TUBIE GUIDE: THE MUST-HAVES
Febuary 5, 2019 - Medical
Read the original article here.
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.