5 months corrected. 8:57pm

Check this out.. This was taken on 10/30/11.. (Grace's due date):

 She's soo tiny!! HATE all that tape on her face.. but love that cute face!

We were working on getting her 'chubby' for her upcoming surgery.

Here she is today.. in her own Mamaroo at home:

According to our nurses scale she is 11 lbs. 3oz.

according to her pedi scale she is 10lbs. 7oz.

I don't know what to believe.. I'm thinking it's closer to the 10lbs 7oz..because

we are having such a difficult time with her g-tube.. it LEAKS

so much.. we have to wrap up her belly with a blanket & have lots

more of laundry, the blanket only stays dry if there is no feedings..

but of course, she has to eat every 3 hours.

Tomorrow we are off to see our GI doctor in Brockton.. a Saturday morning call

to help stop alot of this leakage... praying it works!!

After a sleepless night.. Daddy stayed up with her all night.. sadly, Gracie has not slept in 24 hours.  She is in her crib, as I type.. and hopefully she's remembering how to close her eyes. We feel bad for her.  Last night, she had peaked fevers.  103.8, and we were giving her motrin & tylenol, even a cool bath.  Nothing was working.  This 'parenting' thing can be very frustrating!

I got to sleep a few hours.  We tried everything.

After another high temp this morning, 103.7.. we took her back to the pediatrician (we were there yesterday too).. and found out today, she indeed has a bacterial infection.

Deep sigh!! I think it's really because of the gtube area.. soo our #1 goal is to get that cleared up.  We've been complaining about the leakage for months now.. I'm very upset it's still leaking & is red around.. it's not a contact dermatitis.. it's infected!!

I know being a parent, we will get frustrated sometimes.. but we have to be the best advocates for Gracie..because she really can't tell us what's wrong! I'm sad that it has taken us this long to really figure this out.  Sad even more, is how much of her medicine or feeds, is she really getting via the gtube if it's leaking soo much??!

On the good news of things.. Gracie is still taking a bottle a few times a day..

and with practice she has taken 8-18ml's daily.  We also tried sweet potatoe this week,

and I bought jarred bananas for her to try :).

Thanks for keeping us in your prayers.

We appreciate it!

I'll post tomorrow after our GI appointment!

Love,

pattie & gary, Gracie & max



Exhausting Day. 5:09pm

It's been an exhausting day! Grace didn't sleep much last night.. a few

hours at a time.. and then has been up since 6:45 a.m.!!

OMG!!  While we are greatful that she is probably developing near her corrected age of five months, and that's what babies do.. 'stay up all night'..

we took her to the pedi's office again today for a high fever!

Bloodwork was done & she just has a viral infection..

staying on the same course as last week.. finish all the antibiotics, motrin

& tylenol..

She just cries & cries..

and on the other hand, her gtube area is leaking soo much more than usual..

I'm sure she's so uncomfortable, tired & hungry (who knows how much of her

formula she is actually getting).

It's been a frustrating day as a MOM!!

We will be seeing the GI Doctor on Saturday in Brockton..

and he says he has all the stuff to help fix the problem. At this point we would go on any day.. we need to get this fixed.  Small leakage is expected..but going thru blankets

and clothes 5 or more times a day is ridiculous!!  And frustrating!!

Please keep Gracie in your prayers!!!

She's been thru soo much .. and I feel like we can't cut a break!

Thanks,

love,

pattie & gary, Gracie & max



Feeding. 9:38a.m.

Gracie is doing well with feeding.  She started purees last night..

her first is sweet potatoe.. here she is.. taking a small spoonful

 She definitely did better this morning with the sweet potatoe & oatmeal!

She's been doing great, still, with her bottle as well.. we're doing it slowly

but she takes anywhere from 6ml to 15ml daily!!

This is Gracie in her cute little skirt, the other

day..

Gracie's baptism is planned for April 22nd.

Then we are heading to North Conway for a weekend.. we are excited to get away for

a little while..

Thanks for keeping updated!

Love,

pattie & gary, Gracie & max



30 ml's!!!! 8:04pm

Happy Sunday!!

Grace is feeling better..

& she took 30 ml's by bottle today in 2 feedings... WOW!!

She's doing great with the bottle.

And she took 2 teaspoons of Oatmeal at her first feeding this morning,

and then took another 1 teaspoon at a lunch feeding!

