Whether you just left the NICU or have been tube feeding your child for years, you are in the right place. Parents of a tube fed child have their hands full! In this post, we will talk about how to make life a little simpler.
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It is likely that if your child is a tube feeder, they have a packed schedule. A day full of water flushes, mealtimes, medications, therapies and doctors' visits. As a caregiver it can be so easy to forget pieces of this constant puzzle. Here are some ways to help you keep things organized!
1. There is an App for Everything
- CareZone is great for tracking medications. It allows you to scan pictures of your child's prescriptions and store them to share with doctors or home nursing. You can also set up automatic reminders that send notifications to your phone when it's time for medication administration.
- Baby Connect works best for those with children under one. It allows you to chart baby's sleep, mood, medicines, photos, activities, and even your pumping. You are also able to connect your calendar with multiple caregivers such as mom, dad, grandparents, nursing or daycare workers.
- Cozi is a popular family organizer, allowing you to sync your calendars with others in the household, set up alerts, appointments, and even make to-do lists. The meal planning feature may also work well for families administering blenderized tube feedings as recipes can be stored in the app.
2. Try Your Best to Sort Inventory
- Each month you likely get tons of supplies delivered all at once in big boxes which can be overwhelming! If you can figure out a system for all of your tubes, bags, syringes, and formula it will make things seem more manageable. Plus, you will know where things are when you need them quickly. Don't be afraid to look to other "tubie" moms for guidance on how they do things. Here is a mom with a great routine!
3. Drying Rack
All of the supplies that just got delivered will need to be cleaned at some point. Consider investing in a nice-quality, easy-to-store rack for drying out bottles, syringes, tubes, pacifiers, and toys after washing them.
4. Color Coding
- For the complex kids who have IVs, catheters, and feeding tube lines it can be safe and effective to develop a color-coding system. You can place a simple tab on the tubing which matches the extension you want to be your enteral nutrition line to keep things clear. Be sure to educate any other caregivers about your system.
There are a variety of companies and organizations out there whose mission is to make tube feeding life simpler for you and your child. Use them! Here are just a few to check out. Be aware I am not sponsored or paid by any of the following companies.
- FreeArm Tube Feeding Assistant is a great product to simplify feeding time. Their flexible arm clamps to almost any surface like bed rails, strollers, tables, or cribs. This small, yet strong tool can hold gravity bags, pump feeds and syringes while eliminating the need for an IV pole. Parents have more mobility at feeding times and it allows for easier feeding on-the-go. Their website mentions that 55% of people before FreeArm would skip feeds when leaving the house, but with FreeArm 72% of people receive their scheduled feed.
-I am such a fan of this product that I reached out to them and set up a phone call. It was great to hear from a mom who has been in your shoes and knows all of the difficulties you face. If you are interested in trying FreeArm you can use the coupon code TUBIELIFE20 for 20% off.
2. Adaptive Clothing
- Adaptive clothing is meant to allow easier access to your child's tube feeding site and to make dressing or undressing simpler. There are tons of companies out there making these garments for tube fed children specifically such as Kozie Clothes or even Target.
- One small business that I am particularly fond of is Tubesies. You may have seen them on Good Morning America back in October. I reached out to them and got to learn more about what sets them apart from other adaptive clothing. Their feeding friendly bodysuits for kids have a waterproof flap covering the tube that helps with any leakage and the medical grade velcro fastener helps with wear and tear. Use my coupon code LEMON20 for a discount on their products.
- Backpacks that can store a pump and feeding bag is perfect for kids who are on the go or would like their tube feeding supplies to be more discreet. The Feeding Tube Awareness website has a great list complied of specialized backpacks. Insurance may even cover these! However, there are ways to convert small backpacks into feeding tube backpacks at home. Here's one blog that explains how.
4. Other Accessories
- Button pads, covers, belts, stickers, velcro and pockets are all helpful! Check out the resources page on the Feeding Tube Awareness Website for products that they recommend.
1. Staying Connected to Your Child
- Remember that you can still make mealtime enjoyable for you and your child even if their meal is going through their tube. The FreeArm that I mentioned previously gives you more feeding time flexibility. At times, you may choose to use that freedom to take a much needed break, but it also allows for good opportunities to bond while your hands are open.
Consider having some skin-to-skin time with your tube fed infant or sitting your older child in a high chair and playing games. The following are great ideas for sensory play:
- Searching through bins of rice or dry beans for dollar size toys
- Water play with bath toys or produce
- Painting with food (pudding, yogurt, mashed potatoes)
- Finger painting
2. Your Child Connecting to Their Tube
- Your kiddo has something different about their body than others around them. Medical devices can feel foreign and scary. There are ways to help them prepare for and feel more comfortable with their feeding tube.
Toys - Check out Tubie Friends or Rainer Dolls to find a little friend that your child can bond with! These stuffed animals and dolls promote diversity and inclusion as they have medical equipment that mirror your childs'. You may also consider making one at home. Here is a guide to making a feeding tube equipped baby doll yourself.
Books - Be on the lookout for books that you can read with your child. Two that I like are "The Adventures of Team Super Tubie" by Kevin Cannon and Kristin Meyer and "My Belly Has Two Buttons" by Meikele Lee.
3. Joining the tube feeding community
- Seek out support groups for "tubie" caregivers. While most are not meeting in person during the COVID-19 pandemic, there are many online options. Try following #tubiemoms or #feedingtubeawareness on Instagram or joining tube feeding Facebook groups. You can also follow my page @mollywilliamsRDN on social media where I frequently post tube feeding content. Here are other websites that provide awesome resources and educational materials.
Feeding Tube Awareness Foundation helps parents help other parents by sharing practical experience tube-feeding infants and children. Their Facebook page is touted as the largest online support group for tube feeding in the world.
The Oley Foundation is a national organization whose goal is to enrich the lives of those living with home tube feeding by providing support in the form of newsletters, a video library, an online community forum, regional support groups and more.
Wolf and Friends is a community of both parents and providers. Their goal is to bring special-needs parents and providers together on one social platform so families can make informed decisions about their children’s education, health, wellness and future.
Feeding Matters offers emotional support, resources and guidance for caregivers who may feel isolated and overwhelmed by feeding disorders and tube feeding.
The final tip is one that is super important - stay consistent with your follow up as much as possible. Your Gastrointestinal Doctor, Dietitian, and Therapists all want to work together to make sure your child is thriving on their tube.
As a Pediatric Dietitian, I set goals for each of my patients' specific tube feeding regimens. Your child's metabolism, growth, and activity level are constantly evolving. Therefore, their tube feeding plan will change over time. This is especially true if your child is eating both orally and via tube.
If you do not have a Dietitian that is helping you meet the nutrition goals you have set for your tube feeder, then reach out to me here! I would love to help.