Friday, September 20, 2013

Life With a NG Tube

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; persecuted, but not abandoned; struck down, but not destroyed.                                                                            
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  1. Bless his heart. He is so blessed to have you as his mama. The tender care you give him. Am continuing to pray for you and your family.

  2. I had a tubie for a bit, and am worried he'll be back on. I'm glad you got help with his tape and he can have the guards off! I love that scripture. My favorite right now is a bit later in the same book chapter 12 vs 7-10. Hang in there mama, lots of us fpies moms praying for you and sweet Cohen.

  3. Thank you so much LuAnn! I don't know where I would be without the prayers that have been offered up on our behalf. Jessie we are praying for you all as well. I hope you all are finding better help than you have had in the past.

  4. Carrie,

    Watching ( and reading too) your journey with each of your babies, gives me courage to know that again, everyday, we rise up and meet the challenges of the world to show it how good our God is. He is great and somewhere, someone is watching you face this trail (and your others) with dignity and grace and understanding that we truely can do all things through Christ who strengthens us! Praying for you daily, knowing that God is using you and your babies for his ministry! Love, Joy

  5. Carrie, as I agree w/the others you truly are an amazing Momma. Cohen is so blessed to have you and one day he will know all you've done for him, your perfect dedication as a mother to see her baby through this trial. I am blessed to share in Cohens' life and be able to see him at church. We pray daily for him, for you, for the family and I know one day God will remove all of Cohens' problems and he will be perfectly well.
    God Bless you and all then Bramblees today...<3

    1. Oh Joy I hope I live up to every word that you said. I am a work in progress and to be honest I don't know any other way but to lean on HIM to get us through. I don't know why but the devil is desperately attacking our little family but what I do know is that he will never win me. I am not one that would ever pray for trials to come my way but I do pray that God will use my life for His kingdom no matter whether I am standing in the darkness of the valley or basking in the sunshine on the mountain peek. You inspire me with your faith that you demonstrate through your journey as well. We have very special little ones... aren't we blessed to have been hand picked to help them through this life. Praying for you all too.

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  7. Thank you Esther your prayers have meant so much to me thank you for be a blessing to our family.

  8. Had tears reading your post. So sorry you have to go through this with your little one. So far, our Evan has not needed tube feeding. Not sure how we would survive it, I know only with lots of prayer. He hated the NG tube when he had it for two days for scopes 8 months ago, and pulled it out numerous times. Praying for you and Cohen! A hug, Corrie (Evan's mom -

    1. Thank you. It has been quite the journey but we learn to deal with things as they come. I hope your little one is doing well, we will keep you all in our prayers.


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