Mosh Posh!

A mix of things that have happened... as we enter the most exciting time of the year

with a little one...

  Christmas concert at school.. this year, Grace "walked" in with her teacher ..rather than sit in the wagon & be in it the whole concert.. & she sat on her teacher's lap...

She actually signed some of the song.. "You better watch out".. :)

  Grace with Christmas at an event!

Seeing the Christmas Tree for the first time... she LOVES it this year!!

Pacella Tree!!

  just giving some love!

And after a Warm December day of shopping.. Grace gets to go to the swing!!

She absolutely LOVES the swing!!

Thanks for reading!!

Love,

pattie & gary, Grace & maxwell

Happy homecoming day!

It's been 4 years that Grace has been home from the NICU! 

125 days was a long time back then.. she came home at 6lbs 4oz..

of course as a Preemie Mom, you remember weights & dates like this one.. 

it sure was a CELEBRATION!!

I remember exactly what she was wearing.. this newborn "Rock Princess" dress..

it was a 4 hour drive home..(I drove!). with her pulse ox & 02.. I remember it was a nice drive home!

There she was!!

And today has been a great day.. it's been a great 4 years with Grace..

& as every day passes, she's getting stronger, more loveable & beautiful!

This week, finally, Grace started weekly feeding therapy.. it must be already working..

today she 'bit' & swallowed 3 veggie sticks.. with every swallow I applauded & gave

her a 'good job high five'.. she was so proud of herself too!!

It's working & all starting to come together..

  and here she is 4 years later...  telling her Mama to be quiet!

This week at her speech therapy..  sitting up like a big girl..

She has come soo far!! I think the Christmas Season is going to be tougher this year with the tree & lights..

she's already touching the tree!

Thanks for reading about us for 4 years!! 

couldn't do it without all of you.. 

'it takes a village'.. silent prayers are the best!

love,

pattie & gary, Grace & maxwell

World Prematurity Awareness Day!

It's World Prematurity Awareness Day...

Hard to believe Grace is 4 & thriving, when in the first 72 hours they were afraid we

were going to lose her too.. as a matter of fact, I remember it as if it was yesterday..we

had spoken to the hospital chaplain in much of a daze talking about a baptism & last rights..

Who were we? Why were making this decision only days after our babies were born..

it was suppossed to happen like this!

But it does.. fortunately, after a long road, we were able to take Grace home..

& she is thriving..truly Amazing!

But Maxwell went to a better resting place. 

1 in 8 babies are born prematurely, and alot of times there is no rhyme or reason!

I don't say it often enough..but I'v been in a group of MOMS that all have premature babies..

I've been able to meet a few of them through out '1 x year' get togethers..

They are the strongest moms I know.

And the children..just WOW!!

Wear purple today.. consider donating to your local March of Dimes..

we will do another individually wrapped snack drive for the moms in NICU in December..

It's our little "Bless you, Mom" in memory of Maxwell & in honor of Grace.

****************************************

I'm a crazy lady when it comes to moving furniture.. I have a small house, but I like

to move the furniture around all the time. So with a friend's help..we created a little nook for

Grace in her room with toys & books; and I moved the living room furniture around.

Grace LOVES it..She has more rolling room..and last night she was all over the place,

putting her claws up & making vocalizations.. as she was the tickle monster!

As the person playing with her..you're suppossed to roll to chase her..then tickle her..

which she then abrupts in laughter.. it's the cutest!!

She's Amazing.. Amazing Grace.

Love,

pattie & gary, Grace & Maxwell

November check-in.

Here's our monthly check-in.. Grace continues to make some great strides!

We had to do a Modified Barium Swallow Study last week (basically because the school 

are nervous nellies & weren't feeding her what we were sending in.. COMMUNICATION is key here!!)

Anyway, we didn't learn anything new..other than she is cleared of 

thin liquids & eating purees & some solids.

The problem isn't the food or water, but that she needs someone to guide her & remind

her "SIP-DOWN".. the way Gary & I and her feeding clinic person does it..

Grace is a very independant 4 year old!!

Well today, Veterans Day.. Thank you to the Brave for serving our country in the past & present!!

We think about those overseas that continue to keep America safe!

Grace went to a birthday party for a friend from school on Sunday (the only girl from his class that went)

at the local roller skating rink & it was her first time there.. so first time on a scooter & roller skates!!

She did AWESOME.. and absolutely loved it!!

She loved the loud music, seeing her friends..and was laughing the whole time..

(& it was clearly a work out for Mom & Dad!!)