We're allowed to give her vegetable & fruits..so we are starting

probably on Tuesday!  This is sooo exciting.  To think back to the 'feeding team' in Maine (& Sorry, but their 'negativity' on Grace's ability to feed).. and to see & watch

how far she's come with swallowing successfully & she has taken a little bit

of bottle every day since last Tuesday..she is doing GREAT!

Mommy & Daddy are soo proud!

Such a big girl!! Hopefully with the intake, she'll be gaining weight ..

because she's losing formula thru the g-tube..and the better she gets at the bottle,

the sooner the g-tube can come out!

(We are talking to her GI doctor about stopping the leakage!)

A good weekend was had.

A great, spontaneous lunch with a good friend yesterday..

then we had Vevo & Vevoo over for lunch today.

Lots of cleaning, vacuuming & shampooing the rugs..

and only 1 meltdown by me!

(it's not like I have them daily..but some days are meltdown days.. I think

I deserve at least once a week!)

Thanks for keeping up with Miss Grace.

She's the love of our lives!!

Love,

mom & dad, Gracie & maxwell



Feeling Better. 8:10pm

Grace is feeling better.  By bedtime tonight, her temparture was back down to a normal reading!! She has been a little lethargic today, but much better than yesterday.

She's been sleeping good & eating good..

and her bloodwork came back without any trace of bacterial infection..

so just a viral infection! As many of you, who are parents, that are reading.. it

just makes me sad to see her like that!!

Glad she's on the mend.

Here she was yesterday.. looking very pale..

Much better today..

here on right!!

Tomorrow should be much better, we hope!

Thanks for the thoughts & prayers.

This weekend is all about cleaning the house.. a really good clean!!

Enjoy your weekend!

Love,

pattie & gary, Gracie & max

Our 1st viral infection. 9:37a.m.

What started as a great road trip on Tuesday, ended with maybe a viral infection on Wednesday.  Grace & I went up to meet Auntie Tess, Ben & Emily at the Capron Park Zoo in Attleboro.  It was my first adventure out without a backseat driver. (Daddy usually sits in the back with Gracie).  We did good, except Gracie was exceptionally fussier than other days.. I thought maybe she was teething, or because her binky kept falling out on the way home & I couldn't keep stopping to put it back in. (I did pull over 4 times).  The zoo was nice..it's definitely a nice place to go with a better feeling baby.

There's lions, and very large turtles!

Kangaroo's & a very large duck pond!! With screaming lemurs!

Well.. by the time we got home (1pm), Gracie was very unconsolable.

Tuesday night, we took her temperature & she had a 101.2 fever.. the plan was to wait til the Wed morning to see her own pediatrician.  Well, Daddy slept on the couch Tuesday night, near Gracie in her RNP (rock n play).. and she didn't really sleep at all. :(  Which meant neither did we.

We ended up taking Grace to the ER Wednesday morning, because her pedi's office wasn't open til 8:30 & it was 7:20 she had a 102 fever.   We were there til 12:30.. and were just told to give her tylenol & motrin.  They did take blood, but we won't know if there's an infection til today.  They think it's just a viral infection.

Whatever it is, it stinks to see her crying and basically not herself.

Unfort, because she still had a high fever at 4pm, we also took her to her pediatrician yesterday.. (it was a veryy long day!)..He put her on antibiotics.

She slept better in her crib, last night.  She was able to take her oatmeal & 6ml's of formula this am..and she's sleeping again. 

Today is really going to be a rest day for Gracie & I.

I hope by end of the day today, she starts feeling better!

Thanks for thinking of us!!

And here's my cutie, from last night.. I knew there was a reason why I kept that hospital gown.. it actually is cute & helps to keep her itching hands off her g-tube!

Love you guys,

pattie & gary, Gracie & max

What beautiful weather!! 9:34pm

I hope you all got out & enjoyed some of the beautiful weather today.

What a blessing of warmth that has come early to us!!

I took Grace out to our porch this morning, not sure if she liked it..

she didn't even give me time to take a picture, before I brought her back in. :(

Grace did well with her oatmeal this morning & she took a whole teaspoon!!

Woo hoo!! Tonight she took, again 3/4 of a whole teaspoon.. but she was very fussy at dinner, so after expelling alot of gas (we actually have to vent her gtube)

she fell asleep.

Here she is in her big girl chair..waiting to get food this morning!!

