Feeding Tube Awareness: It takes a village

Monday, February 11, 2013

Monday’s topic: It takes a village: Tubie Resources and Support

What resources have helped you the most? How did you connect with others? How did it feel to find others who were going through the same thing? 

As if the NICU world wasn't isolating enough, in August 2011 we stepped out in raising a child with special needs, of some of those special needs....
A feeding tube, or g-tube in Alli's case.  
I had no one in my immediate line of friends or family who knew what we were dealing with at home.
5-10 weekly doctors appointments (an hour away)
4 hours of in home therapy
13 different medications
Round the clock breathing treatments  
1-2 liters of continuous oxygen support
Heart monitor and pulse oximeter
her g-tube.
Of all of Alli's needs the g-tube is probably the hardest for the outside world to understand. 
Breathing treatments, medications, oxygen, therapies, clinics, heart monitors & pulse ox.....
People get those needs.  She has crappy lungs.  They get it.  
But the g-tube, her feeding tube, and the fact that she takes nothing by mouth at 2 years old....
It's more than difficult to understand.  In fact it's impossible for some to understand. 
But through our NICU journey, I did make a few online friends who had walked this road before us with their kiddos.  They pointed me to online forums and message boards where I could connect, vent, ask questions, and share our experience with a community of others we get itThese online forums and message boards have even led me to where we are today in our goal to wean Alli from her g-tube.  
Liberating to say the least to be around folks who get it, even if they are online.  
And then last Friday night I finally got to me my first real life friend.  I swear I heard angels singing "Hallelujah." I know of a few others locally that have g-tubes, but this Mama fights an almost identical battle to our own.....
But hear this....
She has 3 year old twins who both of g-tubes. 
Um, yep, she's my hero.
Making connections are so important on this road.  Don't dare walk it alone. 
I tried. 
I failed. 
Thinking and believing that, there is no one else on this planet who can get this feeling. 
But they are there.  They're out there.  And more than likely they are willing and waiting to connect with you.  Honestly, tubie parents are quite possibly the most responsive to give help/advice of anyone I've met on this journey.  Possibly because we all know how hard information, resources, and understanding is to find.  It really does take a village.   

So go on look for your village.  Make those connections.  I'd be happy to point you in the direction of a few.  The village will keep you sane.  Knowing you're not alone in this journey is one of the best feelings there is to have.  And then meeting a real life friend who gets it....
For more info on Feeding Tube Awareness, click here!  

Alli's Homecoming pictures, 18 months ago.  The white strap is her heart monitor.  Just below is her g-tube, Mic-key button.




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