Lessons from a Feeding Tube

My oldest has had a feeding tube for almost four years. I remember my goal when she first got her tube was for it to be gone by her first birthday (she was three months old when she first got an NG-tube). It did not take long for us to realize that that was an unrealistic goal. Now our motto is that she will have it as long a she needs it. We have stopped making goals for when to get rid of her tube, and instead we celebrate everything that she is able to enjoy.

She gets to go to zoo class, have friends, play in the park, dance with her daddy, tell her sister stories, and be silly with mommy. Her tube makes this possible. She loves to help others and is very empathetic and has learned that empathy by going through many tough things in life. Before her tube, she puked all the time and was in so much pain. Her tube has given her the ability to grow and live and enjoy life.

So, while four years ago this time I was scared and overwhelmed (and I still am some days), it is different now. Tube feeding is not so new.

• I can fix her pump while doing 100 other things.
• I can flush her line and give medications.
• I can smell from across the room when her pump is leaking.
• I can fill her pump at 2 AM while only half awake.
• I can tape a tube like the best of them.
• I have taught a nurse or two a thing about feeding tubes.
• I can decorate her bag for fun events.
• I can speak tube language (NG, NJ, GJ, NPO, rate, mL, French size).
• I can share our experiences with others to help them.

All things I could not do four years ago when we were given less than 24 hours of tube training and sent home with a baby with an NG-tube. I remember not being sure how to hold, bathe, or dress her those first few days.

The past four years we have learned a lot. We have had to trust in God a lot and trust in other people. We have cried many tears and danced for joy.

It has been four crazy years, but best of all, we have gone through it all with Jillian. Her smile lights up my life. Her giggle makes me laugh. When she rubs my back as she gives me a hug I feel like it is all going to be all right.

She is a wonderful gift and I am thankful for her tube. I am thankful for the person who invented it. I am thankful for the company that makes it. I am thankful for all her doctors who take care of her. I am thankful for her therapists who work with her each week. I am thankful for the people who pray for us. I am thankful for the kind things that people have done. I am thankful for our friends who have held us while we cried and listened to us rant. I am thankful for each person along this journey.

It has not always been easy, and adding a second tubie to the mix this year made it even more interesting, but we are blessed and grateful.

Amanda is married to Brent and has two children, Jillian and Lydia. They are both still considered undiagnosed although it is thought that there is an underlying muscle issue with a maternal genetic inheritance as Amanda has many similar symptoms, just not as severe as the girls. They both have GJ-tubes and Jillian is on oxygen and has leg braces. They are the happiest kids, and they both love making people at our local children’s hospital smile. Jillian’s favorite things revolve around pink, purple, glitter, and tutus, and she is ok with all the medical stuff as long as she can make it girly. Lydia loves smiling and cuddling. They are a big Disney family and planning trips to the parks is their stress relief.

Amanda has a degree in early childhood education in both regular and special ed and taught 4K until Jillian was two years old, when she became a stay-at-home mom to help protect Jillian’s lungs from germs. They rely on their faith, friends, and family to get them through the hard aspects of being a medically complex family. Her blog can be found at brownandpinkpolkadots.blogspot.com.