Hand to Hold's Official Blog: Written by Parents for Parents

Deciding On a G-Tube For Your Preemie

G button

G button when it isn’t hooked up to the tube for feeding.

G tubes. They didn’t exist 50 years ago. Think of all the babies they’ve helped go from failure to thrive to thriving. That’s the case for my son. It was a difficult decision to make but I’m glad we did.

My second child was born with severe special needs. One of the many symptoms of his particular syndrome is difficulty eating. He had a good strong suck but simply could not manage the complex process of suck, swallow, breathe required for babies to either nurse or take a bottle. He simply was not able to eat without aspirating.

“Let’s give him more time to develop.”

That became the common phrase for neonatologists, feeding therapists, lactation consultants, and other professionals who came to his bedside. It was even the answer to my repeated question of “How long?”

Even though everyone said, “We just need to give him more time.” I realized early on that my baby would either go home with an NG (Naso Gastric) tube or a G (Gastric) tube, but I was slow to accept it. I kept thinking there must be another way to get him to eat. A mother’s instinct is to feed her baby. I loved the days certain nurses were working because they would be more aggressive in trying to get him to take a bottle. But soon we got a big sign on our patient care board that said, “NPO. Oral feeds only with SLP.” Translate: Don’t you dare even try to feed that baby!

The experts were panic stricken that he would develop eating aversions. We couldn’t push him too hard. The only thing we could do was sit and wait for him to develop. We did. And we were still in the NICU. Nurses began giving us information on the different feeding options available to him post-NICU.

The NG tube felt too intimidating. What if we put it down his nose the wrong way and it fed his lungs instead of his tummy? What if he pulled it out and was too feisty to let us put it back in?

The G-tube felt too permanent. It required a surgery for a device that would artificially get food into his stomach. Was I already giving up on teaching him to feed? Was I taking the easy way out? And would this decision have long-term consequences of taking away his chances of orally feeding. Plus, it meant letting go of my dream of nursing my baby.

Finally our neonatologist came into our NICU room, pulled up a chair, and settled in for a nice long talk about the G tube. My husband was much more ready than I was. Everyone was waiting on me.

I defensively told him, “I know you want me to agree to this.”

He said, “You’re right I do. Not only as a doctor, but as a parent. My child has a G-tube.”

Now he had my attention.

“Just like nearly every parent I’ve worked with, after it was put in I said, ‘Why didn’t I do this sooner?’”

We talked through some of the pros and cons. Shortly after that conversation I finally decided that it was time. We needed to make a plan to take this baby home.

Pros of a G Tube

  • Provides a safe way of eating without aspirating.
  • Eliminates stress of whether or not your baby is getting enough calories.
  • Does not limit activities such as: tummy time, rolling, sitting, climbing, or even swimming.
  • Discrete placement on the stomach where a stranger wouldn’t even know your child is tube fed.
  • No surgery is required to close up the stoma.
  • Can be temporary.
  • May be possible to leave the NICU sooner.

Cons of a G Tube

  • Invasive surgical procedure.
  • Requires lots of equipment and is not especially convenient to feed in public.
  • May become an excuse for not working on oral feeds.

Do I have regrets? No. Not about the G-tube itself. It needed to happen and we made the right decision for our family. The right decision is different for everyone. It really is amazing that anything can become “normal” if you do it long enough.

Feeding in Progress

Feeding in progress with extension tubing connected to the button.

I’ve come to realize that there is a nurturing component to feeding that just may be as significant, or more, than the nutrition itself. When you feed your baby you also hold your baby, rock your baby, look in your baby’s eyes, sing and talk to your baby. In essence you are bonding with your child. The G tube doesn’t take that away from me. It’s been a long journey, but I’ve learned that even though I’m not the one feeding my baby calories, I am the one feeding my baby everything he needs to grow and develop.

For more information on tube feeding check out the Feeding Tube Awareness Foundation.

Kathy McClelland About Kathy McClelland

Kathy McClelland (TX) is mom to two beautiful boys and both spent an extended period of time in the NICU. Her first was a 34-week preemie. Early in her pregnancy she suffered two pulmonary emboli, which revealed two blood disorders. Then late pre-term she developed preeclampsia and HELLP Syndrome. Baby one weighed 4 lbs, 14 oz and was a feeder/grower spending three weeks in the NICU. Baby two was a surprise on multiple levels. Hoping to not repeat the NICU experience a second time, she delivered a 5 lb, 9 oz baby at 37 weeks. However, he was soon diagnosed with a rare syndrome and spent two months in two different NICUs. She writes about faith and finding beauty and hope on her personal blog.

Comments

  1. Kathy, we didn’t need G-tubes with our babies, but you answered so many questions I’ve always had about them. Thanks!

  2. Our son has a g-tube and I have 2 questions for you and your experience. Did you find your little one to be very gassy? Any advice? we are venting and using gas drops but he still has lots of air when we vent and passes gas at least 10 times a day if not more.

    2nd, have you noticed the mickey button pulling in tight then releasing. sometimes it may stay tight against the stomach for several minutes sometimes it might be really quick tightness then it will “pop” free and rotate and move as normal.

    Thanks,
    Kevin

    • Hi Kevin,

      1) Yes, lots of gas! We also used venting, gas drops, colic drops, but nothing really relieved his pressure well. I will say it’s gotten better as he’s gotten older. He recently turned one and we switched him to a toddler formula called Compleat and generally speaking it causes less gas and reflux.

      2) No, I haven’t noticed the tightening and releasing. Do you think it’s when he becomes distended because of gas that it gets tighter?

      Good luck on the gas issue. I know that’s no fun for anyone!

  3. Hello,
    Did your child have the Nissen also performed? If not did you notice his reflux to be worse after the g tube? Thanks

    • Hi Mike,

      No we did not have the Nissen performed. We felt strongly that we wanted him to be able to burp and vomit if he needed to. I did not notice the reflux get worse. Although he was and still is on reflux meds to keep it under control.

      It’s a hard decision. Our GI doctor told us that if he absolutely needed the Nissen, we could go back and do it later. For us it was the right choice not to but it’s different for everyone. I hope this helps.

      Kathy

  4. Donna Harris says:

    Thank you so much for sharing your story! We are considering the G tube for our son who has been in NICU since he was born at 30wks on Christmas. The feeding and tachypnea are the main things keeping him there. His doctor talked to us about it yesterday and we decided to go forward and see if he’s a candidate. I was also hesitant, but hearing other success stories help ease my discomfort!

    • Donna,

      I was very hesitant at first too, but I’m so glad we did it. It takes the stress out of feeding. My son is now eating by mouth but still has the g-tube for volume.

      I was encouraged to hear lots of stories where the g-tube came out after a short while. Sometimes our kids need to be in a safe, comfortable environment at home, rather than a hospital, in order to thrive. My very best to you and your baby!

      Kathy

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  1. […] over a PreemieBabies101 today with a post on G tubes. I realize I haven’t shared many of the specifics of N’s G […]

  2. […] time. We were only two weeks in and already getting pressure to start considering going home on a feeding tube. On top of that we were dealing what we later learned were the beginning stages of him going […]

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