Tubie Guide: The Must-Haves
Happy #FeedingTubeAwarenessWeek 2019! I have been celebrating, sharing our story, and spreading awareness for the past 3 years, which just seems crazy!! There are some days I totally forget she has a feeding tube, and other days in which it is just my nemesis. The alarming, when you “Fed the Bed”, taking the backpack on and off as you get in and out of the car while running errands, AHHH!!! It can be a lot. But I always say, having a feeding tube is life changing, life giving, and life altering.
I am Mama to a 3 year-old tubie named Adeline, who has been tube fed her entire life. She was born prematurely, had NEC, malrotation & volvulus, and has Short Bowel Syndrome. She’s had nearly every type of tube; OG, NG, NJ, G, and now GJ. Addie uses her feeding tube to receive 100% 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.
I am trying to make things easier for you over here, because I know you have a lot going on. Most of the tubies in our life are fighting through some tough medical stuff, which is always much harder than having the tube in it of itself. We’ve got some challenges, some bad days, some mountains to climb. I love learning about brands that are creating products for tubies, many of them inspired by a tubie in their life, and their mission is to make having a feeding tube be more comfortable. Whether that’s through the creation of adaptive clothing, backpacks designed to carry feeding bag and pump, a travel IV pole, a plate designed to decrease picky eating, etc. As a member of the tubie community, I love supporting brands that are doing good things for us, proud to work with them, and excited to share them with you. I’ve got some discounts for you, (just click any image to shop), and I am hosting a Giveaway all week long over on the gram featuring ALL the brands in my post below. You can enter the Giveaway here.
This is our new favorite place to get all things tubie related and I wish I had it in my life sooner. Abilitee was founded by a pediatric surgeon and an artist/designer. Dr. Julie Sanchez saw the frustration her patients and families felt when trying to dress comfortably and deal with various medical needs, so she and Marta Elena teamed up to create products that make people feel good and look good. They make tubie clothing for babies to adults, surgery recovery clothes, sensory + special needs clothing. We’ve tried about 50 different brands of tubie pads and our favorite is from here, and it’s because the material against the skin is soft, and cushioned.
As a pediatric surgeon, Dr. Julie Sanchez constantly hears from parents how hard it is to comfortably dress their children, especially when their child has a feeding tube or other unique medical needs. Abilitee Adaptive Wear was created as a solution to the this frustration. In an effort to expand her care for these families beyond the hospital, Julie decided to create a line of adaptive clothing and accessories directly inspired by her patients. Julie went to her friend, Elena, a pre-medical student with an eye for design. Together, Julie & Elena founded Abilitee Adaptive Wear.
Adeline is wearing an adaptive feeding back pack which holds her formula, feeding pump, and allows her to be independent while she is connected to her feeds. If you look closely, Adeline is wearing an adaptive shirt with the perfect discreet opening on the side of the shirt for her tubes to exit. When she does not have this type of adaptive shirt, her shirt or dress will be lifted up due to the tube. This type of shirt is cute, functional, and you would not know it’s “adaptive”. They want to help spread the message that no matter what your abilities are, #everyBODY has #theAbiliteeToBeKind with their Be Kind supporter t-shirt. We are in love! Finally Adeline is testing out their new tummy access bodysuit which will be launching the end of this month.
The original inspiration came after Dr. Julie Sanchez placed a feeding tube on a 4-year-old boy with autism and was speaking with his mother. The mother started crying as she realized the challenges of raising a special-needs child who also had a feeding tube. Julie and Elena wanted to address these common concerns, not only by creating products to help prevent infections but also empower anyone with unique medical needs.
Ever try to find a onesie for your little one once they get get a little bigger? It’s hard. Wonsie specializes in bodysuits for young children through to large adults. It’s designed to make everyday life bit easier and also prevent unwanted, challenging behavior. One of my favorites is the Tummy Access Wonsies which makes tube feeding easier by providing access to the stomach area.
These are good for people Autism, Sensory Processing Disorder, Asperger Syndrome, Down Syndrome, Cerebral Palsy, those in wheelchairs, Eczema and tube feeding.
I really like that they are longer in the leg than classic onesies which can prevent hands from reaching into diapers, keeping diapers hidden (for older children), and preventing uncomfortable 'wedgies'. Even though the bottom looks more like a short, it still has buttons at the crotch allowing easy access to diaper changing and toileting for older children who still need that. The Wonsies are tag free which stops any irritation which would normally come from annoying labels. It has a loose fit around neck, armholes and legs which will NOT dig into skin.