Daddy was able to come home earlier today, and we took a ride to a local park in New Bedford & went for a nice walk in this great weather.

Gracie is doing so well with the feedings.

She's getting big.. soo cute!!

If she would only stop scratching the skin around her gtube area!!

Sooner than later she'll be off of it all together & this will just be a distant memory!

Thanks for keeping up with us!

Thursday is suppossed to be 80's inland & 70's on the coast (that's us!)

And I'll have the CAR!! YEA!!!!

Grace goes for her 2nd flu shot.. & maybe we'll do a walk around buttonwood park.

Thanks for keeping up!

Love,

pattie & gary, Gracie & maxwell



Still Feeding. 7:12pm

We just asked my brother in law (HI, Uncle Alan) to show Noni & Grandpa some recent pictures of Gracie thru the blog & I noticed, I hadn't updated since Wednesday.  Sorry.

Things are going well with the feeding.  I have switched Grace

to Oatmeal (vs. rice) as of Friday.  It's definitely a different texture, I'm not sure

if she loves it..yet! :)

Here's Gracie with her arm around her baby!! Awee.. :)

She's been taking about 5-7 ml's by bottle a day..

& then 1/2 - 1 tsp of Oatmeal. At two feedings.. if she's awake & alert

we try feeding..   Can't wait to get her weight tomorrow..

Busy weekend with parties & friends.

Gracie went to her first "thing 1 & thing 2" birthday party.  She slept thru the whole thing!

Then we had the Hooley's over for dinner Sat., night!

The Medeiros (our friends) over for Sunday lunch..brisket in the crockpot..my first

ever..it was really delish!

Now getting ready for a bath & bedtime!!

Thanks for keeping up to date!

Promise to do with more pictures this week!!

Love,

pattie & gary, Gracie & maxwell



Operation Feed - Day 2. 8:21pm

Operation Feed - Day 2:

1 tsp. Rice Cereal at breakfast with some cold formula (Tufts speech pathologist said that if the baby will tolerate cold, it'll help trigger a swallow.. Grace does well with it)

& 5 ml's of Formula via bottle!!

Then in the evening, (dinner), Grace had another 1 tsp. of rice cereal (Daddy gave it to her) & she took another 5ml's via bottle.

She seems to really like being fed by mouth..

we are going slowly..but it's working!! How exciting!!

And she's sitting in her new 'chair'.. vs. get a high chair, this chair sits on another chair..and reclines back, sits up straight, as she gets older it will grow with her.

Boy eating is tiring!!

On the oxygen side of things, she was on 1/4 (.250) today all day & yesterday I started to wean her down to 1/8 (.125).. she did great yesterday for an hour, and today she was on 1/8 for about 2.5 hours.. everyday is a little more.

Before we know it, she'll be off Oxygen & the g-tube!!

Boy, she really enjoys scratching the skin around the g-tube..poor thing must feel itchy.. we are trying to keep her hands off it, with gauze & tape.. sometimes it doesn't even help.

Gracie is doing soo well!! We are blessed!!

Grace was visited by Auntie Heather & the twins this morning!  Jack & Olivia are getting soo big..they will be 2 at the end of April.  Soo cute!!

Then, Auntie Paula stopped by with the boys.. to drop off some diapers she picked up for me.. that was huge; we were running out & she was making a BJ run..

If you have BJ's coupons & don't use them..on the Pampers.. please send them my way! Email me for my address!!

Daddy was home by 4pm & we took Gracie girl to Ft. Phoenix

for a walk on the dike.. it was very nice!!

Thank you Lord for giving us this day with our Grace.

Please I pray for every individual who takes the time to read about our journey,

and reads about our little Gracie!

She is doing so well, and it is by your Grace as well as each & every

thought & prayer that we get from the person who is reading this.

Please bless them in their own struggles & journey!

Amen!

Love you guys!

pattie & gary, Gracie & max

p.s. "HI" to Rose.. Thanks for reading!!



Big Day!! 7:01pm

After a 2 hour ride into Boston, parking in the wrong garage for $15.00, waiting in line in the place they originally told us to go to, then going to the other building that I thought we were suppossed to go.. we got GREAT NEWS:

NO ASPIRATING!!

Gracie did well on thickened formula, thin liquids & rice cereal by spoon!!

The Speech Pathologist, Kelly was wonderful with her!

When they were done, Grace had baby food all around her

 mouth and was licking her lips!

