Feeding Tube Resource Guide for Parents
From The Silly Lily Foundation
www.sillylilyfoundation.org | @sillylilyfoundation

You Are Not Alone
Whether this journey is brand new or something you've been navigating for a while, we want you to know: you are doing an incredible job. Having a child with a feeding tube can bring questions, emotions, and challenges—but it can also bring connection, strength, and a new kind of routine filled with resilience and love. This guide offers support, reassurance, and helpful tools along the way.

What is a Feeding Tube?
A feeding tube provides nutrition, hydration, and/or medications when a child cannot eat enough by mouth. It can be temporary or long-term, depending on your child’s medical needs.

Common types include:

  • NG tube (Nasogastric): through the nose to the stomach

  • G-tube (Gastrostomy): directly into the stomach

  • J-tube (Jejunostomy): into the small intestine

  • GJ-tube: accesses both stomach and intestine

Your child is still just as capable of joy, learning, and adventure—they’re just fueled a little differently!

Helpful Supplies to Have On Hand

  • Feeding pump + charger

  • Extension tubing

  • Feeding bags

  • Syringes (for flushing, venting, feeding)

  • Formula or blenderized food

  • Clean water for flushes

  • Tape, gauze, barrier cream, and G-tube pads

  • Extra tube (if trained to replace)

  • Emergency info card or medication list

  • Extra clothes (in case of leaks)

  • Small medical backpack or carrying bag

School & Community Tips

  • Work with your care team to create a 504 Plan or IEP

  • Ensure the school nurse and teachers understand basic tube care

  • Role-play feeding routines using books or medical play

  • Consider sending a letter to classmates or caregivers to help explain tube feeding in an age-appropriate way (we can help with this!)

Common Challenges & Encouragement

  • Guilt or grief is normal. It’s okay to grieve the path you didn’t expect. You’re still an amazing parent.

  • Feeding tubes aren’t “giving up.” They’re tools to help your child thrive.

  • You are the expert on your child. Your voice matters in every room—hospital, school, and beyond.

  • Trust your instincts. If something doesn’t feel right, it’s okay to ask questions or seek another opinion.

You Might Also Need...

  • Support groups (local or online) – connecting with other parents is healing

  • GI specialists & dietitians – for personalized guidance

  • Child life specialists – for age-appropriate explanations and coping

  • Therapy – for your child or your family (you deserve support too!)

  • Medical supply companies – find one that listens, advocates, and delivers on time

Recommended Resources
These trusted tools and communities can guide and uplift you:

  • Feeding Tube Awareness Foundation – Tips, advocacy, videos, and printable handouts

  • Silly Lily and Her Feeding Tube – A gentle, empowering story for children navigating life with a feeding tube

  • My Belly Has Two Buttons by Meikele Lee – A sweet children’s book about G-tubes

  • Tubie Friends: Stuffed animals with feeding tubes for comfort and medical play

  • Facebook Support Groups:

    • Parents of Tubie Kids

    • Feeding Tube Awareness Support Group

  • YouTube Channels – Real-life demos, family stories, and Q&As (always verify credibility)

Frequently Asked Questions (FAQ)

Q: Will my child ever eat by mouth again?
A: Some do, some don’t—it depends on the medical reason for the tube. Either way, tube feeding is helping your child grow and thrive.

Q: Can my child go swimming with a feeding tube?
A: Often, yes—with guidance. Many families use waterproof dressings or covers. Always check with your care team first.

Q: How do I explain the tube to others or my child’s friends?

For children or peers:
Keep it simple and positive. Try:

  • “This is how their body gets food and medicine.”

  • “Some people eat with their mouths, some with a tube—it’s just another way to stay strong!”

Books like Silly Lily and Her Feeding Tube or stuffed animals with pretend tubes can help make it more relatable.

For adults (teachers, caregivers, extended family):
Use calm, confident language to educate and normalize the tube:

  • “My child uses a feeding tube for nutrition and medications. It supports their health and growth.”

  • “It’s a medical device, not a sign of weakness—just one of many tools we use to help them thrive.”

You can share more detail if you’re comfortable, but you don’t owe anyone a full explanation. If you'd like help writing a caregiver letter or school handout, we’re happy to support you.

Q: What if my child pulls the tube out?
A: Have an emergency plan and know who to contact. Some families are trained to replace tubes at home—ask your care team if that’s an option.

Q: What if I feel overwhelmed?
A: That’s completely normal. You are not alone. Support groups, therapy, or even just talking to another tubie parent can make a big difference.

💌 We’re Here for You
Email: sillylilyfoundation@gmail.com
Website: www.sillylilyfoundation.org