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. Right now, you’re probably pretty overwhelmed. You’ve just been thrown into a world you never expected to be a part of, and that can be pretty scary. There are tubes and syringes, feeding diaries and a pump, and possibly a stoma if a G, GJ, or J tube is involved. I’m not going to tell you it will all be easy. There can be both emotional and practical challenges. But it will get easier.
The first month or so after your child gets his or her feeding tube can be hard because you’re still getting used to everything. But for me, it soon became second nature, and I got into a rhythm with the feeding process. In my experience, the person who is sometimes hardest on you throughout your journey is you. Process what you and your child are going through when you need to, but then get back up and keep going. If mum-guilt starts to creep up on you, remember — you are doing this for your child.
Please try not to worry about all the things that could happen, like granulation tissue or accidental tube pullouts. I can remember accidentally pulling my daughter’s NG (nasogastric) tube out when she was a baby, but I never panicked. I just reached for my camera because I’d never seen her pretty little face with out a tube stuck to it. Take each day as it comes and deal with each issue as it pops up.
Educate yourself, and learn as much as you can about tube feeding and your child’s condition, if you know what it is. You’re a medical mum or dad now, and you’ll manage your new normal better if you’re prepared and organized.
Unless your child’s surgeon or consultant has personal experience with a feeding tube, he or she can’t actually tell you much about the day-to-day of what to expect when you go home. In the seven years that my daughter Jessica has had her tube, I’ve learned a few things that I’m happy to share with you all. I have a love/hate relationship with Jessica’s feeding tube, but there are definitely positives and negatives. I’ll start with a few of my favorites.
It can be messy… SO MESSY! You may accidentally “feed the bed” when your child pulls out the feeding extension during a nighttime feed, or you may have the feeding extension improperly hooked up to your child so it explodes all over, or you may spray water on the ceiling cleaning out a syringe. 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.
There’s a whole new world of terms that you will become very familiar with. Words like granulation tissue, flushing and venting, mic-key, mini, peg, volume, rate, tubies (the affectionate name some parents give their kids who have feeding tubes), bolus, gravity, and continuous feeds. It may sound like Greek to you now, but I assure you, you’ll learn.
The feeding tube will be your Best Friend when your child becomes sick. Have a yucky tasting medicine you have to give your child? Your child isn’t taking in enough fluids? Not a problem! Just use the feeding tube. There have been so many times that Jessica’s feeding tube has kept us out of the hospital for dehydration. Even when she has been in the hospital they just give her fluids and medication through her feeding tube.
Jessica has a blended diet because unfortunately she cannot tolerate formula. I invested in a high-powered blender called a Vitamix this makes most foods smooth enough to be able to flow through her feeding extension, which has made things much easier.
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. Don’t be embarrassed by the stares and questions you’ll get from well-meaning friends, family, and strangers. Smile back or use the moment to educate someone who doesn’t know about feeding tubes.
You may feel alone at the beginning of your tube feeding journey, and that is completely understandable. More than likely, you won’t know anyone personally whose child has a feeding tube. But I can assure you, there are actually a lot of us feeding tube parents/carers out there. Also talk to your family and friends about what you’re going through. Don’t close yourself off from a potentially valuable support network. They may not understand everything, but there’s a good chance they want to support you any way in which they can.
It’s important to know that feeding tubes offer hope. Sure, it’s an alternative way of eating by mouth, but it is one that gives children — and all people with no other alternative — a way to thrive.