It was definitely a proud Mama & Dada moment, for sure!!

Thanks for all the thoughts & prayers.  They do work!!

And Thanks, Maxwell.. I know you are always with her!

Taking some brown rice cereal tonight at dinner time!

And taking her first bottle tonight.. just starting small..

Guess all those bibs will come in handy, now!!

We love you Gracie.. and so many of us are SOO PROUD OF YOU today!

(& always!)

Love you guys,

thanks for reading!

pattie & gary, Gracie & max



Swallow Test Tomorrow 9:23pm

Yes, I need to get to bed very soon.  Yes, I'm up watching

"The Bachelor".. how annoying!!

Tomorrow is Gracie's 'modified barium swallow test'.. PLEASE keep us

in your prayers.. I'm nervous.. but I know that Maxwell is with her & us,

and that he will be there for her tomorrow.

We are going to Tufts, and I have heard good things about them..

Just want everything to be okay, so we can start bottle feeding on a more

consistent basis!!

Thank you!

I'll update y'all tomorrow!

Love,

pattie & gary, Gracie & Max

Loving Pom Poms!! 11:48a.m.

Is it 10:48 or 11:48??

Hope you changed the clocks ahead.. the good thing is the extra hour of daylight at the end of the day!! And the warm weather that's forecasted for this week means an extra walk with Daddy at night!!  Gracie & I are going to start walking this week..rumor has it (Adele..love that song) it's suppossed to be warm..yea!!

I had gotten Gracie girl some tissue pom poms on Etsy.com

(if you haven't used this site, you don't know what you're missing.. it is full with talented, creative people who sell homemade items.. )

for Gracie's room..and finally with Auntie Heather's help yesterday to fluff them

(hey, it's not as easy as it sounds)

& I hung them up in her room with thin twine.. I LOVE THEM..

they look great.  Now, when we change Gracie she has some

beautiful colors to look up at!!

Here they are:

Don't you just love them??

With the time change, our house is moving very slowly this morning..

but it's Wonderful.. Gracie came to sleep in her rock n play at 3am

in our bedroom this morning.. then we all didn't wake up til 9:30a.m.

After some good cuddling with her, and blueberry waffles.. we really

have to get going on cleaning the kitchen & bathroom.

Love those fun chores, don't you??

We have a big night tonight.. We are going out with some friends for

some spirituality! I'll talk more about it tomorrow! Promise!

Have a good Sun-Day!

Love you guys..

Thanks for Reading

Gracie,

her mom & dad

& her brother!



Saturday Morning. 7:32a.m.

Good morning my faithful readers!!

Yesterday at Children's, went really well.  We are able to wean Gracie

from 1/4 on the oxygen to 1/8!! That's barely just a 'whiff'.

The pulmonalogist was pretty happy with the way her lungs sounded &

was confident that she'll be off oxygen by May/June!!

Now remember, she has only been on continous oxygen since her surgery in November.

So..she is doing really well!!

Because Daddy had taken the day off ..we were able to go to IKEA for a

bit.. that was great tooo..

Gracie was bright eyed & bushy tailed.. looking all around.

I got the 'poor baby' look from a woman who saw the oxygen tank & then looked at the baby.. I hate the 'poor baby' look or comment! Not all babies on oxygen are 'sick babies'..

Okay..off my soapbox!

The night before, she was awake alot during the night.. (I think it's because I wasn't home when she was off to sleep..maybe some seperation anxiety?)

But last night, she had a much better sleep.. with a nice bathtime, and then

off she went.  Bathtime might just have to be a nightly routine.

It's Saturday morning, and the troops are still sleeping..

Gracie does come into our bed in the early morning hours..

but today it wasn't til 6.. soo now she's having a nap with Daddy.

Then we are off.. going for our first breakfast out with the babe.

Then Vevo's for lunch.  Maybe a store or two thrown in there..

Happy Saturday everyone!!

Love,

pattie & gary, Gracie & Max

p.s. A special hello to Noni & Grandpa in Florida .. xoxo



Twins. 8:37pm

We had names picked out, even before we knew it was 1 or 2, boy or girl.

But it was one YEAR ago today, we found out we were having TWINS!

I remember when the technician told us she saw  "2 sacs", I was like "what?"

And then our doctor confirmed there were two!

We were so excited.  We couldn't even hold it in.. our first phone call on the way home was to my MIL (mother in law) who couldn't believe it either.

