feeding tube

  • Doing things differently

    Feeding tube 101

    What do you think of when I say “feeding tube”?

    I can tell you what I thought when I first heard JB’s gastrointestinal (GI) doctor say he’d need a feeding tube:

    • I remembered one time when I was maybe 12 and I couldn’t eat because I was too anxious about something happening at school later that day. Someone told me, “You know what happens when people don’t eat? They get a tube up their nose and have to get their food that way. You don’t want that, do you?”
    • I pictured the images I had seen in the media of comatose people in hospitals, hooked up to tubes and beeping monitors. (The Terri Schiavo case was all over the headlines when I was in high school.)
    • I thought of the scene from Season 2 of Arrested Development when Buster Bluth says he’d be happy just being fed soup through a tube for the rest of his life. (My mind usually turns to at least one sitcom quote, even in crisis mode.)

    I believe this is what actually came out of my mouth when JB’s doctor mentioned feeding tubes: “He’s going to be hooked up to a machine forever?! He won’t be able to go to school or have friends or be a kid!”

    Thankfully, the GI doctor was a mother with young boys about JB’s age. She “got it” from a mom’s point of view, and for that I’ll be forever grateful. She had a nurse come in and together they explained how common feeding tubes actually are. “Tubies” – or people that use feeding tubes –  live fulfilling lives going to school, playing sports, making friends, having careers, and raising families. It is just a different way of eating, not a life sentence.

    The nurse and doctor then showed me a feeding tube button like the one JB would have. I’m going to attempt to explain it the best way I know how, but I urge you to learn more here to see for yourself. The G-tube button looks like a combination of a post earring and the air vent you use to blow up an inflatable beach ball. The button is surgically inserted into the stomach – basically like piercing an ear, but in his stomach, and a wider “post”. It stays in thanks to the “backing” – a plastic bubble you inflate with a few milliliters of water. If the button comes out, you simply reinsert it and reinflate the bubble. If the button comes out and isn’t reinserted within an hour or two, the “piercing” closes up.

    There are several kinds of feeding tubes, and each is named according to where it enters the body and/or delivers food. JB originally had a G-tube. (G is for Gastric, as it goes directly to the stomach.) He has had an NG tube (Nasal Gastric, as it enters the nose and goes down to the stomach) before during hospital stays, as those are usually temporary, and don’t require surgery to place them. He now has a GJ tube (Gastro Jejunal, as it has a port into the stomach and a port into the “jejunum” part of the small intestine.) Here is an excellent explanation where you can see examples of these feeding tubes and other kinds. No matter what the tube button, you use an extension tube to insert the food into the body, whether by syringe, gravity or pump. Here are some of the most common feeding methods through the extension.

    So what goes into these tubes? Well, it depends on each person’s nutritional needs and lifestyle. Breastmilk, traditional infant formula, specialized formula for all ages, or blended and pureed foods are all options for tube-fed diets. Often times medicine and water are also given through the feeding tube.

    I encourage everyone to take some time this week – Feeding Tube Awareness Week – to learn a bit more about feeding tubes. There are so many awesome resources out there to de-stigmatize them.

    Finally, if you learn nothing else from this article, please remember this: Never, ever base medical knowledge on Tony Hale characters. No offense, but Buster and Forky are not licensed medical professionals.

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  • Doing things differently, JB&A recommends, Real talk

    Demystifying disabilities

    (Please note: This post was written before I knew about author/activist Emily Ladau’s incredible book Demystifying Disability. The similar post title is a complete coincidence. I highly recommend reading her book and following her on social media!)

    A few weeks ago, a college friend reached out to me on Facebook with the sweetest message. She wanted to know if I had any recommendations for how she and her young children should best engage with kids with disabilities in a way that is respectful and supportive.

    First of all, I’d just like to thank this friend, and others who have asked me similar questions. Seriously, though, the fact that parents want their children to know about and celebrate differences is absolutely reassuring to me, as I prepare to send JB off to preschool next month. It gives me hope that kids are becoming more accepting of and comfortable with people not exactly like them.

    As for what to say when meeting someone with a disability, (child or adult), I’m quickly learning everyone is different at what they appreciate or don’t appreciate. But so far, I’ve been amazed by how well my friends and their kids have come to accept and embrace JB!