 I think someone might be asking Santa for these kinds of roller skates for Christmas!! And the roller skating rink is about a 1/2 mile from our house..

I see this new adventure in our immediate future!!

I hope you can see this 2nd video..if not, let me know & I'll try again!

It was definitely a PROUD mom & dad moment!!

And onto just one more proud moment.. Grace has reached the 50% percentile on her growth chart..

she is 33 lbs 36.5" tall.. even while wheaning her gtube.. 

she's gaining weight, her belly/gtube area looks good..

stronger every day!

Thanks for reading & keeping up with our family!

Grace is deifnitely an inspiration!

love,

pattie & gary, Grace & maxwell

Rocky!

From Rocky.. "Getting stronger!!"

Grace is doing amazing!!! Her strength is amazing.. 

she is doing wonderful in school and with the help of her teacher & therapist, she's

getting stronger!!

This week at PT, Grace rode her tricycle (by herself!!)  I will upload it

for you today!  It's worth watching... We are so proud of her.

She can now walk with us holding each of her hands & she is asking

to go into the kitchen more frequently to open cabinets!! Yes, she likes to open cabinets

and see what's in them.

Yesterday, we had feeding therapy & she ate yogurt on a nuk brush.. a nuk brush

is an oral motor tool and we dunked the brush into the yogurt & she ate quite a bit..

this is going to be next week's snack for school. 

She has a barium swallow study coming up in the next few weeks..keep us

in your thoughts for that.. We're not sure we'll get alot of information..hopefully

she'll be in a good mood to swallow some liquid & maybe some yogurt.

She's getting big that is for sure!!

thanks for reading!

pattie & gary, Grace & maxwell

Fall. October 2015.

Hi.  It's been a month.. trying to get the computer to co-operate so I can add pictures,

WORK. FAMILY. LIFE. 

You know those things that might get in the way from me blogging!

But I figured if I updated monthly.. that wouldn't be so bad!

Grace is doing great in school.. just a virus last week had her out for a couple of days, but

some good friends & sitters stayed with her so we could work, a quick trip to the ER (long

night), and a few nebulizer treatments...and she's seems back to good!)

She's in pre-school all day now. 8:30 (with the bus) til 2:30..

she's doing alot more standing independently at school (still supported behind her),

trying to get better use of the walker..

feeding is 'ok'.. we're scheduling a barium swallow test within the next month..

g-tube is what it is.. we've weaned her a little to make her hungry & she's tasting

& eating alot more meltables..

Communication with the school seems better..

but had a meeting yesterday, and it would be nice just once to hear MORE positives in meetings

that anything else.  It makes me sad that Grace isn't up to her peers yet, but for what/where

she is .. I just have to be grateful (trust me I know that.. sometimes it's just hard!)

Her receptive language & social skills are definitely her age!

She's been called the 'little mayor' of her school, waving to all the kids as she passes them

by in her wagon.. (she uses a wagon for transporting from class to nurses office, etc).

Here's some pictures:

 With my Dad.. & NO she doesn't have a kitty!!

Her first birthday party for a friend..at Bay state gymnastics.. Momma got a workout too!

She is finally wearing 3T clothes.. 4T shirts.. what strides she has made in gaining weight..

in May '15 she went into the hospital at 24 lbs.  She is now a healthy

31 lbs, and about 38" tall.. 

Thanks for keeping up with her..

OCTOBER is baby infant loss awareness month..

we remember the 2 miscarriages we had prior to the twins

and of course MAXWELL..

the sad part is wondering what Grace & Max would be like

together!  She LOVES all her friends & school and her friends love to play

with her best.. I know they would've been great friends! Now he watches over her,

and no matter what anyone says.. it's NOT really for the best!

Love,

pattie & gary, Grace & maxwell

Back to School...

Grace started "full-day" preschool on Thursday..

she took the bus (again!) & did great.

Leaving at 8:20 a.m. & returned home around 2:45!!

Longggg day!  And Mama was a nervous wreck..

 

Here she is.. after a few takes.. & a special "Happy Birthday Mady" message on her sign!!

 

  "Mom, PLEASE stop taking my picture!"

We've really talked alot with the school, especially about 'carrying around'..NONE of that will

be happening..she can get around in this wagon and/or using her

walker (which the school is going to get one as well)!!

After that very long day at school, this is her first picture when she

arrived home!! Not so bad, ah??

She did not take a 'rest' or nap at school (she could've), nor did she nod off

in the bus.. but she did get home & sleep an hour & half.

Just have to get into a routine!!

