Preemies: Feeding Tubes

Some preemies experience feeding difficulties that can persist well beyond the time spent in the neonatal intensive care unit. The following article was prepared by Traci Nagy, Founder of Feeding Tube Awareness Foundation.

Introduction to Feeding Tubes

I guess I should start by saying, my son wasn’t a preemie. However, he presented as one due to his rare chromosome disorder and delayed development. He has been tube fed since he was 2 months old. In order to get more of a preemie perspective, I did talk to parents of preemies specifically about what information about feeding tubes would have been useful early on.

A little about tube feeding

It sounds so scary, medically complicated and, frankly, not what you planned on when you were preparing for your new baby. But, when your child is unable to latch on, coordinate a suck from a bottle, or manage to drink enough to live, grow and thrive, it becomes a medical necessity. For many parents, this may happen in the NICU. For others, it isn’t until later once you are home.

At about 2 months, we hit a point where my son just couldn’t manage to take in (and keep in) what he needed. He was labeled failure to thrive and we knew he wasn’t going to be able to catch up on his own. My son had laryngomalacia (floppy airway), poor suck response, aspiration (formula was going into his lungs when he drank) and GERD (later to be diagnosed with more). We tried thickened formula, but he wasn’t able to coordinate breathing and eating at the same time.

One important thing to note is that the vast majority of infants and children who require tube feeding only need it temporarily. They need it to:

  • Outgrow a condition (e.g. reflux, aspiration)
  • Give them time to learn to suck, swallow properly
  • Gain weight to have a procedure
  • Find safe foods to eat

This certainly isn’t an exhaustive list, but the point is that feeding tubes do not have to be forever. This is something to keep in mind as you move through this “journey.”

There are several different types of feeding tubes. Which one you get depends on how the stomach is working and the expected duration of tube feeding (which can change as you learn more about your child’s medical needs).

Temporary Feeding Tubes

  • OG tube: Oral-gastric tube runs from the mouth to the stomach. Preemies may get this tube because an NG tube may compromise breathing. OG tubes are likely only to be used in the hospital setting.
  • NG Tube: Naso-gastric Tube runs from the nose to the stomach.
  • NJ Tube: Naso-jenunal Tube runs from the nose to the intestines. Used to bypass the stomach in cases where the stomach may not be emptying as it should.

NG and NJ tubes can be used at home. These tubes are for more temporary tube feeding. If a child will be tube fed for longer than a few months, it is often recommended that they move to a G tube. NG tubes can make reflux worse, which can lead to oral aversions. My son had an NG tube for 4.5 months and I really wished we would have moved to a G-tube sooner.

Longer-term Feeding Tubes

  • G Tube: Gastric Tube runs directly into the stomach. It requires a surgical procedure to insert the tube, but it is often more comfortable for the child in the long run.
  • GJ Tubes: Gastric-jejunal Tube has two ports – one in the stomach, the other runs to the intestines.

Research

I had never known anyone who had a feeding tube. I didn’t even realize it was an option for my son until it was our reality. But, you if you end up tube feeding your child; you join tens of thousands of other parents.

It may seem like a lot to learn, but it quickly becomes second nature.

Advice from Parents of Preemies

  • Be an advocate for your child.
  • To be proactive, rather than reactive.
  • Ask a lot of questions. Don’t let fear drive your decision making.
  • See a Pediatric Gastroenterologist, even if it is only for a consult.
  • Pediatricians are often do not know a lot about feeding tubes. Once you get a feeding tube, ask which doctor will handle the day-to-day care. Often, it is a GI, but in some cases it could be the surgeon.
  • Seek out feeding therapy early on. Nearly all tube fed children can benefit from feeding therapy. Tube fed children often develop oral aversions. Feeding therapy can help a child learn how to eat and overcome oral aversions.
  • Use a pacifier to encourage sucking during feedings.
  • Connect with other parents in your situation. A number of parents felt like the NICU didn’t prepare them for tube feeding at home.

Resources

  • Feeding Tube Awareness Foundation: FTA is geared towards parents of tube fed children. It has pragmatic information that parents need to know about day-to-day life with a tube fed child, including video tutorials. FTA also has a very active facebook page where questions are answered quickly by a number of experienced parents and caregivers.
  • The Oley Foundation: The Oley Foundation has forums on their webpage and a wealth of information about tube feeding, much of which is written by medical professionals.

Feeding Tube Awareness Foundation also holds an annual Feeding Tube Awareness Week which runs the 2nd week of February each year. The mission is to raise awareness of tube feeding as a life saving medical intervention. With awareness comes understanding, so that parents can get the support they need.

For more information, please go to Feeding Tube Awareness Foundation

 


 

 



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