Hellobee

This week is Feeding Tube Awareness Week! Although I’ve been immersed in the feeding tube world for over a year, it’s still very clear to me how much general misconception there is about tubies (which is a cutesy way to refer to a kid with a feeding tube). I’ve written in enormous detail about our decision to get D a surgically implanted G tube, how it changes our daily routine, why he is unable to eat everything by mouth, and a roundup of our favorite feeding tube gear. I’ll try to cover some new ground here, but I open the comments up to any questions you may have – you get a free pass on curiosity!

Tubies come in many sizes and for many reasons. D got his feeding tube placed when he was 6 weeks old and under 8lbs, but some kids get it when they are much older and bigger. It may be needed following a transplant, when they’re lacking nutrition, or some critical medical emergency or developing chronic condition. D needs it because he had a brain injury at birth which primarily affected his swallowing reflex.

Getting a feeding tube is not the worst case scenario. Starving, aspirating food into the lungs, missing meds resulting in major complications – those are the worst case! The feeding tube is a means to an end – your LO getting the nutrients or meds that they need. If you’re walking down this path, it’s because the health care professionals in your life have steered you there. I think the stigma around avoiding feeding tubes is extremely unhelpful to parents in this situation.

A feeding tube is not for the parents’ convenience. Yes, people have insinuated this to me (“you don’t have to feed your kid, how nice!”). The absolutely only reason anyone would have a feeding tube dropped or surgically placed in their LO would be because their LO needed it to survive and thrive.

Tubies may also eat by mouth. D has some restrictions on what he can eat by mouth (he can’t have thin liquids), while other tubies may be totally restricted from eating anything orally. Some of the short gut kids that we meet in the clinic have the feeding tube just to give them formula at a slow rate overnight (to promote slow digestion), and have no oral issues or concerns at all and eat as they wish during they day. Some tubies with chronic conditions may rely on a large quantity of disgusting medications, and the feeding tube is the only way to ensure that they’ll get the right amount every day.

How exactly does a feeding tube work? NG tubes are a small tube that go through the nose or mouth, down the throat and into the tummy where the food ends up. G tubes are surgically placed little pipes that have a port on the outside of the stomach, go through the muscles and everything into the stomach, where the food goes. The G tube has a little balloon on the inside of the stomach that holds it in place, to remove or replace the G tube you take the water out of the balloon. NG tubes are typically taped onto the face to secure the placement. Kids can get “bolus” feedings (meaning a certain volume over a relatively short amount of time, like 8oz in 30 minutes) or “continuous” feedings (meaning with the use of a pump, they get a slow volume of formula over a long period of time, like 30oz in 24 hours). Typically either breastmilk, formula, or blended food is given via the tube.

 
 images courtesy of the Royal Children’s Hospital and Johns Hopkins

A parent can do 99% of the feeding tube care at home. The nurses at the hospital teach a lot, and the feeding tube companies have lots of videos on youtube for quick reference. I change D’s feeding tube out at home every 3 months-ish. The only danger would be if the tube gets pulled out and isn’t replaced with a new one quickly the site could close, and a new tube would have to be surgically placed. NG tubes get changed every week by the parents. The process is uncomfortable but not painful – for G tubes I’ve actually done it while D was asleep and it didn’t even wake him!

A feeding tube is not permanent. I’ve been told that whenever we’re sure D is done with his feeding tube, we can just pop it out and throw a bandaid on top, and he’ll heal up on his own. This may be exaggerating some, but at the most he’ll need a few stitches – even if he has it in for years! Of course, some LOs or adults may need feeding tubes permanently (and D may well be one of those people), but the tube itself is theoretically completely removeable. Many kids who will need a feeding tube for the long term prefer a G tube over an NG, but if surgery is dangerous or would be too stressful, an NG can be used indefinitely as well. That said, once someone is dependent on a feeding tube, it can take a long time and lots of therapy to get them eating (and experiencing hunger) typically.

We tape D’s G tube extension to his body, throw a onesie on top with the extension coming out of the pant leg, put on his backpack and go!

A tubie doesn’t need special clothes. We’ve always gotten by with regular onesies and store-bought clothes. We undress D to tend to his G tube site, but you can get body suits with tummy access, other adaptive clothing, or even just larger size onesies online. I’ve avoided full zip pjs since I don’t like having his tube come out by his neck, and I prefer to have the line access outside of his clothes for easy clamping and unclamping. For NG tubes (or broviacs!) you’ll want to avoid putting clothes over the head (so when you change them you’re not dragging the line through dirty clothes or having to detach it), so you can either do onesies from the bottom up, or snap up sleepers. When D was in the NICU, snap sleepers were by far the easiest to deal with all the extra wires and leads. Accessories wise, I’ve found a lot of helpful items on etsy like cloth button covers (which help avoid granulation tissue) and cloth line locks. I also made D his own backpack so he can carry his bag & pump around by himself when he’s on the go. Speaking of on the go…

A tubie can do almost everything a non-tubie can. Tubies can eat at a restaurant – although they may not be ordering from the menu! Tubies can take a bath and go swimming. Tubies can sleep in regular beds and regular cribs. Tubies need tummy time when they’re newborns, sleep on their tummies, tummy crawl when they’re infants, and climb all over everything just like any other kid. Tubies can play sports and go to school. Besides recovery time from surgery, D hasn’t let his G tube slow him down at all.

D’s backpack hangs on an IV pole outside his crib as he sleeps, with the line running through the slats.

From their website:

“The Feeding Tube Awareness Foundation was founded in 2010 by parents of children who are tube fed, who understand the emotional and practical challenges associated with raising a child who is complex. The mission of the organization is to raise positive awareness of tube feeding, to increase the visibility and acceptance of tube feeding in our communities, and to help parents get the practical knowledge and support they need.”

This post is intended to be in that same spirit – I hope you’ve found it informative and helpful! I’m happy to try to tackle any questions you may have.

image courtesy of FTA – the thing around the heart is an extension piece for a G tube!