A Dietitian’s Tips for Your Child’s Feeding Tube Journey, Beyond the Basics

tube feeding supplies and vegetables on a table

Parenting is filled with challenges, and even more so when your child has medical needs. Choosing a gastrostomy tube is one of those challenging decisions, often filled with many “what-ifs”.

And once that decision is made, the journey typically gets a bit more challenging. Entering the world of tube feeding is often very overwhelming, there’s so much to learn, and sometimes it feels like you’re figuring it out with no guide.

But here’s the good news – you don’t have to venture this alone! There is an amazing community of people here to back you up and guide you.

Over the years working as a clinical dietitian, I’ve helped thousands of families navigate tube feeding for their child. Along the way, I’ve learned so much from parents and caregivers, like you, who share real-world experience and practical tips to make it a little easier.

So, in this blog, we’ll uncover all those shared insights and advice – aiming to ease your path and equip you with the knowledge you need. Let’s dive in!

1. You Have Options When It Comes to Your Tube Feeding Equipment

Believe it or not, you have choices when it comes to tube feeding equipment. There’s a range of extension tubes, more than just one type of Gtube button and feeding pump, and loads of adaptors to make everything fit just right for you.

Tube feeding bag

And of course, the tube feeding community always has the best insights. Looking for an understanding and judgment-free community group? 

Check out the Blended Tube Feeding Made Simple Membership – it includes community support and direct access to me! Plus, there’s a dedicated section within the group solely for tube feeding equipment questions. So, instead of feeling overwhelmed, you can quickly find the answers you need.

2. There are Better Syringes for Tube Feeding

Have you ever felt like the syringes you get from the supply company just aren’t cutting it? There are better options out there! I’m talking about syringes with silicone o-ring plungers.

The standard syringes you receive typically have a rubber grommet plunger which, when wet, expands, making it tough to push. These are essentially single-use syringes.

Hilarie holding feeding syringe

On the other hand, syringes with silicone o-ring plungers glide effortlessly, and they’re reusable – making them perfect for those with feeding tubes.

P.S. Did you know this thicker food has been show to help with reflux? Having a syringe that is easy to push is especially useful when dealing with thicker blended food or commercial real food products.

Another perk is they’re eco-friendly, cutting down on waste. I’m a big fan of the Basik O-Ring syringes! You can get them at a discounted price with code “HD1”. It’s good for their variety of sizes and types, and does not expire.

Just so you know, if you use the code, Blended Tube Feeding receives a very small portion. Thank you for supporting this small business!

3. Tube Feeding On-The-Go Can Be Easier

Tube feeding on the road can offer up different challenges, but there are tools that make it simpler! Here’s a few of my favorites:

  • Small Bolink Cap: Connects reusable pouches and some store bought puree pouches directly to extension tubing or PEG tubes. You can pre fill these pouches with blended food, formula or water to make things easier!
Bolee bag
  • Bolee Bag + Large Bolink Cap: If your meal size is bigger, you may enjoy the Bolee Bag! This holds 13 ounces of food or liquid, and with the Large Bolink Cap, connects directly to extension tubing or PEG tubes. You can even get these covered by insurance.
  • Enfit Transfer Lid: These lids fit on Bolee Bags and some baby bottles so you can easily transfer food or formula to Enfit syringes, mess free!
  • Squeasy Gear bottles: Store your blended food, formula, or water in these bottles. Fill your catheter tip syringe mess free. Already switched to Enfit? Try the “Christmas Tree Adapter”, which turns your Enfit tip into a catheter tip!

4. You Have More Options Than Synthetic Tube Feeding Formula

Synthetic formula may have been the only option presented to you, but you have more choice than this! You can find commercial formula products that are 100% real food, and some that are real food based, and often these can be covered by insurance! You can learn more about these products and what sets one apart from the other to decide what’s best for you here.

woman holding foods for blended tube feeding on a cutting board

There is also the option to blend real food at home for tube feeding. In my experience, real food helps kids feel so much better. Their digestive issues often resolve or improve significantly, which makes the tube feeding plan so much more manageable. Plus, this allows everyone in the family to share the same meal and gives you choice back in how you feed your loved one.

Curious to try this but not sure where to start? Blended Tube Feeding Made Simple takes away the big learning curve and makes it easy to try real food so you can finally get some relief and find a plan that actually works for you.

5. You May Have to Wait to Blend Food for Tube Feeding

You may be excited to try some real food, but if your child just had their feeding tube placed, your team might suggest holding off on real food for a bit to allow the site to heal.

Although it is easy to avoid clogs with the right equipment, if a clog occurs, the tube has to be switched out. That’s not great for a spot that’s still healing. If you do want to start with real food, commercial real food products can be a good compromise.

If your team gives the okay to start blending food at home, using a high-powered blender that liquifies most foods is a huge help. You may also consider using a fine mesh strainer as well just to be sure any unblended pieces are sifted out.

