So, you’ve been told your child needs a feeding tube. Deep breath. This can be a scary thing to hear, but I’m here to assure you, you’ve got this, momma!
There are a variety of reasons why a child may need a feeding tube, but all situations have this in common: Your child is not able to get all of the nutrition and calories he or she needs by mouth so he or she needs an alternate method. This can be a hard pill to swallow. This is not how you imagined feeding your child. But, it’s what your child needs to survive.
Unless your child’s surgeon or physician has personal experience with a feeding tube, they can’t actually tell you much about the day-to-day of what to expect when you go home. In the two years that my daughter Avery has had her G-button, I’ve learned a few things that I’m happy to share with you.
Most people will tell you they have a love/hate relationship with their child’s feeding tube. I’m no different. There are definite positives and negatives. We’ll start out with the not so fun stuff, but don’t worry, there’s some really good stuff too!
1. It’s messy. SO messy. Whether you accidentally “feed the bed” (your child pulls out the feeding extension during a nighttime feed), you don’t have the feeding extension properly hooked up to your child and it explodes all over their face, or you’re cleaning out a syringe and it sprays water on the ceiling, there are no two ways about it, you will make a mess. It’s best to accept it and laugh when it happens. Otherwise, you will find yourself getting REALLY frustrated . . . a lot.
2. It will affect how you dress your child. It’s all about having access to your child’s feeding tube, and whether or not you are bolus feeding or doing continuous feeds (see #4). Onesies, one-piece outfits, and those incredibly convenient zip up footed pajamas might not work for you. I have seen many parents who adapt their child’s clothing to be able to access their child’s feeding tube. I’m just not that crafty!
3. You will become a blending expert and should probably invest in a high-powered blender like a Vitamix. Unless your child only takes formula, you will need a high powered blender to make most foods smooth enough to be able to flow through the feeding extension.
4. You will learn a new language. There’s a whole new world of terms that you will become very familiar with. Words like granulation tissue, flushing and venting, blended diet, microvasive, mickey, volume, rate, tubies (the affectionate name some parents give their kids who have feeding tubes), bolus, gravity, and continuous feeds may sound like Greek to you now, but I assure you, you’ll learn.
5. You may get funny looks. Whether your child lifts up her shirt and exposes her feeding tube in public, goes swimming at a public pool, or you are feeding your child in public, people may give you some strange looks. Feeding tubes aren’t the norm so it’s only natural for people to do a double take if they’ve never seen one before. No biggie — take it all in stride and ignore it OR use it as an opportunity to educate them.
6. It will be your BEST FRIEND when your child is sick. I’ve saved the best for last! This is where you will make all the other non-tubie moms JEALOUS! Have a yucky tasting medicine you have to give your child? Your child isn’t taking in enough liquids? No problem! Just use his feeding tube. There have been so many times that Avery’s feeding tube has kept us out of the hospital for dehydration. Even when she was in the hospital earlier this year, it kept her from having to get an IV because they could give her fluids and medication through her feeding tube.
At this moment, you may feel alone. That is completely understandable. More than likely, you don’t know anyone personally whose child has a feeding tube. But, I can assure you, there are actually a lot of us “feeding tube moms” out there. Fort Worth Mom’s Blog actually has three feeding tube moms just in our group of writers. There are many Facebook groups dedicated to this topic. Join them and become part of the community.
Do you have questions for me? I’m happy to answer!
Do we have any feeding tube mamas out there reading this? Let me know what I might have left out!
The Fort Worth Moms Blog hosts 19 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.