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!

Smiles & Father's Day!

First, happy father's day to Gary..

A great Daddy.. he really participates in being a Dad, not just by name!

Thanks for all you do honey..sorry we are not celebrating at home

we'll make it up to you..

maybe by next weekend!!

 

 

 

This happened yesterday..

 

Here's that SMILE we all miss..

she was cheery & smiley..

& grabby with all her leads, trying to take them off..

 

Her surgeon & doc came into see her..and she was impressed

on how great she looks..

Today we start feeding a little pedialyte..

and maybe a discharge by Thursday.

 

 

Now that she's awake & coherent, we are staying here at Hasbro..

it makes for a very long day/night

but we are getting thru it!

 

 

Thanks for your warm wishes!!

 

 

Thanks for the pizza Uncle Johnny!

And sodas by Auntie Paula & Uncle Peter &  a nice visit too!!

 

 

 

 

Happy Father's Day to all the MOMS who are the Father's too!

Happy Father's Day to those dads who's children are heavenly angels!

Happy Father's Day to my Dad, Vevo!

 

 

 

Love,

pattie & gary, Gracie & max



Extabated! Day 8

The #8 has always been my "number"..

Today has been a great day, thus far...

 

the best news is Grace is starting to feel better..

she is Extabated!!

 

  Here she is just a little while ago, as I held her..

glad to be holding Mama's hand..and in my arms for sure! felt GREAT for both of us!!

She does have a little oxygen on.. just to help her out..

all meds have stopped.  She's on nutrition thru TPN, and probably will

start a little pedialyte thru gtube tomorrow.

 

We are expecting a couple of visitors today..

Auntie Paula & Uncle Peter..

and

Uncle Johnny & Cousin Andrew ..tonight.

 

 

Today is definitely a Good day..

let's keep it going!!

 

 

 

 

 

 

Thanks for the silent prayers & good thoughts!

 

Love,

pattie & gary, Grace & maxwell



Day 7. Hasbro Update

Grace is about the same.. they did stop the

paralyzing agent, so she can move around a little..

(her hands are restrained so she doesn't move around too much & pull anything out)..

This morning she went down to 1/2 down on the sedation medicine.

They had thought about extubating her today, but she still

has alot of secretions in her mouth, so they are waiting ..

maybe tomorrow.

 

 

Her eyes are more open today..

but sleeping/resting as well too!

We think she is trying to smile or move her mouth to talk,

but with the tube..it's hard.

 

She looks like a pin cushion..

BUT we've seen her gtube area & it has NEVER looked SOOO GOOD!!

(ever.. from the moment we got it in nov. 2011)

 

 

Thanks for all the prayers.

 

love,

pattie & gary, Grace & maxwell

Update.. Day 6 - Setback.

Setback.

Just one word..one period of 24 hours, actually maybe it was just

12 hours.. soo much can happen in a timeframe.

Grace has had a setback.

how much does a little girl have to go through in her life? Really???

 

They started feeds on her Tuesday evening..with a bolus of 4 oz at 6pm

and then starting at 10pm, they went continous of just over an ounce an hour.

Gary stayed with her, I went home for some rest & a meeting.

As the story has been told to me, around midnight Gary saw that her belly

was getting dissended (full, hard to the touch)..

he asked the nurse to call pedi surg, the nurse said well she's only get a lil over an

ounce & this is what they ordered.

Within an hour, Grace starting violently vommitting.

Her belly was too full!!

The picu team came up to try & eleviate the pressure..

she began dessating (her oxygen & heart rate started to drop).

I got called at 4 a.m., and then again at 5 a.m.

"You have to come now, she's very unpredicatably."

 

 

 

This was Tuesday evening..

 

What? Didn't I leave a smiling, happy baby that I held before I left?

She was watching TV with Mama.  We were listening to our songs. 

What in the hell happened??

 

I'm sad we are going thru this, yet AGAIN!

It's a repeat of April 2012.

 

 

Thankfully, her heart rate & oxygen stabalized.

She is in the PICU and on a ventiliator.

She is medically paralyzed & sedated (so she won't move & is comfortable)

She had to get a central line in her neck for all the connections for

the antibiotics, and the medicines.

She is on her belly, so to help her lungs clear out.

They initially thought an infection, maybe a belly leak from the new

g-tube, maybe an intestine blockage..

after 12 hours, they're saying maybe just aspirated pneumonia..

because she was coughing so much formula up, some got into her lungs.

I won't post a picture of what she looks like now, but you've just

gotten a description... you can imagine.

 

 

I had my prayer warriors out yesterday.. full of prayer!

They say prayer is so powerful..

We almost lost our baby.. (again!).. I'm not sure my faith can withhold

this.. I'll stick to the positive thoughts for Grace... and leave the praying

to the faithful and warriors.

 

 

 

What was suppossed to be preparation for taking her home

for the weekend, is now a setback.. and who knows when she's coming home.

 

 

I'm sad.  I'm bitter.

And I don't get it!

 

 

 

 

 

Thanks for keeping up..especially during this time.

Love,

pattie & gary, Grace & Max

day 4. hasbro

Grace is doing great today!!

She finally had a poop, a few actually..without anything

but a suppository!

She has no tubes on..her NG & her oxygen has been

taking off...she does have a 'blow by', it's air coming out of a hose

that sits on her chest pointed toward her face..to give her a whiff here & there.