It was a very teary & memorable moment!!

Rest in peace our little boy.. Maxwell Hathaway, aka Twin "B"

We love you!! You'll always be remembered!  In our hearts forever!!

On the flip side, we went to GI today.. and he's excited that we are having Grace's barium swallow test next Tuesday .. (PLEASE keep us in your prayers)

Like any test, I am nervous.. although optimistic.. very nervous!!

Gracie & her Dad waiting for Dr. Hammo!

Gracie has on tights.. & her red & white valentine dress.

Thanks for reading!!

Love,

pattie & gary, Gracie & Maxwell (forever in our hearts!)

Tummy time. 6:54pm

Gracie & I are working on Grace's tummy time..here's a few pictures from today..

we are trying to do a few minutes every day.. tummy time helps with future crawling as well as builds neck & head muscles..

she's doing pretty well with it..

Here she is above on her tummy..

And she does pretty good putting her head to her left..

 And of course, below.. is how she feels after tummy time!!

This is Gracie's first time in the bumbo..

again..she did well with it.. she is getting alot stronger with her head muscles.

We are soo proud of her!!!

Uncle Ross stopped by for a brief visit.. he was proud too, how

big Gracie looks!!  Her eyes wide open she was looking at him.

Thanks for keeping updated!!

Love,

pattie & gary, Gracie & max



Pictures. 7:34pm

Happy Monday!!

We got some good pictures of Gracie today..

She got a few new pairs of "baby legs"..they are leg warmers for babies..

Here she is just hanging out..

Gracie had a great Monday..she slept her afternoon nap from 11-4, and then was on her back & then tummy time for a few minutes & she did very well.

Gracie's Noni & Grandpa are in Florida for a month..

then they are planning a trip up to see Gracie, as we prepare & plan for her

baptism in April.

We'll have a new weight tomorrow..

a GI appointment on Wednesday & then a Pulmonary appointment on Friday..

Next week is even busier.. whew!

I need to go to bed early!!

Love you guys..

enjoy the pictures of our cutie patutie :)

pattie & gary, Gracie & max



2 vs 7.. 7:03pm

Here's my little Gracie at 2 months old..

She was 3lbs. 5oz & 16.1" long..

Today on her 7th month birthday:

Miss Gracie is close to 12 lbs..at last weigh in this week she was 11 lbs. 7.5oz

& 22" long... WOW...

(her 1st pair of baby legs..blue elephants.. we love elephants & giraffes)

I had to research, by going back on the blog to find out her weight & length at 2 months.. and it brought a few tears to my eyes.. actually seeing all those pictures of little Gracie, and reading the ups &downs of the NICU..

Just wow!!!

Happy Birthday to Cora!! A preemie friend from Mommy's preemie board.. I'm soo glad I have connected with other preemie moms.. Cora was also born three months early, and she's doing wonderful!!  Congratulations Kristen & Carl!!

We're even meeting some of the preemie moms, dads & friends in late March..

I'm really looking forward to it!

I had a nice chat with Dalila today!

Some things I really need to just let go!!

I'm keeping a journal for Gracie.. I've been writing a journal since I was 13..

soo I know I'll keep it up for her..

Tonight is bath night.. we need to change her canular.. she is keeping daddy busy by pulling at it..every second! It's either that, or scratching her gtube area..

Sleeping good still & eating! We love her!!

Love you guys,

pattie & gary, Gracie & max



Pretty Bows in her hair. 9:10pm

Yesterday, we had visitors from Gracie's cousins, Ben & Emily!

I love watching them with her.. Ben consistently tells us that he loves Gracie; he tries to hug her & kiss her too.  Yesterday, she slept the whole time they were here..

well, she was awake when they first came in..wearing a cute outfit:

Ben & Emily thought she looked cute!!

Gracie pulled the bow/bandana off her head..

We also did a little tummy time.. we really need to work on building up her tummy

time..she needs to be awake & it will help strengthen her neck & head muscles..

She's looking to the side here..but the goal is to get her head to move up..

we'll work on it again this weekend!!

Gary & I also started infant massage yesterday.. & Gracie did GREAT!

She really enjoyed it, and was so relaxed..and didn't go to sleep!!

We will do it the next two weeks in a row..and try to make it part of her routine every other day, when she takes her bath.

Our baby is getting big.. she's come a long way..

We love her too!!

Love,

pattie & gary, Gracie & max