6. Find a Routine that Fits Your Reality

hilarie in front of computer

Your team comes up with a plan that is perfect on paper and meets nutrition needs. The problem? This doesn’t actually work for you at home. You end up trying to tweak things on your own, and may not tell your team. You feel guilty you’re not sticking to the plan, but also that your team doesn’t truly understand your side of things.

On their end, they might assume all is well, unaware that you’re struggling. And if there are issues with growth or tolerance, they just tweak the plan you’ve already veered from so you’re still on your own.

Unfortunately, this is so common. This is why open communication is key to finding a solution that truly works for everyone. If your team doesn’t seem to be on the same page as you, consider looking for one that ensure your concerns and realities are heard!

7. Consider Giving Water Flushes Before Tube Fed Meals

In my experience, families are usually advised to provide water flushes after giving the formula or blended food.

But here’s a tip: it might be easier for some to handle water before meals rather than after.

Why? When water is given post-meal, it mixes with the food or formula, which then needs to be digested as a whole. But water on its own gets absorbed quickly without digestion.

This is true for people who eat by mouth too. If liquids could only be consumed after eating, it would be harder to stay hydrated, right?

Instead, give the water flush before the meal, wait about 10-15 minutes, then provide the food or formula. Finish up with a small water flush to clear the tubing. You can learn more simple, yet effective tweaks to improve feeding intolerance here.

Always remember to chat with your healthcare team before making changes. This tip might not suit everyone, but it’s worth discussing.

8. Regular Water Flushes Keep the Feeding Tube Clean

woman holding feeding tube component

To avoid clogs and keep things clean, always rinse the tube and extension with water after feeding.

Regular flushes ensure no leftover residue builds up, which might lead to clogs. This also helps prevent the growth of harmful bacteria. For more tips on preventing tube clogs, especially when using real food, check out this post.

Pro Tip: Having trouble with hard and dirty extension tubes? A soak in warm, soapy water can help. Once it’s soaked, take the clamp and partially close it. Then slide it along the tube. This trick can loosen trapped food and make the tube more flexible again.

9. Understanding Different Methods of Tube Feeding: Advantages and Disadvantages

There are three main ways to tube feed: By letting it flow using gravity, pushing it with a syringe, or using a special machine called a feeding pump.

When using a pump or gravity, the food usually needs to be thin so it can flow without issues. However, formula or blended food that is overly thin may contribute to increased reflux (read more about this here).

For many families I’ve worked with, using a syringe to push thicker real food through has really helped to improve digestive issues. For others, feeding pumps are still necessary.

For example, if meals need to be given a little slower for best tolerance, a pump allows you help your child with other activities like oral intake.

Feeding pumps can also be a game changer for parents doing overnight feeds. Often babies are sent home from the hospital on a plan that mimics what the nurses did, feeding every 3 hours around the clock.

There’s a lot of additional steps with tube feeding, so this may not be feasible for you! A pump would allow for a continuous feed throughout the night if appropriate.

Always chat with your team about this first, there may be a reason this is not safe like an NG tube that might shift out of place.

10. Always Have an Emergency Medical Supply Kit

Being prepared for emergencies is crucial. Create a kit stocked with essentials like extra syringes, extension sets, feeding bags, adapters, and more. Keeping an extra carton of formula is wise, especially for those extended appointment days.

For those typically providing blended home cooked meals, it can be helpful to identify a commercial real food product your child can tolerate. You can keep this in your kit instead of synthetic formula if you prefer.

Commercial products are also great for traveling, for hospital stays if home cooked food is not allow, or those days you don’t have blended meals in the freezer and are just too tired to cook.

You can also include store-bought puree pouches in your kit. With the Small Bolink Cap, they can be connected directly to the extension tubing, perfect for a quick snack on the go!

Lastly, consider the digital tool, My Mejo. It’s a digital journal that makes it easy for caregivers to simplify, organize, and share their love ones most important care information in one spot. It’s free and easy to use, and you won’t have to repeat yourself as often!

mejo digital app

Always remember, you’re part of a bigger community!

I hope these tips and insights help smooth your path in the world of tube feeding. By sharing our collective wisdom, we can make tube feeding a more positive experience for everyone involved.

If you’re interested in learning how to blend real food for your child to help improve their digestion, I’d love to support you inside Blended Tube Feeding Made Simple! This provides families with a straightforward, clear plan to transitioning to real food for tube feeding, all while effortlessly meeting calorie needs just like formula.

The goal of Blended Tube Feeding Made Simple is to take work off your plate, help you regain control of your child’s health and actually tackle the root cause of feeding issues with real food. Take the first step towards relief and better outcomes by clicking the link above to learn more. If you have any questions, don’t hesitate to contact me!

Hilarie, RD, CSP

*Disclaimer: The information and education provided here is not intended or implied to supplement or replace professional medical advice. Always check with your own medical professional before trying to implement any information provided here

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