6 Tips for New Tubie Parents

Like any new thing, tube feeding can be challenging at the start. We want you to know that it’s normal to feel a little overwhelmed, but with some help and structure, you can rise above the challenges that may come your way. Here are six tips to help set you up for success as you navigate this new feeding journey. 

1. Remind yourself you can do this!

You should feel empowered to find a tube feeding practice that works for your child. This means that you should be confident to talk to your healthcare team anytime about adjusting their feeding plan if needed. You know your child best, and you play a critical role in determining what’s working and what’s not. The formula, feeding method, schedule, or even the type of tube your child uses can be changed! 

2. Connect with others.

Being a new tubie parent may feel overwhelming, but it does get easier. Remember that you’re not alone! Join a tube parenting group online — whether it’s through a Facebook or Instagram group or an organization like The Oley Foundation, try finding an online parenting group. If nothing else, you’ll find comfort knowing that you’re not alone in this new journey.   

3. Arm yourself with knowledge.

Don’t be afraid to ask questions. There are many tube feeding formula options and equipment out there to consider. The more you know, the more empowered you will feel.   

To find the right formula for your child, read this article that explores calorie concentration, protein type, types of fiber, and tube placements. This will give you a good starting point to have additional conversations with your child’s healthcare professional.  We’ve also compiled a list of resources, from support groups to medical supply companies to tubie-friendly clothing, to help give you the tools you need while on this new journey. 

4. Stay organized.

Finding an organization method is key to set you up for success. Record your child’s treatment plan and type of feeding. Whatever method you decide, stick to recording your child’s feeding plan so you can feel confident about the new process.   

Ideas of information you can record to keep you organized:  

• Your child’s formula name. 

• Total containers, calories, mL, and ounces of formula per day. 

• Feeding method type: syringe, gravity bag, pump, or Bolee® Bag. 

• Pump schedule: how many mL per hour, times per day, etc.  

• Water flushing schedule. 

• Feeding tube manufacturing information. 

5. Stay Flexible. 

Kids who eat solid food diets don’t eat the exact same amount at the exact time each day. If your child is receiving their calorie and fluid goals, you can be flexible with feeding schedules. Your child will give you cues to their hunger and thirst needs. Working with your health care team, you can determine a feeding plan that works for you and your child’s life.   

As you know more than anyone, just because your child’s feeding habits have changed, doesn’t mean the fun is over! We’ve found amazing businesses that make pediatric tubie accessories and even toys to help normalize their feeding journey and keep it fun.  

6. Give yourself grace.

Tubie life can be a significant adjustment for the whole family. Most days won’t be perfect and that’s okay! Set realistic expectations for yourself, celebrate the small victories, and give yourself grace as you discover this new territory for you and your child.  

4. Stay organized.

Finding an organization method is key to set you up for success. Record your child’s treatment plan and type of feeding. Whatever method you decide, stick to recording your child’s feeding plan so you can feel confident about the new process.

Ideas of information you can record to keep you organized:

• Your child’s formula name.

• Total containers, calories, mL, and ounces of formula per day.

• Feeding method type: syringe, gravity bag, pump, or Bolee® Bag.

• Pump schedule: how many mL per hour, times per day, etc.

• Water flushing schedule.

• Feeding tube manufacturing information.

5. Stay Flexible.

Kids who eat solid food diets don’t eat the exact same amount at the exact time each day. If your child is receiving their calorie and fluid goals, you can be flexible with feeding schedules. Your child will give you cues to their hunger and thirst needs. Working with your health care team, you can determine a feeding plan that works for you and your child’s life.

As you know more than anyone, just because your child’s feeding habits have changed, doesn’t mean the fun is over! We’ve found amazing businesses[m1] that make pediatric tubie accessories and even toys to help normalize their feeding journey and keep it fun.

6. Give yourself grace.

Tubie life can be a significant adjustment for the whole family. Most days won’t be perfect and that’s okay! Set realistic expectations for yourself, celebrate the small victories, and give yourself grace as you discover this new territory for you and your child.

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