My favourite 10 items for raising a tube fed child
There are so many things involved when your child is tube fed (as if raising children wasn’t hard enough). There are syringes, feed bags, pumps to operate, rates to calculate, dosages to draw up, and of course a lot of mess. It is a lot of hard work, and you can pretty much earn your degree in medicine from the amount of hours you will put in to feeding your child. But from one parent of a tube fed child to another, these are my top items every tube fed child needs (apart from all their actual feeding supplies). These aren’t in any particular order, but I hope these tube feeding tips will make your life a little easier.
This post contains affiliate links, and my opinions are genuine.
1. Snap Down Pyjamas
There isn’t anything much better than to be able to access your child’s feeding tube in a snap! (pun intended) Snap down pyjamas take the hassle out of having to undress/redress your child for each tube feeding, and making sure the tubes come out the bottom during night feeds. Zippered pyjama’s just don’t allow for easy access, and must be modified by adding some sort of hole for the tube to come out or else it’s coming out up by their neck. Skip the hassle and stick with snaps!
2. Onesies with access to the g-tube button
If you are having to access your babies feeding tube button more than once a day, you’ll need them in an easily accessible clothing. I love the onesies that button down the front, like the one Maddison is wearing in the photo below. My daughter wears one under her clothes everyday! Like I said in my comment about snap down pyjamas, the snaps down the front make accessing the feeding tube a breeze. We found these button-down onesies at Babies R Us! You can also check out StarberryKids, or Tubesies for their adaptive clothing onesies with feeding tube openings. There is also Tummy Tunnels, who offer an iron on patch so that you can make any clothing adaptive.
3. Zip down Halo Sleep Sacks
Halo knew what they were doing when they created their zip down sleep sack. The zip down is handy when your baby is having a night feed – the tubing comes out the bottom and not the top! Maddison loved being swaddled.
4. G-tube pads
The first thing that I purchased for Maddison’s g-tube was some g-tube pads from Fashion Tubies on Etsy. Maddison had developed some granulation tissue a couple weeks after her g-tube surgery. Her stoma would leak sticky goo and cause issues on her skin. It was awful. I wondered how to keep her g-tube site clean. G-tube pads were the answer!
Having a g-tube pad around her MIC-KEY protected her skin from any stomach acid that would be leaking out, and it healed her granulation with no medication (which isn’t always the case). These are the softest I have ever felt, and have amazing absorbency. Depending on her discharge we will change her pad as little as twice a day, but it’s worth it to keep her skin clean – plus they are cute!
5. Command Hooks by 3M
Things are always changing in our house – especially where Maddison is being fed. Being able to attach these hooks anywhere your child is feeds, and being able to move it without damaging the walls is a A+ in my books. You can pick up the hooks at any grocery super centre or hardware store.
6. Carabiner Clips
Having a carabiner handy where there isn’t a hook can be a life saver. We have this large carabiner clip attached to our stroller. Not only is it good for holding groceries, it’s great for holding the feeding pump backpack! We also have a small carabiner on her backpack that we can hook up anywhere we go.
The backpack we use is the one our pump came with from MOOG, but there are some cute ones in the Etsy world.
We have always wanted Maddison to have an association to taste in her mouth when she is being fed. Our doctor encouraged dipping a soother in some formula or breastmilk before a tube feed to help connect flavour with the feeling of being full. I believe that having a soother helped Maddison feel comfortable with having things in her mouth, and we have been very fortunate to avoid oral aversion so far.
Oral stimulation is key, and even though a tube fed child may never eat anything orally, dental hygiene is still very important. So a toothbrush is something a tube fed child needs. We brush Maddison’s teeth twice times a day to keep her pearly whites fresh and clean.
9. Homemade Blended Formula Handbook
Even if you don’t plan on serving homemade blended diet for your tubie, this book is loaded with amazing information on how to include your tube fed child at dinner time, understanding your child’s feeding cues, facts about nutrition and so much more! I cannot stress enough how much this booked shaped me as a tube fed mother. So I would highly recommend the Homemade Blended Formula Handbook
10. Munchkin bottle drying rack for syringes
There is always a lot of enteral syringes that need to be washed daily with tube fed children. We have fallen in love with our fuchsia Munchkin bottle rack when washing our tube feeding supplies. It holds all sizes of syringes, even the 1 cc by placing it tip down in the straw holder. It also folds up for easy storage – but let’s be honest, I’m cleaning syringes 24/7, so this rack never gets a break. Grab one for yourself here, or at your local Walmart or Toys R Us.