    It’s funny, but there are two different – and totally appropriate – reactions kids typically have to learning about JB, whether it’s his wheelchair, his feeding tube, his hand and head movements, or his lack of talking:

    1. The kid shrugs and says “Oh,” and moves on to another topic or walks away.
    2. The kid says, “Oh,” and then asks an amazing follow-up question like “Does he drink Magic Formula like Boss Baby?” (In case you were wondering this same question: Yes, JB gets formula, and I guess it’s kind of magic in the fact that it gives him all of his nutrition. No, he doesn’t drink it. And no, fortunately JB – unlike Boss Baby – doesn’t sound like Alec Baldwin!)

    I find my friends and I have the best luck explaining it in the terms of showing what’s different between the children but what also is the same. So if the child asks why JB doesn’t walk, we answer, “His legs aren’t strong enough yet to walk like you do, but he has this cool chair that helps him get around. Isn’t it cool how many ways there are to move and explore?”

    Or if they point to JB’s feeding tube, we’ll say, “That’s how he gets his food in his belly. It’s like how you’re eating your sandwich by mouth and it goes into your stomach. Isn’t it amazing how many ways there are to eat?”

    This way they see what’s different but also what they have in common.

    The main thing is to explain there’s nothing to be afraid of – kids with disabilities are still just that – KIDS. They enjoy dinosaurs, Disney movies, hockey, stickers, iPads and other things just like other children.

    I promised my friend I’d compile a list of some of my favorite children’s picture books that explain disabilities in easy, approachable language. I also thought I’d share this list on the blog, as it is holiday shopping season and people are looking for great gift ideas. Enjoy!

    1. Daniel’s New Friend by Becky Friedman: This story recaps the Daniel Tiger’s Neighborhood episode of the same name. It introduces Chrissie, a new character who uses leg braces and crutches. I love this book and TV episode because they show Daniel and his friends showing curiosity in their friend’s equipment, then moving on to get back to playing. They don’t completely ignore the difference, but rather it’s acknowledged, and then accepted. (Side note: This story is also included in the collection Daniel Tiger’s 5 Minute Stories.)
    2. Just Ask! by Sonia Sotomayor: “Why would a Supreme Court Justice write about kids with disabilities?” I know that was my first thought when I heard about this book. It turns out that Justice Sotomayor had diabetes starting at a young age, but her classmates never asked her questions about it. She wanted children to know that curiosity and questions are good, and that disabilities and chronic health issues can be respected and talked about. There are a variety of disabilities and differences mentioned in this book, such as asthma, blindness, deafness, autism, food allergies and dyslexia. Also, the illustrations are incredibly beautiful.
    3. We’re All Wonders by R.J. Palacio: This book is a spinoff of the New York Times Bestseller Wonder. It follows Auggie, a young boy with facial differences, and his dog, Daisy, as they go on adventures. The message of the entire Wonder collection is to “Choose Kind”, and frankly we could all use that reminder. If you want to hear a sample of We’re All Wonders, check out this video of Luis from Sesame Street reading it aloud.
    4. We’re Different, We’re the Same and We’re Wonderful by Bobbi Jane Kates: This Sesame Street book first published in 1992 discusses differences of all kinds, without ever using words like nationality, race, gender, religion or disability. Are the illustrations a little dated and cheesy? Yup, but that’s part of its charm!

    I’d love to hear your favorite books for helping explain differences – whether disabilities, gender, religion, race, etc. – to children. Feel free to share your recommendations!

    Please note: These opinions are all entirely my own, and I have not been compensated to review any of these books. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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  • Doing things differently, JB&A recommends

    Have JB, will travel: On the road this holiday weekend

    “Twenty bazillion travelers are expected to hit the roads this Thanksgiving weekend, according to the latest report from ZZZ…”

    Back in the day, (the “day” being my 20s), a big part of my job was writing/editing/distributing press releases that started just like this!

    While I no longer work for “ZZZ” (clever pseudonym, I know), I still feel a sense of nostalgia for pre-kid road trips. Back then, our biggest concern was giving the dog his anti-nausea meds before he got in the car.