 

 

 This was from today, Friday.. eating her

favorite froyo (done usually with our nanny, Auntie DiDi)..she loves orange sherbert!  I should've taken a picture of her shirt after the yogurt! good thing for Clorox!!

 

 

As much as I worried about her..she honestly did very well.

There are 3 kids in her class that I know the parents..& one of the children is the

great-granddaughter of our neighbor.. the Granddaughter introduced herself to us

at orientation..& wouldn't you know it..the note that came home today expressed

that Grace has been playing alot with the little girl!!!!!

Soo cool!!

 

My heart is filled with LOVE for this little angel..  #specialneedsmom! :)

 

 

 

thanks for reading!!

love,

pattie & gary, Grace & maxwell



Quick update..

Grace starts SCHOOL this week.. FULL-TIME!!

8:40 a.m. to 2:30 p.m.

We're a little nervous, but she's going to have a Great time..and learn alot..she

really is adaptable..and maybe just a little less nap time (she'll nap on a mat in school for about 30 min), she should do great!!  Her bus driver came by yesterday just to chart out

the route.. so far she'll be picked up around 8:10 a.m.

 

 

 

Grace has been to a new feeding clinic, twice already & it's going well..

big differences with Grace eating this past week, than the two weeks ago we saw

her last.. We've been reducing Grace's 'lunch' time gtube feed, to make her

more hungry for dinner time.. & she's doing great..tasting, licking & swallowing new foods!

Last weekend & this weekend, she ate from her own ice cream cone..

holding it & all!!  She's getting there!

 

 

I'll try & post some pictures soon.. (picasa is still acting weird with my uploads from my iphone!)

Arghhhh.. it's very frustrating!

 

 

 

Moment from the weekend:  When holding her baby, Grace says, "waaaaa" meaning

the baby is crying!! Sooooooo cute!!!

 

Thanks for reading!

love,

pattie & gary, Grace & maxwell

Mini weekend in NY.

A road trip to Lewiston, NY to visit the mother-in-law (MIL)..went well!

Grace is getting soo big.. she remembered & recognized MIL and had a fun time

walking around with her & sitting in her favorite chair.. just to tease her.

Even though she only sees her a few times a year, it was really fun to watch!

 

2015

2014

 

  our trip led us to the Bird Kingdom in Niagara Falls, Canada.. we saw beautiful birds..this is one of them!

at the buffalo zoo! Wonderful, big zoo.. if you're ever in Buffalo!



 

 

  And this gorilla was just laying down the whole time..as the other gorilla's, even an infant gorilla.. walked around getting their food.. This must be the dad! or mama.. tired!!

 

 

 

 

Good to see cousin Johnny too!! We are back..  & Grace starts full day pre-school in 2 weeks!!

Let the worrying begin..

 

Thanks for reading!!

 

love,

pattie & gary, Grace & maxwell



4 years later..& still on our mind..& definitely in our hearts!

This one is for Maxwell Hathaway...

it was 4 years ago today that we held you, around this time of night

when you passed silently into the light.

 

You smiled & opened your eyes slightly at the mention of your name for Dada..

it was strange.. a professional photographer taking pictures of 'our family'..

as we held both Max & Grace together

and then asked us to 'smile'..how could we smile, knowing part of our family

was going to heaven..wayyyy too soon!

It was a very difficult night... and the next few days would prove

to be more difficult as well.

 

Time has passed.. our wounds have not healed properly..

I get exceptionally angry when I hear of a 'young teen mother' or of

woman or man who 'shakes' their baby because they were crying too much.

 

Daddy gets exceptionally angry at God..and wonders constantly, "Why us?"

 

I'm not sure either of us will ever be the same.

We are now different.

 

 

The ONE constant in all this is obviously: Grace.

She is our world.

She is our strength.

She has our hearts.

 

 

Rest in peace my dear little baby boy.. there's not a day that goes by that I wonder

about you, that I wonder what mischief you & Grace would be getting into.

Thank you Maxwell..for be Grace's angel..xo

 

 

 

 

 

 

In Memory of Maxwell, today we made a donation of 'snacks' to our local

(RI Ronald Mcdonald House)..for their house guests, as well

as for Hasbro's Ronald Mcdonald room for parents.

These snacks were donated by friends & family..in memory of Max

& being at the RI house today.. what a crazy memory it brought back for me..

I lost my breath for a few seconds as they were giving us a tour

as it took me back to the first day Gary & I got our tour of the Maine house..

It's nice to have a place so close to your child, but it's really hard too.

I say a prayer for those moms that are staying there tonight.

 

Grace.. donating for her brother!

 

 

 

 

 

Love you.. thanks for reading!

love,

pattie & gary & Grace & Maxwell



Grace's 4th Birthday!!

