Dawn hadn't finished making it's debut when somewhere out of the ten pairs of eyes peering my way came the question.... "Are you okay with him going home with a NG tube?" This was a brand new place in life for me and I wasn't sure what to say, but then I heard the words "I will do whatever is best for Cohen", leave my mouth. The room became a sea of nodding heads and voices that murmured in agreement, "We feel this is necessary for your baby to thrive properly".
The next question that came through the crowd of white coats was, "Do you have any questions?" Do I have any questions???? I looked around the room and suddenly I had immense compassion for the zoo animals that find themselves gawked at through cages on a daily basis. Confusion raced through my mind... how did we end up at this place in life? I gave birth to a beautiful healthy baby boy and now somehow we are in a hospital room surrounded by well intended individuals that appear to have as much concern over my child's well being as I do. The long week in that small sterile room was beginning to take a toll on me and I was ready to get my family home.
|Just a boy and his pole!|
It was pitch black outside and quickly approaching midnight when the headlights finally pulled into my driveway. As I opened the door the man handed me a large bag of supplies and an I.V. pole then he disappeared as quickly as he came. I stood there in my living room staring at these foreign objects that were left in my care. I opened the bag and began to fumble through the instruction for putting together this vaguely familiar equipment. It resembled the hospital machines that I spent day after day with... but this was different, now I am the one responsible for these beeps and buzzes.
When I reflect back on all of those faces and the questions that they posed I realize now.... that in all of my educational experience there was nothing that had prepared me for this part of our journey. I have cared for the needs of four other little ones and thought that I had seen or experienced most everything.... until now.
I have been left to my own devices for figuring out this new way of feeding my sweet boy. Prior to leaving the hospital I was given a brief lesson on how to run the feeding pump but that was the extent of my tutorial on the matter. I am teaching myself as we go and much to my surprise there is more to it than I had imagined. I'm not sure what I thought it would be like... to be honest I couldn't see that far down the road at the time.
I am grateful for a wonderful on-line community of parents that are walking this very similar journey with us. It has been through their direction that I have been able to learn how to care for my child and his feeding tube. When we began this FPIES adventure I frequently saw the enduring term "tubies" used in reference to children with severe feeding issues, but there was a line of separation for me. Feeding tubes happened to other unfortunate children with FPIES and I rested comfortably knowing that this would never be a reality for our little guy (those things happen to other people). It was never on my child-rearing radar that I would find myself with the unique challenge of caring for my own little "tubie".
I am learning something new every day about properly caring for Cohen and his tube. With the help of some very experienced mothers I was able to learn a new way of taping his tube against his face. Cohen has been wearing his "no-no's" since he left the hospital, my little opportunist would seize every chance he could to rip that plastic nuisance off his face. Although, it broke my heart to keep him in those arm guards I knew that it was a necessity, the pain from ripping out his tube would be far greater than the discomfort of the restraints.
Last night was the first time in two weeks that my sweet little man was able to enjoy the freedom of sleeping without his "no-no"s"... his mama finally learned how to properly tape the NG tube so that he can't pull it out. My on-line research also opened my eyes to the possibility of allowing my little guy the ability to be mobile during his HOUR long feeds. His new back-pack arrived today in a highly anticipated, much-like-a-Christmas package shipment excitement (seriously there were shouts of fanfare as the truck pulled up and a greeting committee of four little package ushers). We are all a little excited at the opportunity for freedom that this gives our newly waddling toddler.
|Not quite digging the back pack yet!|
|Apparently someone has been watching his|
doctors and has learned a thing or two!
Finally, just as I am beginning to feel like I am getting a handle on all of this... the UPS shipments begin to roll in. Big Brown has been quite the frequent visitor at our home lately. Once again I am hit with a whole spectrum of emotions as the huge pile of supplies and equipment create a new realization for me.... turns out that we aren't exempt from this reality after all!
2 Corinthians 4:8-9 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.