Guest Post by Tammy, founder of Tubie Love
Back in 2010, we became part of the tube feeding community when our twin boys decided to arrive at 26 weeks. I had no idea about tube feeding back then and like most parents when faced with a new medical challenge, found myself nodding along when the doctors and NICU nurses were running through all the medical terms. My husband and I were in a bit of daze back then as we were dealing with the grief of losing our eldest son, James a few days after the boys were born and also trying to get to grips with all the medical issues our youngest son, Aidan was dealing with.
In a way, I guess we were fortunate in that by the time Aidan came home, after a year at Wellington Hospital NICU (best 1st birthday present ever!), we felt fairly confident in this new world of tube feeding. Not everyone experiences that, so here’s a little guide to help navigate some of those medical terms so hopefully you can feel less overwhelmed and a lot more in control.
G-tube, PEG or Mic-key button, NG or NJ tube, venting, bolus vs pump feeding - wait, what??!! All terms that are mentioned in the beginning when you may still be trying to wrap your head around the fact that your child even needs a feeding tube.
KidsHealth have a great page on tube feeding explaining in detail the different types of tubes so please check it out for a more detailed explanation but in general here are some of the terms you may hear. SEE HERE
Nasogastric (NG) tubes and Nasojejunal (NJ) tubes
If your child starts off with a nasogastric or NG tube, this tube will be placed into your child's nose, which then runs down your child's food canal (oesophagus) to their stomach.
In some cases, the stomach may need to avoided (if for example, your child can’t tolerate feeding to the stomach) and in this case the tube will end in a part of the intestine. This type of nasal tube is called a nasojejunal or NJ tube.
Gastrostomy tubes
A gastrostomy tube goes directly into your child's stomach from the skin of your child's tummy.
Your child's doctor will discuss the best type of tube with you. Types of gastrostomy tubes include retention disk PEG, PEG-J, balloon gastrostomy or Mic-Key button.
Bolus feeds or pump feeds
Everyone is different and your child’s dietician/feeding team will give you a feeding plan specifically for your child depending on your child’s medical condition. Specialised liquid feeds are only available on prescription from your dietitian, family doctor, or paediatrician. There are 2 ways you can feed your child:
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Bolus feeds - larger amounts of liquid feed given at set times over the day so that it's like meal times
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Small amounts given continuously by a feeding pump
Venting the G-tube
We all know that gas/wind is painful. Venting the G-tube is basically letting the gas/wind our of your child’s stomach through the tube. Your home reach/community nurse will show you how but here’s a link from Starship and also a 2-minute video from Children’s Wisconsin.
Tube feeding can be a roller coaster of emotions. On one hand, relief that your child is getting all the nutrition, hydration and medications that they need but there are also the emotions that come with not having an oral eater (some children are still able to eat by mouth while they have a feeding tube).
It can be emotionally overwhelming especially in the beginning but please remember you are not alone. Aside from support from your feeding team and other professionals, we have a wonderful support group for tube fed families here in New Zealand (includes members from Australia and internationally). Tube Feeding NZ is private Facebook group for parents/care givers of tube fed children and also for adults who are tube fed – we don’t provide medical advice but it is a great place to get support and advice from other families navigating the ups and downs of tube feeding.
~ Tammy