Our 'micro-preemie' turned 4 today!!

Wow.. she's come so far.. she's a friendly, outgoing, social little girl..

she LOVES to hold hands, loves fingernails that are painted, jewelry, and hugs!

She is very social at pre-school & has been attending a summer program

as well as finished her first year from last fall to this May.

In the fall of '15, she will be attending pre-school on a full day basis. 8:30-2:30!

That's going to be a big change for her..but she's a very adaptable child & I'm sure will do great!!

 

 

 

Grace weighs about 30 lbs.. end of August will be her 4 year check up, so

I'll update you then.

 

We are so happy at the progress she has made.. one day at a time!

We had a party on Saturday & here are some pictures.. Enjoy!

thanks for keeping up with her & us these past 4 years.. I've enjoyed writing this blog in her honor, and in Maxwell's memory.. there's not a day that goes by that we don't think of

what could've been... our heart is sad..but we know he is most definitely Grace's angel from above.

 

 

Grace did AWESOME this year in the bubble bounce..from rolling & moving her feet .. she was very active in it & loved being in there with her friends!!

 

Cake!!

  Like most kids, she loved the tissue paper the best!

 

Even got to play the drums!!

Friends from school.. the boy in the orange shirt is her BFF from school, and his brother

is the one she is touching his hair.. then she pulled him close & kissed his cheek!

Precious!!

All the kids that came!!

 

  A future pianoist, perhaps??

 

 

Grace is loved by so many! And she continues to touch people's lives.  She is

a lovable little girl!! Glad to call her mine!!

 

 

 

Thanks for reading....

love,

pattie & gary, Grace & maxwell



Preemie Mom & Kids weekend...

This past weekend, Grace & I went to our first 'annual' Moms & Kids weekend,

with 5 other moms & their preemies!!  I've talked about this group before..

the Preemie Pen Pals group started in 2011 for me, of course right after Grace

was born.  It's a Facebook group & the 50 or so women that are in the group have

all experienced Premature babies.  it's a wonderful group of women who are

supportive of each other & our kiddos. 

 

For the most part, none of us have met before.. but we have started these

GTG (get togethers) to get to know one another & have our kiddos

know each other too.  This year was Grace & I's first.

 

There were 4 sets of Twins, with a total of 10 kids altogether!

Our kids played with each other, talked to each other, read stories

together..and just had FUN!

 

 At the beach "lake".. Grace does not like the sand..nor the water :( unlike her mama..

Grace's personality shined through.. she loved the boys & tried holding this little guy's

hand the whole time.. :) (but most boys like their own personal space!)

All 10 kiddos!!

 

 

There are so many abilities within a disability.. my heart was full of love & awesomeness

as I got to finally put the face to the name of these beautiful children born 'too early'..

but Miracles just the same!!

 

 

 

Love you guys!

 

 

 

thanks for reading!

love,

pattie & gary, Grace & maxwell



Checking in...

It's been a busy Summer so far.. Grace is back in school for a month.

She goes Monday through Thursdays, 8:30-11:30 & is doing GREAT!

(There have been NO calls that she is 'rubbing' her belly.., hopefully it stays that way).

 

I think it's been 6 weeks post surgery & the whole May ordeal in the hospital..

we go back to surgeon tomorrow to check in.  Her skin looks good around the gtube

and she is gaining weight steadily.   She is up to about 30 lbs!!

(she was 24 lbs when she went in to the hospital in May)

 

She's still 'tasting' things...she should be starting a new feeding therapy

clinic in Fall River in a few weeks.  She's being a little definat these days, certainly

giving us a run for our $$ :)  but overall she is doing GREAT & is

HEALTHY & that's really what's important!!

 

 

A friend & fellow "Micro" Preemie mom wrote this wonderful story about

her preemie, Scarlett.. if you get a chance to read it.. please pick it up!

She is my hero.. I started to read it & am trying to find time nightly to continue..

 

The 'preemie mom' group that I've been involved in since 2011 is a wonderful group

of women with babies that were all born early.  It's been a wonderful group to really watch our

miracles grow up...and this weekend will be the first time that I will attend

the Northeast Get together with some of these women..

Grace & I will be traveling with a dear local preemie mom friend as we head

to the Poconos to meet these women & their children.. I will be sure to bring my camera!

 

 

A recent picture of our family..

 

  The Sagres ship sailing out of New Bedford harbor..

 

 

 

 

She's getting there!! 

 

 

Thanks for keeping up!

love,

pattie & gary, Grace & maxwell