Gtube issues...

Most parents of tubie babies have a love/hate relationship with their child's

tubie.. I have a HATE relationship!

It seems since day 1 of Grace's tube relationship it has been nothing but complicated!!

 

 

So we are back at Hotel Hasbro this weekend.. came in yesterday...

of course gtube issues.. the nurses recognize us on the 4th floor.. they love Grace!

It's nice to see familiar faces & let them see Grace who hasn't been here

in two years.. she's bigger to them.. and

"Wow, look at those curls!"

 

Our favorite, Social worker came in to visit today.. and was happy

to see us..but not! LOL.. she's a good egg & has had a baby herself since we

last saw her.. so that's kinda cool too!!

 

 

Grace's stoma (the hole which the gtube goes into) is really 'wide' and has the skin around the

gtube opening is a mess.. so they closed off the hole & put a "NJ" (tube that goes thru the nose, down the throat to the lower intestine of her body) & that's the way they've been feeding her.

 

Yesterday was the tough part, because radiology had to put the NJ in &

Grace was very upset!!  But today she is doing much better..back to being herself..

smiling & fidgiting.

 

  This was from Wednesday at doc's office! Big Girl!!

Today.. this is the NJ.. but she's smiling!!

And sitting like a big girl with her baby, Ally! (who she can say her name!! :)

 

 

 

We'll be in for the weekend.. hoping & praying the gtube sight just

clears up enough so we can put a button back in & it won't leak!!

Grace has been in so much pain for the last 4 weeks.. we just had complained

& kept giving her tylenol & motrin..

 

Grace is doing better with the tasting & eating..but it's not where it has to be..

she has to have the gtube, but we don't want her to be in pain 24x7..

 

especially since we are finally going on a TRUE FAMILY VACATION in

3 weeks.. a Boston to Bermuda Cruise!!!!!

(I see frozen pina colada's in my future!!)

 

 

 

Thanks for keeping up!

love,

pattie & gary, Grace & maxwell