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.