February 11, 2014

I love a tubie!!

Feeding Tube Awareness Week
Sadie has had a feeding tube since day one of life.  The coordination of sucking, swallowing, and breathing just was not there when she was born (due to her pons being small).
We worked hard for 6 months learning to suck.
The most that she ever took from a bottle was an ounce (and that was only one time).
The chance of her getting aspiration pneumonia was extremely high.  I was tired of taking the risk every time I attempted to feed her.  Plus, she was getting too stressed and frustrated and so was I.
 We decided it was time to give Sadie a permanent feeding tube.  It was a laproscopic surgery that left her with 4 teeny, tiny little scars (that you can not even see now) and an "extra belly button" (as my other girls call it). We stayed in the hospital for a few days to make sure she could tolerate her food.  She did fantastic!  It was one of the best things that we have ever done for her.  We took away the stress of feeding and gaining weight.  We could now see her whole, beautiful face without a tube taped across her upper lip.
We now have a nutritionally, healthy little girl who is growing and gaining weight.  She has a g-tube button that is so discrete, no one knows that it is there and we can decorate it with cute little g tube covers to make her fashionable.  This tube has kept her out of the hospital many times as we can still give her fluids and keep her hydrated when she isn't feeling well.  This is Sadie's life line.  Without it, she would not be alive. 
Chloe and Aubrie have always embraced the feeding tube. Chloe (at 4 yrs old) made a feeding tube from construction paper and tape and attached it to a doll.  She wanted Sadie to have a doll that looked like her.  Aubrie wanted a teddy bear that had a feeding tube "just like my sister".
This is a video that the Feeding Tube Awareness group put together.  Watch it, share it, spread the word.

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