 

 

At 3, if she remains awake..we are going to try some pediasure..

by bottle first and then whatever she doesn't take we'll give her the

rest by her new g-tube.

 

Everyone is on the same page about her feeds...she'll get 4 per day

with a continous feed at night.  And whatever she doesn't get by mouth, she

will take via g-tube.

 

We're hoping if all goes well, she will be home by the end of the week!

 

Daddy will be staying overnight tonight.. Mommy has to work her meeting.

Now that Grace is perky, and awake, it'll be good to have

one of us here.

 

 

Thanks for the warm thoughts..

a special thanks to PPPers for Grace's balloons today!!

 

 

 

Love,

pattie & gary, Grace & max

 



Day 3.. new room.

It's day 3 at Hasbro.. Grace was pretty much groggy all

day...but she's only on paid meds "as needed"..

She hasn't done much smiling today, :(  breaks my heart..

since she is such a SMILEY baby!!

 

 

We did move out of the PICU though..so a step in the

right direction.  We are in the same exact room as we were a year

ago, April.  The nurse said to me, 'ooh familiarity"..I say, "anxiety"..

We are in a 'shared' room.. there is a little baby in the next bed..who

cries alot! I just feel bad, that I can't pick her up.

So, I talk to her.. lol..

 

The surgeon is very happy with her progress.

Tomorrow they'll give her something to help with her bowel

movements.. They aren't in here, poking & prodding much..

which is good.  She really just needs to rest & heal!!

 

We're assuming she'll probably be in til the end of the week..

hopefully no more!

 

 Thanks to Auntie Dalila for visiting!! :)

Thanks to everyone who's leaving messages, and

emailing..and texting!!

Love to our PPP friends!!

 

Love,

pattie & gary, Gracie & maxwell

Surgery Update.

Grace went into surgery this morning at 9:00 a.m.

It took a little longer than they expected, because the track of the old g-tube

was really scarred and the inside of the stomach was on the outside

of the hole of the belly.  The surgeon spoke to us about 11:30 a.m.,

and said she did very well.  They had to open her up a little larger to fix the

existing g-tube hole; and then they pulled it up & put another g-tube

hole in the middle of the belly.

 

Unfortunately, Grace also had a bowel obstruction from the

scar tissue wrapping around the bowel.

So they fixed that as well.. it was a good thing we decided to do this

surgery right away, for that could've lead to a deadly infection.

 

 

Grace has been resting all day in the PICU.

We can tell she is some pain, and is getting morphine & tylenol.

She is on a little bit of 02; and was able to get extubated right after the procedure.

We thank everyone for their thoughts & prayers.

 

We anticipate that she will be here in the

hospital for the next several

days. 

 

 

We want her to get back to smiling!! We miss that!!!

 

 

Thanks for all the love!

 

love,

pattie, gary, Gracie & Maxwell

A turn of events.........

Hey, everyone.. just a quick update..

Grace got severly dehydrated Thursday afternoon through Saturday..

she actually took 8 ouces by mouth on Saturday,

and then we noticed it all leaked out of the side of her g-tube.

(that gtube has been nothing but problems for my sweet girl)

The good news is we know now, when she's really hungry she'll take that much by bottle.  Which is a plus, but not how we wanted to find out..she was starving!

 

Anyway, she is now at Hasbro Hospital, being prepped this am for Surgery today!

We ask for your positive thoughts & prayers.

The surgeon is the 'best'.. my sister works with her all the time, and comes

highly recommendable!!

The surgeon will close her current gtube location,

and place another gtube at another site on the belly.

Then we will work extra hard in the next few months to get that out.

Unlike the one she has now, the new site will close on its own once she

doesn't need it anymore.

 

 

We are doing okay.. just a little nervous (as any parents would be)

Please keep us in mind today!

I'll update you all later.

 

Thank you!

love,

pattie & gary, Grace & Maxwell

Meeting & Greeting........

We had to go to the grocery store to pick up a few things for dinner

last night..and although I didn't really want to go.. I'm glad I went.

This car was parked in front of mine, this pretty lady came out

and started walking toward Grace & I..

honestly, I thought she was going to say she hit the front of our car..

but noo it was much better than that..

Thanks to Liz, who introduced herself to us!!

Liz & I started email chat months into our 4th IVF cycle way

back in 2011..(she is the cousin of someone I know)..

It was so nice to meet her.

She was such an inspiration & comfort to me when I had the twins,

and when I was in Maine.

Thanks for being there! And for always keeping up with Grace's progress!!!

 

 

 

  We've been putting Grace into the saucer lately, and as you can see from this picture..she is doing fantastic!! She's standing in it & playing with the buttons.. soo much better than she used to.  She's not throwing her

back or head about.  She is definitely getting stronger!!

 

 

 

And today, I had the pleasure of meeting my first cousins new baby girls..

Welcome Kendall & Morgan.

Identical twin baby girls.. Kendall is over 5 lbs. & Morgan is just over 4.

Both babies are doing well & at home with Mama & Dada.

 

 

 

Lots doing.. Grace & I are going to watch my niece perform in her

gymnastics routine tomorrow..

Missing music & maybe nap..but it's okay to have one 'off' day..

Saturday back to swim class with Daddy! She did so well last week

splashing & kicking!

 

 

 

 

Thanks to all , truly..who continue to read about Grace..

and then see us out & introduce yourselves!

With all the people that read our blog, the blessings are tremendous!

 

 

Love,

pattie & gary, Gracie & Maxwell