Saturday, February 07, 2015

Feeding Tube Awareness Week

It is the 5th annual Feeding Tube Awareness Week!  I haven't participated in Feeding Tube Awareness Week for a while....mostly because we are tube free and so I forget!  To check out posts from the 1st and 2nd annual awareness weeks click those links.  And if you want to see the post about removing Anna's tube click here.

 Well here she is...a vibrant and very healthy 5.5yr old.  She is in Kindergarten and learning to read.  She is full of life.  She loves her brother and sisters. 

She is full of spunk, but sweet and selfless.

She loves her dance class and her friends at Little Flowers.

I am here to tell all you mommas out there that there is life after the tubie.  After the diagnosis.  After the never ending doctor appointments.....and the accompanying bills.  Annabella is still a tiny pixie weighing in at 32lbs, but she is healthy.  She eats.  She thrives.

I just showed Anna a picture of her tummy with her tubie and she said, "ohhh I miss my tubie.."  When I asked her why she didn't really know.  But I think I understand.  For over two years her tubie defined her in a way and it sustained her.  There are things I miss about those times too.  And we certainly have more than one family joke about those days.  Now we laugh about pump beeping malfunctions in the middle of the night. 


Katherine T. Lauer said...

It is wonderful for you to comfort parents about post-tubie years. I have had at least two opportunities to try to calm parents who are very distressed about doctors wanting to give their babies g-tubes and I've cited your story (and another) of success.

Jamie Carin and Claudio Romano said...

Katherine, I am glad you are able to share our story! If you ever want to give someone my contact info please feel free to. Overall and overwhelmingly our experience with a feeding tube and being tube weaned has been excellent and we have no regrets about the medical decisions made for Anna.