Do You Have a Tube-Fed Child? Here Are 5 Types of Supplies You Need ASAP
Are you a brand-new "tubie" parent? If your child was just diagnosed with a condition that requires them to get their nourishment from a tube, you might've received a CVS receipt-style list of things to do and stuff to buy from the doctor.
Listen—a tube-feeding diagnosis can be an understandably jarring experience. But according to tubie parent-pro Michelle Martin from Vancouver, Canada, you'll probably get the hang of it more quickly than you might think.
"It can feel pretty overwhelming at first," the mom to 3-year-old twins, Axel and Jaxon, explains. "But once you get the hang of it, it's really not that different than feeding other kids. Just take a deep breath—it's going to be fine."
Your first step: Gather your resources. A good support group can be a real life-saver, like those you can find from the Feeding Tube Awareness Foundation or The Oley Foundation. Those sites are also filled with how-to videos and real-life stories of parents whose kids have grown and thrived with feeding tubes. Also, don't hesitate to ask your child's care team about any local parent support groups.
Here's a guide to what's essential, what's nice to have, and what can make life a little bit easier.
Step 1: Start with the Basics
Your child's care team—doctor, nurse, and dietitian—will prescribe your basic supplies, and a durable medical equipment (DME) company will send it all right to your home. "You'll typically receive a 30 days' worth of the essentials," says Filomena Kersey, R.D., a pediatric dietician at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.
These are the seven items typically included in your initial batch of supplies:
- Feeding pump (which regulates the timing and pace of meals). There are several different types of pumps, including the EnteraLite Infinity and Kangaroo Joey. Which brand you use will generally depend on the brand your insurance covers or the kind your medical supplier provides. (Rest assured, they all work equally well!)
- Tubes. The type of tubes you need will depend on the feeding pump you use. Your DME will provide everything you need to operate your particular system.
- Formula. Your doctor and nutritionist will work together to find the formula that's right for your child. And your DME will send you a supply of formula every month.
- Feeding bags. Typically, your child will go through one bag per day. If you have leftovers, you can store them in the bag and pop them in the fridge between feedings. But you should start each day with a fresh bag.
- Spare tubes. To keep your cleaning duties to a minimum!
- Spare extension tubes. These are tubes that connect with "button" gastronomy tubes. Your medical supplier will send you the ones you'll need.
- Syringes. You'll need to keep a few syringes on hand for small feedings, and to clean out tubes between feedings.
Step 2: Keep it All Clean
Caring for equipment is pretty simple—soap and water do the trick. "I have a dedicated area to wash everything," says Martin. While any kind of soap will do, be sure to rinse the tubes thoroughly. "I also have a bottle-drying rack—the kind used for baby bottles. This keeps everything handy so I can just wash out syringes and tubes and let them air dry."
Step 3: Get Ready for Outings
When she's at home, says Martin, she doesn't really need much more than the basics. But when she's ready to venture outside, a few accessories tend to come in handy. These are her must-haves:
- Backpack. This is usually supplied by the DME company, and it's specially made to fit the pump and the formula, with space to add an ice pack that keeps the formula at a safe temperature. It's just right for daycare or school or for bringing along on family outings.
- Mommy hooks. Like carabiner clips used by rock climbers, these hooks are super-handy for hanging your child's backpack from the stroller handle or the back seat of the car. "For feedings, the bag has to be elevated, so mommy hooks are a must-have for me," explains Martin.
- A set of spare tubes. You never know when a tube may break off—or when little hands may pull it out. And since the site where the tube enters your child's belly can close within an hour, it's super-important to be prepared. "I keep a ziplock bag in the car with spare tubes, a bottle of water, and a syringe," says Martin.
Step 4: Stay Organized
Life with a tubie will be easier if your supplies are organized and at your fingertips. You can find special storage systems online, but your best rule of thumb: Keep it simple.
- Plastic bins. "I have two little plastic bins about 6 inches high," says Martin, "one for each of my boys. After I wash out the syringes, I just let them air dry and put them in the containers."
- Cutlery organizer. For smaller items, like tubes and tiny medicine syringes, Martin uses an inexpensive cutlery organizer purchased at big box store. When the items are clean, she pops them into the organizer, then pops the organizer into a drawer.
- Whiteboard. Keep track of feeding schedules and special instructions from your doctor or dietitian, especially when your child is small.
- Notebook. "The most daunting part of tube-feeding can be dealing with your insurance company," says Rebecca Desrosiers, R.N., pediatric nurse at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire. So be sure to jot down notes of every conversation you have with insurance reps. To get the best care—and the right supplies—you have to be persistent and be an advocate for your child. And to do that, you need to stay organized.
- RELATED: How to Select a Pediatrician
Step 5: Consider Nice-to-Have Items
Here are some items you can live without, but they can make life a little nicer:
- Tubie dolls or stuffed animals. Available from the DME supplier or online, these are fitted out with a mini-feeding tube that looks a lot like the one your child has. "They can really help normalize the process for your child and show kids how it works," says Desrosiers. One maker, Tubie Friends, provides specially outfitted tubie stuffed animals to families free of charge. And here are simple instructions for converting an ordinary doll into a special "tubie doll."
- Picture books. It's fun for your child to read—or listen to—stories about kids just like them. Some good ones: My Belly Has Two Buttons and There's More Than One Way to Eat.
- Adaptive clothing. Though ordinary shirts work just fine, some parents may want to try clothing with cut-outs or slits allowing access to the feeding tube. Here's a link to adaptive clothing suppliers. Target's "Cat and Jack" line has a wide range of reasonably priced adaptive clothing for tubie kids, from babies through teens.
- Squeasy-Gear water bottles. Martin never leaves home without one. "It's totally mess free," she explains, "and a great way to bring formula or blended food along in a jar." Find them here.
- Insulated feeding pump bag covers and totes. These from Wallypop "help keep your tube food cool for hours."