Memory Lane

Feb. 6-12 is Feeding Tube Awareness Week. I plan to post as often as possible this week on different aspects of the subject. Won't you come along with me?

Feeding tubes... ...I remeber the first time I ever saw a feeding tube. I was working in a special needs preschool. A trailer module held two classrooms side by side and the neighboring teacher recieved a new student. A precious little girl, very involved, with a tubie. Poor teacher was having a hairy day anyhow, AND was new to the tubie...lunch time did not go well for her at all. As I recal there was milk about everywhere except in the childs tummy. I was impacted. I simply didn't know such a thing existed. It was hard to understand.
All those years later when I sat in a conference room across the hall from the NICU at the hospital and heard the doctor pronounce the word "gastrostomy tube...which is a feeding tube in her stomach", that memory came flooding back in vivid color. At least I knew how to picture what she was talking about because I had seen one once. Crazy the things that come to mind when one has really no idea what to think. No real experience to draw on that would give a clue as to what should be done, said or thought next in this given context.
I also remember bathing my precious baby for the very first time ever. I had missed out on the other baths. She was post-op and still very tender in the tubie area. Bathing a tiny newborn is enough of an "experience" when your not used to doing it. I felt like I was all thumbs. She screamed the entire time. I was relieved, exhausted and secretly sad when it was over. I'd fantisized before she was ever born about the romantic special time we could share at baths, with relaxing warm water and her happy little coos. I hadn't imagined side-stepping an akward "thing" sticking out of my daughters still swollen belly that shouldn't get wet, and the tube hanging from it that shouldn't get pulled while balancing a writhing, shreiking, slipery half-pint. At that time she was still "venting" from surgery, so it had to be up and open. I hadn't yet really wraped my head around the fact that we had this thing to deal with, let alone the mechanics of it.
When we were in the discharge process from the hospital, my utter ignorance hit me full force. I was on information overload and emotional overload. Suddenly I was painfully aware that my husband and I were on our own with this thing and surly there were many things we needed to know that we didn't about this tubie business. I remember through my haze asking the nurse to show me how to disconnect the extension tube from the g-tube. They had always left it in, but I was certain that I would eventually have to take it off. It was a new tube, and tight since it had never been disconnected. What would eventually become so second nature to me that I can literally do with my eyes closed (or in the dark), easily, simply and quickly, took consultation with three different people (I discovered that not just anybody knows how, even among the nursing staff), almost a half hour of frusteration and agony, and screams, screams and more screams from my daughter. By the time we finally got out of there I was simultaniously more relieved and rattled than I'd ever been in my life.
I was utterly unprepared for the questions and comments to come from the general public once we got home and on our own. But that just might be another post for another day. Please, come along with me on Feeding Tube Awareness Week. Take five minutes to google the subject or to read a little information at a link from my blog in the name of furthering your education. Knowledge is power and you just never know when it may help you, someone you love, or simply make you better equiped for next time you bump into me at the park giving my daughter her tube feeding.

Link of the day: The Oley Foundation