Wednesday, August 29, 2012

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We are finally on that path we began to doubt we'd ever get to.  We are getting ready for the very real possibility of saying good-bye to Naomi's tubie.  Naomi has been tube dependent for greater than 50% of her nutrition for two and a half years and in less than three weeks we will start an inpatient feeding program at CHOC (Children's Hospital Orange County) that has the real likelihood of Naomi leaving with no g-tube feeds at all!  I am a huge bottle of nerves and emotions as we plan for this big metamorphosis in our lives.  I do a happy dance when I think about not having closets full of syringes, extensions, pump sets, surgical lube, button kits, and more.  I would love to have my laundry room for laundry instead of formula storage and it would be pretty cool to live in a house without an IV pole.  Then there are the nerves, can I make it through the program?  It won't all be fun and games.  Naomi is going to have to eat foods she currently refuses and eat at times that are close to impossible to get her to eat now.  I have to stick to the program and not cave when she has one of her first class fits.  And there is the ever present nagging feeling of what if I fail?  Although I've worked through the feelings of I failed at feeding her three years ago and that is why she has the tube, they still surface from time to time, and right now they seem front and center.  What if I fail again?  I know I have to trust Naomi and myself that this time will be different and this time she will eat, she will succeed and this time we will have amazing support to make it happen.

So the countdown begins...18 days until we fly out....19 days until we start the program.

4 comments:

  1. Praying for you guys. Oh man-the emotions I get just reading this and thinking of us possibly being there one day...it is so overwhelming and I just pray that the best will come from this.

    It had never crossed my mind that I would have a child that wouldn't eat, or that there even where children who wouldn't eat. It has been the hardest journey and I know all too well the worries you are having. Praying she responds well to the clinic. Praying they are able to give her the breakthrough she needs to say bye-bye to the tube. HUGS!!!! We didn't fail them. You didn't fail her. Praying super-mom powers for you!!!! Lean on us and we will support you while you are there and forever after!!! <3

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    1. Thank you Stephanie! I am excited and terrified in the same breath. Thank you for the prayers and encouragement, they mean a lot.

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  2. As I read this, I can feel my own rollercoaster of emotions. We have them, we try and work through them and sometimes push them aside to keep pushing forward for the sake of our kids. Big Hugs to you and your daughter. I pray that God gives you the strength to continue on and your daughter to achieve greatness within the program. :)

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    1. I am so hopeful, thank you for your prayers and words of encouragement.

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