We're Home!

Got discharged this morning.. in record time.. 9:30 a.m.! With the help of a great nurse!

Thanks, Kris!!

 

 

  eating a popsicle on Friday..

 

She loved this car!!

  Saturday morning Selfies..

 

And Smiley is HOME!!!

 

 

 

 

The gtube has a different tube..it's called a 'foley'.. for now.. we'll be able to put back

a regular mic button back on in a few weeks.. (maybe before our cruise, that's the hope anyway)..but if not, it's okay too..we want her belly to be healed 150%!!

 

It's been an exhausting day..but thanks to everyone who checked in with us & sent

well wishes..  we are happy to be home!!

 

Onward & back to school, PT, OT.. and going to start feeding therapy in June/July..

Grace is a superhero for sure!!

And it's only getting better!!

 

 

 

Love,

pattie & gary, Grace & maxwell



Mother's Day 2015 & a nice surprise..

I was a little melancholy as I drove to the hospital this morning..

I don't know.. just thinking of Grace & everything she has been through..

 

 

but today was a great day.. she looks awesome, her CBC (blood count) came

back great (no infection) and she was in very good spirits!

Had a great nap.. & then went for a 'ride' with us to dinner..

she absolutely loved it & was waving & talking to everybody!!

 

 

  Checking out the sites..

 

 

And then I got home to this on my porch...

  In bigger detail, it's Grace's handprints.. I couldn't figure out who dropped it off.. I thought maybe it was her pre-school teacher (since she missed the last few days of school)...but it was her wonderful NANNY!!  We are truly blessed to have her in Grace's life..   I absolutely LOVE it..   soo cute!!  Nothing like getting homemade gifts, now that she's in school...

 

 

We are hoping all goes well tomorrow & maybe Grace will be home Tuesday..

tomorrow afternoon would be nice too.. just not sure that's going to happen!

 

 

 

Thanks for reading!

love,

pattie & gary, Grace & maxwell



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



Grace's first medal!

Grace got a medal today..ok we all did..

& it couldn't had happened on a better day..Parent of Preemies Day.

 

 

The "Amazing Grace" team walked today for The Nemasket Group's 5k walk..

The Nemasket Group is a state funded organization that helps families, children,

and adults with disabilities.  It is an organization that I worked for upteen years ago..

and still have very close friends that work there.

 

It was MY first 5k in a few years, and although out of shape.. we did great.

As we strolled the streets of Fairhaven, Grace sat quietly in her stroller watching the children in front of us scootering around.  She had the occassional wave to people she saw as well.

 

Recently, Gary & I have been a bit discouraged on Grace's abilities..

she's not walking yet, she's not feeding/eating yet, she's not talking yet..

It's been discouraging & sometimes depressing..

 

but the word, "YET" keeps us going.. she is 3, and in a normal child world she should be doing all those things.. but YET, she IS signing at least 10 words or more, she IS taking steps

& standing upright with assistance & she IS drinking from a cup like a champ.

She has very important people in her life who love her dearly.. a wonderful nanny who spends anywhere between 12-19 hours a week with her.. & a "tia" who steps in for mommy to

take her to a friend's birthday party.

 

She is social, and loving.. and beautiful!

She has come a long way from 1 lb. 13 oz.

 

  she's looking at her medal!

 

And she has quite the personality.. I was trying to get her to look right at me so I could

get a good picture.. here he is looking right at me:

 

YET..., she's a Sassy girl!!!

 

 

 

 

This is from yesterday at her school friend's birthday party

at a local gymnastics place.she did great rolling around on the trampoline & jumping..

 

 

Parents of preemies is not a club we signed up for.. but it is a club

that we surrond ourselves with other parents who know what we are feeling at different times

and support each other!  Lucky for me, I have the support from a wonderful group of women (of about 50, but I've only met in person maybe 3-5).. we are on social media..and talk daily..

our troubles, our triumphants, and most of all our "Little-Ones"..

 

 

Happy Parents Preemie Day!!

 

 

Love,

pattie & gary, Grace & maxwell