeding tubes and how they have changed our lives. It’s also a beautiful time for me to reflect back on where we’ve been. We have changed a lot over the year – as a family and as individuals. But what hasn’t changed is our gratitude for, and reliance on, this life saving piece of medical technology that allows our son to eat, grow and thrive!

Henry, age 1

Henry, age 11

Awareness
Monday, February 7th
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.

Henry was born with a congenital myopathy – a muscle condition – that results in low tone, or weaker muscles.  Despite years of testing, his condition remains undiagnosed.  We know a lot about what he does not have, but we do not know exactly what his condition is.  What we do know is that it is appears to be a genetic condition, but its origin is not in one of the “common” genetic sequences.  Having said that, we are told there are thousands of obscure genetic conditions.  In the last couple years we thought we were narrowing in on a diagnosis – the genetic sequencing showed a specific “blip” that seemed promising. However a muscle biopsy was “non specific”, so we’re back to where we started. It may be we never know the exact cause, however new information is being discovered all the time, so we never know.

Because Henry’s condition is undiagnosed, it also means there was no “road map” to follow – no other cases to glean information from about what to expect.  As with all things, there are pros and cons to this – no precedents meant no idea what to expect.  But it also meant no preconceived ideas of what he might, or might not, be able to accomplish.  So as far as we’re concerned… the sky’s the limit :).

When Henry was born, he was a very quiet little guy.  He did not move, did not cry, did not fuss.  He couldn’t – his muscles were too weak to.  Seeing him now, he’s an active, outgoing boy.  His muscles are still weaker than his peers (and they likely will always be), but with some accommodations he can participate in and enjoy most of the same activities as his classmates.

Henry continues to eat exclusively through his food button (a mic-key brand, low profile gastronomy tube).  Because we make his food ourselves, he may very well be one of the best-fed almost 12 year old boys we know…

…broccoli, asparagus, kale, carrots and broiled chicken for breakfast anyone…?!?

That’s not to say he doesn’t eat chicken nuggets, and chocolate cake from time to time as well.  We used to follow a well planned, documented, calculated food guide when making his food. His doctors and my anxiety required the certainty of accurately measured nutrient counts. Now he gets a little of this and a little of that, with a few left overs thrown in :). It’s not as haphazard as it may seem (I can feel my anxiety rising even typing this!). It’s more than I’ve been making his food for so long now that I think I could do it in my sleep. I can rough measure proteins, fruits & veggies, carbs, dairy substitutes, fats, supplements, etc while making the rest of our dinner, and somehow it turns out okay every time.  

He continues to taste foods by mouth, the current favourites being chocolate or mint chocolate ice cream.  He eats very little by mouth these days, and we are less and less concerned by this. I think one of the best things we did was stop his occupational and feeding therapy several years ago. He got to just be a kid, and we all got to relax a bit.

While his “swallow” muscles have strengthened over the years, it is physically impossible for him to bite, chew and swallow a sandwich, for example.  His swallow is not strong enough to clear his mouth and push the food all the way down to his stomach.  The resulting “pooling” that remains in the upper throat area puts him at risk of aspiration (breathing in food/liquid).  However as he has had dozens of chest x-rays over the years and has shown no signs of aspiration, he has the go ahead to continue exploring foods by mouth, in a way that makes sense for him. When or if he shows interest in restarting, then we’ll discuss it as a family. Until then, he’s old enough that we follow his lead. It’s now him who’s in the lead, with us and his doctors in the supporting roles.

Henry received his first feeding tube at 2 month of age – a nasal-gastronomy tube (or ng tube).  This type does not request surgery, but is highly invasive in that it goes through the nose, down the back of the throat and into the stomach.  Just after his 1st birthday, Henry had surgery to receive his g-tube.  Almost 12 years later he still has his food button and we are so happy he’s getting the nutrition he needs to be a happy, healthy tween!

Cheers, Shelley

Feeding Tube Awareness Week 2020 – Wednesday’s Topic: Benefits

What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.

 

This one’s easy… the biggest benefit of tube feeding is Henry’s alive.  Without his tube I’m not sure he would be.  He’s had several feeding studies over the years, all of which show his swallow is not strong enough to clear his airway.  He can eat some foods, which I think has made it more challenging at times, as there’s no clear “he can’t eat”.  And it’s in this grey area that people (ourselves included) are left wondering… could he eat more? Should we be “pushing” more”.

After repeated spells of soul searching, we always return to a place of honouring his body and his knowledge of what feels right and safe to him.  As he gets older, he is becoming an active partner in the conversation and we grapple with respecting his boundaries when so much of his life has been us forcing thing onto/into him in the name of “good health”.   Consent is huge for us now – when tube feeding is by it’s very nature more invasive than eating with your mouth.  In our day to day lives this has meant taking 3 months to change his g-tube last time, as he has a visceral fear of the process and we are committed to no longer holding him down with force.  It means really honouring his “no” to meals, even when my ingrained fear of returning to the ER takes over.

