Tubie Time 101

Feeding tubes are sometimes a necessity in order for a baby to survive! It doesn’t mean the child will be on it forever. It doesn’t mean you are a failure as a parent. It doesn’t mean that your child is lazy.  It means, for a variety of reasons, your child needs help getting nutrition. It can be scary and stressful at times, but you will find as a parent you do what is necessary for your child.

When we were told the only way to bring our child home sooner rather than later was to have a feeding tube put in, my emotions were all over the place.  Excited for the light at the end of the NICU tunnel, but worried and terrified for what that all truly meant. Before we knew it he was having surgery at two weeks old to insert his feeding tube.  Now, surgery on an infant is the scariest and most nerve-wracking thing to experience as a parent. Once it was finally his turn (at like 3 p.m.--so the poor guy didn’t have any food all day), the actual surgery only took an hour.  They originally told us they would come out and give us updates, but since it went so well and quick they didn’t. My mom and I were starting to panic that we hadn’t heard anything and we were about to talk to the liaison nurse, when the surgeon came out and told us everything went well.  Now I thought the waiting period was going to be the worst part, but they decided to leave him intubated overnight because of his smaller windpipe and seeing him on a ventilator was very difficult. It took all my power not to cry...I quickly kissed his little feet goodnight and rushed to the waiting room until my husband was ready to leave. Little A’s first g-tube was the long tube (the tube part stayed in the whole time and there was a plastic ring at the base on top of the skin) because our surgeon felt that was more stable.  The next day, the nurse showed me how to clean under it and care for the site. She also started to show me how to use the feeding bags and feeding pump. To jump ahead a week to the day before Little A was finally getting discharged from the NICU, I met with the representative from the feeding home therapy company (we were lucky to use CVS Coram at this point). Our representative brought a pump, the backpack, and a g-tube and walked me through each step to make sure I was comfortable using it. During this time I just thought about how thankful I was that the nurse had shown me step by step for a couple of days now too for extra practice.  The Coram Rep gave me her card, and told me in a few hours the local to home branch would be reaching out to me, so that 5 days worth of supplies would be delivered that night and then in a couple of days the rest of the supplies for the month. Everyone at Coram was nice and easy to deal with (not just on this first day, but throughout our time using them). That night, I watched a few youtube videos about the Kangaroo Joey Feeding Pump features and how to use it as well as about caring for the site of a g-tube. I wanted to make sure that I had all the information I needed. The next day I packed the feeding pump into its little backpack and was ready to go to the hospital to take home my baby.  Of course it was time for a feed when we were finally discharged. I even impressed the nurse with my easiness of using the pump and its backpack already. I was really in the mindset of I am going to do whatever it takes to bring my child home. It took about a week for my mom and husband to learn the ins and outs of the feeding pump and now we are all pros. I practically did it in my sleep for months.

I am unfortunately the only one who, besides changing the gauze around it each day, really cares for the g-tube.  I think my husband is too nervous about it. His anxiety of the g-tube became worse the day Little A got the g-tube button (which my mom describes as an air mattress valve). Let me step back a bit...in a follow up visit with the surgeon, we found out that he doesn’t have the g-tube buttons in his office like we thought he did.  He wrote us a script, sent it to Coram for us and told us to make an appointment when we have it. Well before I ever made it out of the city, I found out that the insurance doesn’t cover the cost of the button, so we found a cheaper medical supply company online to get it from instead. About a month later, we were ready to get Little A the g-tube Mic-Key button and not have the tube part always hanging out.  Little did I know walking into the doctor’s office that day, that I would be the one who has to put the g-tube in. Now it makes complete sense why they had me do it, so I would be able to change it in the future without having to go to them, but it was so scary. At this moment, I was so happy that I read the directions booklet that came with the g-tube just out of curiosity because it really helped me better understand the directions the doctor gave me.  She told me what to do, prepared the new g-tube button and took out the old one. My stomach was in knots, hands shaking, but I did it! Little A cried a bit, but we were assured that it didn’t hurt--well actually he screamed literally until we put him back in his carseat where he knew that nothing else was going to happen to him. We quickly got used to putting in and taking out the extension tubes. Not having the tube hanging out all the time made tummy time easier and the worry of it getting caught and yanked out subsided for me. My husband is still nervous that something will happen with the button and I constantly explain that it would have to be pulled really hard to come out.  

I have only had to change out the g-tube button once at home.  I hope it is the one and only time and that we can wean Little A off the tube completely before it has to be done again.  His first g-tube button lasted 4 months. They usually last about 4-6 months, which makes sense since we have lots of acid and juices in our stomachs.  When I realized I had to change it out, without the doctor’s supervision, I quickly became very anxious. I just knew that it wasn’t sitting on his stomach right anymore and there was a lot more blood and discharge than there had been. I put his changing pad on the kitchen table because it had the best lighting and then gathered everything I needed that I keep in his emergency kit.  I laid out some gauze, tested the balloon on the new g-tube to make sure there were no problems with it, then lubricated it and filled a syringe with 4 mL of water. With a shaky hand, I inserted an empty syringe and extracted the water in his current g-tube. I tried to pull it out, but was having trouble and this made me very nervous. I started to freak out and thought “why is it not coming out?” and then I quickly went to Google. I read it could be difficult and to just twist around and use a little bit more force. I took a deep breathe, thought about the first time I did this with the doctor’s help, and then it came out.  All of a sudden, I was just doing every step like it is my everyday job. I inserted the new g-tube, filled its balloon with water and put some new gauze around it. I did it and Little A was ready to be fed! So far we have survived 7 months of Little A’s life and 3 g-tubes.