fiddledeedee32My son has had a G-tube since he was a month old. Prior to that, he had an NG tube. I would like to share our story and give you an idea of what life is like when you have a new Tubie to care for so you will not be left in the dark, like I was.
When he was born, he wasn’t gaining weight and the doctor’s couldn’t understand why. He would eat, but he wasn’t gaining weight. We tried breastfeeding, a few different formulas, he still wasn’t gaining any. When he reached a week old, he had lost weight and the doctors decided it would be best to send him to the children’s hospital. After running a couple of tests, they realized he was aspirating his food. Meaning he was breathing his food into his lungs instead of swallowing.
So, it was decided that the best thing for him would be an NG tube. (tube feeding through his nose.) I was taught and trained on how to do his feedings and even how to replace the tube if he pulled it out. (which he did a lot!) He would pull that tube out of his nose daily. Sometimes more than once. His poor little face was so irritated from all the tape being put on and then pulled off. Over and over again. Not to mention his little nose was getting extremely irritated.
Finally at his check up at the children’s hospital, they decided he would need to have a G-tube placed because he was going to need tube feedings indefinitely. I was horrified! They were going to put a hole into my baby’s stomach and then put a “button” in it. My poor baby.
After the surgery, they brought my little guy back in the room. They said it was ok for me to hold him. I opened his blanket and lifted his shirt, and saw his Mickey button for the first time. It was being held in with two metal pieces. There was gauze around it, which was bloody, and that freaked me out, but they assured me it was normal.
After a few days we went home. They had shown me how to feed him with the feeding pump and also with a bolus feed. They had shown me all I needed to know. Or, so I thought.
After we had gotten home, things seemed to be going pretty well. I had been feeding him with his feeding pump, changing the gauze around his button etc. Even though I was nervous, I was confident that I was doing everything right. And I was, as far as the nurses and doctors were concerned that had taught me “everything” I needed to know before he was discharged from the hospital.
Then we had been out running errands and when we had gotten home, he was so hungry. I didn’t want to hook him to the feeding pump because it was set to be distributed over a thirty minute period. So, I decided to go ahead and do the bolus feeding. Which, they showed me how. However, there were a few things they left out.
The bolus feed went too fast for his little stomach and he got more food than his stomach could handle. His stomach was so big. And he was crying so hard. I felt horrible. You know how it feels on Thanksgiving, you eat so much that you just have the worst tummy ache? This was worse. I was so upset for him to go through that. Why didn’t they warn me? I just had to hold him and try to soothe him. Finally it subsided and he fell asleep.
Oh my goodness, I will never forget that day, or the look on his little face. I cry to this day when I think about it. Over time I learned not to give him too much at once. And we got the hang of it. Once I got use to it, bolus feeds were very convenient. And actually, today, nineteen years later, we are still doing bolus feeds. Just bolus feeds as a matter of fact. We stopped using the feeding pump when he was about a year old.
Now I want to talk about taking care of the button and the button site. First, it’s really not hard. I just wish I would’ve been aware of a couple things. You keep the sight clean, I just used a bowl of warm water and baby soap to dip a cloth in, and gently wiped around it, and replaced the gauze. That was it. Easy peasy! Then came the day when my son’s in-home nurse wanted to check the button, which she took out to look at it and then replaced it.
That was a nightmare! Because, for one, I didn’t know she was going to take it out, and second, I didn’t expect the blood! She had told me she was going to check his button. Ok, so I went with her. She took the water out of the balloon, (which is how the button stays into place), and pulled the button out. If that wasn’t enough to scare the life out of me, it was bleeding, bad! I lost it. I was crying, asking her what the heck she was doing, and asking why my son was bleeding. I was shaking like a leaf. I just knew we were about to take a trip to the hospital.
She assured me that the bleeding was normal because it was a fresh wound. Still, I was so shaken up. She replaced the button and the gauze and all was fine. I picked him up and just cried. Not only did I just have a baby, I was dealing with postpartum depression, and it was still very fresh that my baby had abnormalities. Which we had no idea while I was pregnant. (I will touch on that in another post.) So, it was all just coming out.
My whole goal here, is to try and inform you as much as possible so you are a little more prepared than I was. It’ll save you a few surprises. Here are a few links about tube feedings that I wanted to share with you.
This first link is an excellent source! Check it out and bookmark it!
How-to’s & Education on Tube Feeding | Nestlé Health Science USA (nestlehealthscience.us)
Introduction to Home Tube Feeding – Bing video
Gastrostomy (G) Tubes – Feeding Tube Awareness Foundation
As always, please feel free to contact me with any questions. Comment and let myself and others know if you have any information to share as well. I look forward to hearing from you!
Until next time!
All my love,
Angela xoxo