To celebrate Tube feeding awareness week, use the discount code SHEGOTGUTS2019 TO receive 10% off your order off the entire Wonsie range if you purchase 3 items.
The FreeArm takes the place of an IV pole!!! As a family that travels every 4-6 weeks for medical reasons, we know what it’s like to have a tubie on the move. She is fed in the car, plane, train, or stroller as we are walking around. When we travel, we either need to bring our IV pole with us or we need to MacGyver a way to hang her feeding pump. The problem with traveling with IV pole, is it’s huge!! We’ve clamped it on chairs, tied it to pack and play using tubing from her feeding bag, or just laid her feeding tube back pack in the crib with her which then just results in frequent alarming. It’s light, folds quite compactly, and it can brought wherever you go. It keeps the feeding bag upright, so you will not have to deal with alarming or kinks.
All parents need an extra hand, but medical parents need 8. For Adeline, giving her gravity bolus water was always complicated. I usually would hold her, and the tube, it was kind of tough to even keep my busy bee in front of me while holding the syringe. The FreeArm gives you an extra hand, and I know we will use this like crazy when Addie can start to tolerate bolus formula feeds. During our last medical trip to Boston, we used the FreeArm on the plane, on the stroller, in the exam room, and out and about around the city. Instead of me standing there just holding the syringe in the air while trying to manage the rest, the FreeArm held it for me.
The FreeArm is named after owner Misti & Will's son, Freeman Ellis Staley. Freeman was born in 2015 and after 3 long months in the NICU he was discharged with a feeding tube and needed to receive bolus gravity feeds. Being first time parents with a medically complex infant is incredibly overwhelming and feeding was difficult. He needed to be held, syringe needed to be manipulated, tube clamped and unclamped, medicines need to be added, and then you add that he would spit up and aspirate, there just were not enough hands to get the job done. . Five months later, Freeman lost his battle at almost 10 months old, the day after Valentine’s Day 2016.
After Freeman passed away at 10 months old they mentioned to a few friends that it would be nice to build a playground in Freeman's memory. They loved the idea and immediately started donating to make it happen. Freeman Playground Opening Day took place the weekend of Freeman's 2nd Birthday, Saturday, April 22, 2017. Freeman’s legacy lives on, since Misti & Will realized many parents of tubies were having the same difficulties they were. They dedicated themselves to revamping the FreeArm to not only make it easier to bolus feed, but also making it work for a pump and feedbag.
Kozie Clothes is committed to serving the unique need for stylish, fun,and therapeutic clothing and products for the Pediatric Special Needs community. They believe all kids should feel comfortable and happy every day. There are clothes and products designed for preemies, newborns, toddlers, and kids of all ages who require ongoing medical care. We’ve been using their products for the past two years and they are in our emergency hospital bag.
The bodysuit pictured above is designed for not only a kid who is tube fed, but also works well for Monitors, Leads, Ports, I-V's, etc. This bodysuit easily gives the option for the baby/child to be dressed while laying on their back and gives you access to everything since it has snaps at crotch, and down the entire front of the bodysuit. It has an overlaying belt/band across the belly which is a little extra support for kids who pull or try and grab their tube.
We also tried the patented pulse ox medical socks which will be a big part of our hospital emergency bag. Her feet can be warm yet the pulse ox can be worn. When Adeline had her central line or had surgery, we loved the medical onesie because of the buttons across the shoulders and down the middle. I love that all of the products were designed with the assistance of Pediatric Nurses, Special Needs Parents, and Sensory Therapists.
8 the Plate was created by a by a wife and husband team. Anesa Doyle is a Board Certified Behavior Analyst and husband, Joe Doyle, an aerospace engineer. It was created after Anesa was having difficulty with her own picky toddlers. 8 the Plate is a divided plate that spins inside a clear cover (= clear expectations), the plate only spins one direction so parents pick the order of the food, yet the child is able to spin the plate themselves with the over sized grip in the center.
The plate was designed to increase the variety of foods your child is eating and decrease picky eating using research based methods. It was also created to reduce the overwhelming feeling during mealtime by offering 1 bite of food at a time, vs. an entire platter of a variety of foods with many bites. By offering 1 bite at a time, it is more achievable. 8 the Plate is designed to promote balanced eating which is a struggle for many of us whose children just want chicken fingers, pizza, and goldfish. Finally, it was devised to help create engaged mealtimes, increase independence, let’s children manage their own meal, and allow you to make a game out of the plate.
I wrote an entire blog post about this plate, why I am obsessed, and check it out here.
Hopefully some of these items will help make your life easier. Let me know if there are any other brands you love, or items you’ve purchased from here, and how it went. I’d love to hear from you!