Random Stuff.

Random pictures... taken lately..

Grace is still doing great!! She is just soo resiliant.. bounced right back!

 

 

 LOVE!!

 Learning how to put things in a container! She likes to take things out too..

  This is that "thing" we do.. Laugh!

And be Silly!!!

Eating our PEAS..of course!!

 

 

 

 

 

 

 

Love,

pattie & gary, Gracie & max



"You're both so lucky to have each other.."

That's what a woman/stranger said to me today at the UPS store..

and before that she said, "What a beautiful, happy, smiley baby.."

 

And I thought.."Yes, Ma'm..and if you knew where she was a week ago,

and that we almost lost her; or what she has been thru her life in the last two years.."

 

But then, sometimes that sounds like I'm being negative.. so I just said, "thank you"..

and AGREED with her..

Grace & I have a unique relationship already!!

Granted, I'm sure it's because she's got my personality..and

is as silly as I am!

 

 

We do this thing.. (I think Gary took a video, so I'll try to post tomorrow)

but we both laugh together, and she puts her hand over her nose & mouth,

then I follow suit.. as we laugh together..

 

She's starting to copy things I do, and vice versa!

She is such a joy!!

With everything she's been through.. God, she's such a happy baby!

I wish YOU all could meet her..

 

but I'm grateful you keep up with our story!!

 

 

 

 

A big Thanks to some friends of my Aunt Patty's..

a new book today in the mail for Grace (we've read it twice today)

&

a gift card to Babies R us..

just a few things to say "i'm thinking & praying for your family"..

it's receiving things like this, hearing those words from that woman today,

and a great conversation with my bank's vice president

that made me smile today!!

 

 

The extra SMILE came from my love bug!!

And the cannoli my husband got us for dessert!

 

 

 

 

Love,

pattie & gary, Gracie & max

A week late..

But a Happy Father's Day for a great Daddy!!

 

 

Started the day with snuggles in our bed with Grace..

can't believe it's been two weeks since we could snuggle with her..

These are the moments we live for:

 

Then out for breakfast & a quick visit to Vevo & Vevo..

 

 

A nice visit with Aunt Irene, who played with Grace..

and held her after her nap.

She's sleeping great since she's been home!

Thanks for visiting!! xo

 

Then a nice dinner for Father's Day..

We had grilled steaks, grilled corn, homemade potato salad (that Grace

loved!!), and a garden salad.  It was delicous.

 

A funny thing happened.. we had gotten a wooden umbrella to put

on our new deck table...well, it was so windy down here

this is what happened:

  It was pretty funny!! One gust of wind,

picked it up & threw it on the roof!! Hilarious!  Another gust, and it rolled off..

but it was broken :(

 

 

 

 

 

Ended the day with a great walk down the street to 'our' beach..

Grace loves the wind blowing in her face

 

 

 

 

 

 

 

 

 At the start of our walk..

Down at the beach...

Mama this is soo fun!!

 

 

 

 

G'night everyone! Time for na night!

 

 

Love,

pattie & gary, Gracie & maxwell

 

 



Discharged!

We got discharged early this afternoon..

Grace slept all night, mom & dad were there too..but I don't think

we slept good at all.. Grace can sleep thru anything! (really!!)

her feeding pump kept going off every hour, it's the kind of pump

that gets louder & louder until it gets shut off.

Every time it went off, we both woke up, Gary had to get up & open

the door, so the nurse would come in & shut it off.. it was very annoying!!

 

 

We are very happy to be home!!

 

  Here she is in her 'ride' as we were leaving the hospital..  She looks GREAT!  First order of business, washing that hair :)

I think she got an inch taller in two weeks.. now

that she's eating ALL her nutrients..she's going to grow taller & gain weight!!

 

We're going to hang at home for the weekend.. get some rest

& truly enjoy our little girl..

who is HOME safely & soundly..

 

 

 

Thanks for keeping in touch!

love,

pattie & gary, Grace & max



hotel hasbro still..

The hope is that we are going home tomorrow (friday)..

Just a side note, Grace came in weighing, 18 lbs. 5oz.; dropped to 17lbs. 12 oz..

and as of this morning weighs  18 lbs. 12 oz. 

& this is NOT even at her full feeding schedule!!

(which I'm happy about..she'll gain the weight safely, but on the same token,

geesh, if that original gtube wasn't leaking..)



Anyway, her gtube feeds are going okay..there is still some residual in
her belly..but they are going to give her something to help
push that down.. her surgeon was in this am..
there seems a pretty good plan in place..
we'll see how she does today with her feeds!

  This is from yesterday.. happy girl!!

 

 

Glad to be out of the crib..

 

 

 And before going to bed last night..she has all her 'biting' toys
here.. still teething a little..

 

She's as tired as the rest of us.. she's taking a long morning nap right now..

 

 

Thanks for thinking of us!

 

love,

pattie & gary, Grace & max

 

11th day!

We're still plugging away at Hasbro..

went in this am, after trying to sleep in a bit...

Grace was feisty & very happy to see me..

as a matter of fact, everytime I walked away from the crib..she started this fake cry!

Gary said she'd been doing it all night!

 

 

From her crib side, we call Vevo & Vevo

& Noni & Grandpa..

when they come on the phone..her eyes open wide & she's smiling

and trying to say 'hi'.. it's very cute!!

 

Last night she got to talk to her friend, Abby!! :)  A special treat for her!!

 

 

Today, her doctor came in and we talked to her about going up on feeds.

So starting with tonights feeds, they went to 45 ml's over an hour..

tomorrow they will close vent the tube for feeding; and maybe put it up another 15 ml's.

I'm hoping we can bring her home on Thursday.

(can't wait!!!)

 

 

Grace is off oxygen as well, as of this morning!

I got to hold her this afternoon, as we watched "Finding Nemo" for the 100th time! :)

 

 

Thanks for all the thoughts & prayers.

I'll be staying at the hospital tomorrow, as Gary comes home for shower & sleep.

 

 

Love,

pattie & gary, Grace & max

day 10 @ hotel hasbro

I'm tired.  Came home to get some rest, and had a working meeting tonight..

it ran 3 hours.. :(  so just got home at 10pm, and now trying to relax..

 

 

Grace has been moved back up to the 4th floor..

out of the PICU..

she is very feisty & doing really well.

They started her up on feeding tonight.

1 oz every 4 hours thru the gtube, so far nothing is backing up.

As soon as we can get her on full feeds, she can go home.

We are shooting for Thursday!

Grace is being weaned from her oxygen as well..

(i hope! i think they almost forgot they are supposed to be weaning her)

 

 

We are a little skeptical about being on the 4th floor,

but we don't need the services from the PICU..

therefore, I understand it and hopefully it's just a few days more!

 

 

 

Thanks for keeping up with us!

Love,

pattie & gary, Grace & max

 

 

p.s.  We will probably NOT be walking in this year's March for Babies

walk, because it is next Sunday.  But we are taking donations still, as we can

mail them in.  Please consider making a small donation here:

www.marchforbabies.org/maxlove

 

We'll be back next year.. stronger & better!!  Thank you for supporting us!