    Today’s packing list looks a bit different:

    • IV pole for the feeding tube pump? Check.
    • Enough cans of formula for the entire length of the trip, plus extra? Check.
    • Medicines, syringes, bottled water and feeding bags? Check, check, check and check.
    • The actual kid? Check.

    I’m fortunate that most of our family live close by. When we do travel, though, there are several items that are CRUCIAL for making the trip with JB easier. Here are several indispensable products we swear by for traveling with our special needs toddler. Even if you don’t have a child with a feeding tube or wheelchair, I bet they’d be helpful for your little ones, too.

    • Skip Hop insulated bottle bags: I have an unspoken rule that if I see one of these bags on sale, I buy it. No matter what. I LOVE these mini coolers. While meant to keep bottles chilled (with the enclosed ice pack), we use them to store JB’s feeding pump and bag during the day. These bags have a great buckle handle, making it easy to attach to a stroller, car seat, high chair, etc.
    • Skip Hop stroller organizer (no longer available, but see similar model here) : Most strollers come with at least one cupholder for the grownups. Unfortunately, those cupholders are usually plastic and appropriately have giant “No hot beverages!” warnings. Enter this bag. It works with any stroller – including JB’s wheelchair stroller – and includes an insulated cupholder just screaming for me to finally put my latte safely down and free up my hand. Fact: I’m a much better mommy when I have my coffee with me.
    • Columbia diaper bag backpack: This backpack has been with us since we went to the hospital to have Baby JB. Since then, it’s withstood almost three years of JB, including daycare, playgroup, road trips, amusement parks, nature walks, playgrounds, the beach, and more. It’s fantastic: Super durable, tons of storage, and ultra comfortable. The only downside? Several of our friends have the same one because we all keep recommending it to one another!
    • Bright Starts Beaming Buggie: Behold, the little firefly that has made every overnight trip and hospital stay a whole light brighter. This toy seems simple: a cute little plastic bug that plays music and lights up. But it also has a waves/white noise option, which we use to help JB feel more at home wherever we are. It clips on to the pack-and-play or crib with ease, and is much easier to pack than a traditional white noise or music machine.
    • Wildkin nap mat: Consider this a “starter sleeping bag”. JB loves this all-in-one mat, blanket and pillow. It’s easy to roll up and bring when visiting family and friends, and it gives JB a familiar setting for his nap. Apparently it’s pretty comfy, too, considering we have photos of my dad napping next to it at a family function!
    • Blender Bottles: This one goes out to my fellow formula-feeding moms out there. These are the perfect way to mix a day’s worth of formula with minimal dishes to wash! Great for travel or everyday.
    • Car headrest hooks: Someone in a “tubie parent” Facebook group recommended these simple hooks. They are so simple, but so useful! We hang JB’s feeding tube pump bag (see: Skip Hop Bottle Bag above!) from these during car rides. You can also use them to hang car trash bags, headphones, purses, shopping bags, and probably 100 other things I can’t think of right now.

    So far, we’ve only traveled domestically by car on our trips with JB. Air travel and international travel are completely different ball games, from what I’ve read and seen. We’re not that brave yet, but I am hopeful that over the next few years travel will become more accessible to disabled travelers and their caregivers.

    What are your road trip must-haves? I’d love to hear!

    Note: This photo is of our dog, not JB. It obviously was taken while the car was safely parked. We would never allow our dog to stick his head out the window while the car was moving. We also would never leave our dog in a parked car unattended. 

    These opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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  • Doing things differently, JB&A recommends

    Favorite feeding therapy finds

    Yes, I know this post’s title is somewhat of a tongue twister. That’s intentional, because a huge part of feeding therapy is working that tongue!

    In today’s post, I’m focusing on JB’s feeding therapy: How he learns to eat, what gear he uses and the incredible progress he’s made. (Please note: this is about our unique experience – every child’s case is different, and one approach isn’t necessarily better or worse than another. Also, I am not even remotely a medical professional, despite watching Grey’s Anatomy until McDreamy died.)

    It turns out that people with JB’s genetic syndrome have an 80 percent chance of experiencing feeding issues, usually requiring a feeding tube at some point to provide calories and nutrition. Doctors believe it’s related to the hypotonia – as everything from chewing to swallowing to digesting requires muscles.

