Feeding Tube Awareness: Part 1
With this week being dedicated to feeding tube awareness I wanted to share about our tubie story. This post will focus on our personal experience and Part 2 will answer some commonly asked questions.
Before I jump into it I just want to say if you found this blog because you have a child who may need a feeding tube I'm glad you are here! I know it sounds super scary but it’s going to be OK. You will catch on quickly and realized they are easy to use and quite literally life-savers.
Ok now back to it. Jadyn first needed a feeding tube when she was 10 months old. Long story short she stopped eating because it caused her so much pain. She was diagnosed with failure to thrive which we later learned was due to Crohn’s Disease. You can read more about the diagnosis here.
She started out with an NG tube which is one long tube that goes in through the nose, down the esophagus, and into the stomach. As you can imagine it made her gag a lot so she was constantly throwing up. This was so stressful, not even because I was always cleaning up puke but those calories were crucial for her growth. Also, the tubing would often break or she would rip it out. Jon or I would often have to insert a new one which was traumatic for all of us.
Once we realized this was going to be more of a long term thing we decided to switch to a G-tube. This involves a surgical procedure where they insert a device called a mickey button into her tummy. When it is time to feed her we attach the tube extension to the mickey button and the food goes straight into her stomach. I remember being so intimated by the thought of this. We stayed in the hospital for a couple days to make sure she healed well and got comfortable using the G-tube under the medical staff’s supervision. Now it is second nature and we can do it in our sleep. We have taught our parents, siblings, aunts and uncles, cousins, friends, teachers, and babysitters how to do it. We seriously have the most supportive community willing to step in and help.
For the most part she is a typical 5 year old. She goes to school full time and gets one feeding while she is there. She can keep up with her friends and loves playing with her little sister. We aren’t sure how long she will need a feeding tube. We take it one day at a time but I think that is the case for everyone. This journey has been both hard and beautiful. A painful lesson that I now cherish. It has stripped me of my preconceived notions of how I think things should be and strengthened my faith. I don’t see her as some growth chart statistic. I see her for who she is, Jadyn. My beautiful daughter who thanks to God and a feeding tube is now thriving.