And throughout all this, the benefit of Henry’s tube is that all this even gets to take place.  And for that, I am eternally grateful.

xoxo, Shelley

 

Feeding Tube Awareness Week 2020 – Monday’s Topic: Awareness

Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding

.

“I was born with my muscles being a little bit weaker, so I can’t swallow foods.  I can swallow foods like ice cream, hummus, guacamole and tiny crumbs of brownie or other soft foods.  I probably eat the most vegetables out of a kid my age.  I can have conversations at the dinner table easier because I don’t have to worry about talking with my mouth full”. ~ Henry

Owen says… “Henry can’t do some stuff me and you can do. He can’t climb up a climbing wall really fast.  He can’t do a burst of speed or run really fast.  But he doesn’t have to taste yucky medicine, so that’s good for him.”

Henry was born with a congenital myopathy that results in low tone (weaker muscles).  He was diagnosis last summer (at age 9 1/2) with a genetic condition called RYR1, and a likely diagnosis of central core disease.  I say likely because clinically he presents with all the signs of this condition, however his muscle biopsy at age 1 did not show signs of this disease.  However that may have been due to his young age or the muscle they biopsied.  As a result, I had a biopsy done in Sept 2019 and we are awaiting the results (I was also diagnosed with the same condition and it’s less invasive to do a biopsy on me than Henry). From my beginning understanding of the disease, Central Core Disease can present with a wide range of severity, from “you can barely tell” to significantly reduced physical ability.  That’s how Henry and I can have the same condition but present very differently in day-to-day life.

Feeding Tube Awareness Week 2019 – Thursday’s Topic: Support

Today’s Topic: It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

When I read my post from last year, I decided I only wanted to change a word or two.  So here’s an (almost) encore from 2018’s post about support.  

 

Whether it be a kind word, a hug, an offer to help or a smile… having your support means so much to us. When Henry was little, it was actions – help by picking up groceries, make dinner, ensure Shawn and I were eating and sleeping so we could take care of Henry.  Listen as I cried.  There was nothing anyone else could “do” to help Henry.  There was nothing anyone else could “say” to help Henry.  But they could help ensure we were taking care of ourselves.

It was the seemingly little things that matters so much.  I still remember the first playgroup we went to through the Infant Development Program – the lady there seemed like an angel.  For the first time in months we felt like we weren’t alone.  There were other families who could relate, there were people to help.  Yes… there was still something “wrong” with Henry, but suddenly our bubble got a little bigger and we weren’t so alone.

I still remember going to the first parent meeting at preschool; so scared because we had to introduce our children.  I was so scared to talk about Henry’s feeding tube.  Scared what other parents would think.  I was sweaty, clammy and could barely talk.  And it was fine.  People were fine.  I just about cried.

Fast forward almost 9 years and other people’s support still matters so much.  More than most people realize.  It’s the understanding that this is hard.  Nine years later and it’s still hard.

His tube still plugs… I still spray food all over the walls… I still go to Science World and forget his tubes so we have to get back on the Skytrain and go home… I still serve dinner and hope deep down that he’ll try some hummus tonight… that today will be the day he decides to start eating.  I still cross my fingers behind my back and say a little prayer every time he gets weighed at the doctors, hoping he’s gained 1/2 pound.

And I’m still scared.  Scared kids are going to laugh at him.  Scared someone’s going to say “that’s gross”.  Scared he’s going to be picked on.  Scared well meaning (or not so well meaning) adults are going to be rude.  And I want to bundle him up, go back inside our bubble, and keep him safe.  Yes, I know this isn’t practical.  Or realistic. Or even possible.  Yes, I know I need to support him to stand on his own to feet and have faith in the world.

 

So…

– When my Mom comes into town and feeds both the boys dinner… it matters.

– When people serve ice cream with whipping cream on top, so Henry feels he can participate in the meal… it matters.

– when Henry “serves” people appetizers (when they want them or not!), and people recognize this is him participating in the meal… it matters.

– when a stranger at the next table is curiously kind, and stares but not rudely… it matters.

It all matters.  The kind and the not-so-kind.  It shapes who we are as people, all of us.

I love that we have so many people around us who care.  I love that when we need help, there always seems to be someone available.  I love that when I cry, my friends cry to, and then they make me laugh.  I love that, even though our experience may be different than some, we are not alone.

Cheers, Shelley

 

Feeding Tube Awareness Week: 2019 – Wednesday’s Topic: Benefits

Today’s Topic: What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.  

For this post I had the pleasure of interviewing Henry.  

Mama: What are things that you like about your food button?

Henry:  Well uh… it means I can eat stuff that doesn’t taste good without tasting it.  I don’t need to worry about mom saying “eat your vegetables” because I’m just eating them.  

Mama: What are things that you don’t like about your food button?

Henry: There’s some foods that I wanna eat but I cannot taste, like cookies.  I don’t want to lick them because I’m worried about getting a big crumb.  It’s happened to me with big chunks in smoothies.  Sometimes when people offer me food I can’t eat it right away.  Sometimes I bring the food home and put it in my blender.