    While JB still receives almost all of his nutrition and hydration through his feeding tube, he’s working on increasing how much he can eat and drink by mouth. As he improves, the hope is that he’ll consume more orally and less by tube.

    JB sees a feeding therapist weekly. She is a speech language pathologist (SLP) who specializes in swallowing disorders. In each session, JB, his therapist and I work on a variety of aspects of eating and drinking:

    • Sensory experience: Feeling, smelling, tasting and playing with the food;
    • Hand-eye coordination and fine motor skills: Bringing the spoon to his mouth, picking up little pieces of food, drinking out of a cup;
    • Chewing and swallowing: Taking small enough bites/sips that he can chew and swallow without gagging or vomiting, strengthening his jaw muscles, moving food with his tongue, closing his lips around a spoon rather than scraping food off the spoon with his front teeth.

    People often ask me how someone learns to eat. Well, it takes a lot of time, though JB is making great strides, especially as he continues to gain strength in his head, neck and torso. Since starting with his feeding therapist last summer, he’s gone from occasionally having a teaspoon or two of pureed baby food to eating almost an entire jar of baby food, a dozen yogurt melts, 2 ounces of water, or even an entire cookie! Here is a list of some of some products that have helped on this journey.

    • ezpz cups and spoons: JB’s feeding therapist recommended the ezpz tiny cup when we started re-introducing him to sipping water. The cup is weighted and textured on the bottom, for increased stability. And the top is flexible, so we can direct the water into his mouth more easily. The ezpz tiny spoons are designed to help encourage lip closure (and they are adorable). The best part about ezpz’s products is that every item is tested and approved by special needs therapists – including feeding therapists – to ensure children of all abilities can benefit from the products. (Note: the green cup and red spoon in the photo are ezpz products.)
    • Ark Therapeutic Z-vibe kit: The Z-vibe is a vibrating sensory tool similar to an electric toothbrush. It’s the width of a pencil with different attachments for working the tongue, teeth, jaw and lips. JB uses it mainly to self soothe himself when he’s in sensory overload – he chews on one of the textured tips and instantly calms. He also sometimes uses the spoon attachments in feeding therapy.
    • Ark Therapeutic Grabbers: Yup, there’s a repeat brand on this list, because Ark Therapeutic is just that awesome! If you’ve ever wondered what the “P”-shaped teethers JB is chomping away on in photos, they are these guys. They are made in the USA and come in a range of textures, colors and firmnesses to help build chewing and biting strength while also providing oral sensory input. I just ordered several more of these last night, as they are perfect for keeping in diaper bags, the car, his stroller, etc. Sometimes we even use these in feeding therapy to dip into food.
    • Colgate Kids Powered Toothbrush: One of the best tips we’ve ever received from JB’s OT (occupational therapist) was to get him an electric toothbrush. Because of his positive associations with the Z-vibe, he thinks brushing his teeth is fun, too. (It doesn’t hurt that we get ones with little characters and bright colors!) For many kids with developmental or sensory issues (and their parents), brushing teeth can be one of the worst experiences, so we are fortunate that for now, he doesn’t mind it.
    • OXO TOT Transitions open cup trainer: This was the cup that helped JB learn to drink water! JB still doesn’t have the strength to sip from a straw or work against the resistance in many children’s cups (after all, the resistance is what makes those cups “spill-proof”), but a completely open cup can be a mess. This cup has a plastic disc on top to hold some of the water back, while allowing water to still flow freely through the sides without any resistance. We have three of these cups and absolutely adore them!
    • Bumkins waterproof bibs: Feeding therapy is messy – very messy. Cute cotton or muslin bibs just don’t do it when it comes to the serious splash-zone conditions, but we’ve had only good luck with Bumkins waterproof bibs. The best part? I can satisfy my 80’s/90’s nostalgia with the characters and patterns! We have Superman, Nintendo and Lion King ones so far. (See the Simba one pictured above.)

    Do you have any questions about feeding therapy? Feel free to ask away in the comments, or on the Joyful, Brave & Awesome Facebook page.

    (As with all my posts, these opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are affiliate links in the above post. If you purchase from an affiliate, I may be compensated.)

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