- Waterproof padding or liner for the bed – leaks and spills are bound to happen. Forgot to close the medicine port – done it. Forgot to actually hook up the feed to the extension – yep, me too. It’s better to soak the sheets than the mattress, so protect it anyway you can.
- NoseFrida (The Snotsucker) – If you don’t have a hospital grade suction machine, I’ll tell you that none of the battery machines work well enough, but this will be your best friend, there is nothing compared to this!
- Small bag with back up/emergency feeding supplies to take in your diaper bag (I’ll expand on this in a future post).
- Large binder for medical information (I’ll expand on this in a future post).
Our Maddison has been tube fed for over a year, and all of these things really have made a difference and help make things a little easier. If you want to know more about Maddison take a scroll through our blog, or check out her medical bio. I hope our experiences and help you on your tube feeding journey – and if you think I forgot to mention something, leave a comment below and share!
9 thoughts on “Top 10 Items Every Tube Fed Child Needs”
I wish there was some kind of tripod or weighted pack, that stands alone. I’m the ONLY person who ensures that there is no air ion the bag. It’s crazy. I can’t trust anyone to manage to do this properly. The backpacks are so floppy, and the straps hanging off of them and all of the pockets hanging open. Like we don’t have enough strings attached, My son is on 20 hour feeds! He can’t do half the physio stuff without me filling behind him holding this mess. He’s on a j tube and keto diet, if it pulls out, we are en route to a major hospital to have a procedure done, because he’s already starving. How about retractable cords? Compact carriers that actually fit on a toddler. NO STORAGE! SAFE MOBILITY . Is that too much to ask? That was a rant. Sorry, I’ve been searching for something I’m not even sure exists.
I live in the Netherlands, and when my son got his NG-tube (which has now been replaced by a G-Tube) we received a backpack from the same organization where we get our tube feeding from. It is really a sturdy backpack, specialy designed for kids who depand on tube-feeding. I can send you a picture of it if you like, if this is the kind of backpack you are searching for, than maybe we can arrange a way to get one for you. Let me know!
It certainly is tricky when your child requires a different kind of product than what’s currently available on the market. My Mom always says, “necessity is the mother of invention”, meaning when you need something – invent a way! I know there are a couple products on the market (usually Etsy) that have some tube feeding adaptive products – it just comes down to finding what will fit your lifestyle and your child. Good luck on the pursuit of the perfect products for your family, and well wishes from us 🙂
My daughter Molly has a g tube as well. We have many of these items, but some of these were new to me. Love all of your thoughts and ideas. Thank you for sharing.
Molly went through almost a year of feeding therapy and is eating by mouth now, she is two, I hope your sweet baby also has great luck and success with eating eventually too.
That’s so amazing that Molly is able to eat by mouth now – what an accomplishment! I have hopes that one day Maddison will as well, but its her gut we’re waiting on now. Once she can keep things in her stomach then hopefully we have move forward to more oral feedings.
Cheers, Kelsey Ohs
My son is 3.5 yrs old tube fed since he was 2 mos old. NG, G, GJ, now back to G whew :p. Anyways good ideas i would add KT tape. When he is on a vent bag 2 tubes get tangled so i would tape them every 10 inches or so. Sticky goo left behind drove me nuts kt tape didnt do this. Also when he had the GJ id tape the 2 extentions together same method no goo 🙂
Oh good one! My husband uses a lot of KT tape for his back, but I’ve never thought to use it for Maddison. Thanks for the suggestion! We definitely don’t like sticky goo!
Just came across you blog and it’s great! Just have a question about one of the pictures (7th down or 3rd up) is her infinity orange clamped to the car seat handle with the iv pole clamp? If so that’s super creative and awesome! A little easier than the backpack if she’s staying in the car seat. I watch a little one with SMA about Maddison’s age who uses the infinity blue and I can totally relate to most of these necessities. Looking forward to reading more posts! I see a lot of things that I recognize! Hip dysplaysia being one (2 years ago I babysat my infant neighbor she had hip dysplasia and ended up having surgery to correct and a spica cast for a while then rhino brace)…
Hey Cassidy! Yes, that brilliant clamp attachment has been a great help! Thanks for checking out the blog – it’s so great that we can share our experiences here.