Almost Dec. 1st.. 11:41pm

Hey there.. we are home..and finally done with billing (with just 8 minutes to spare)...

We are soo tired.. I was at the hospital at 7 a.m. this morning, and we had a good day with Gracie girl.  Poor baby has a hard time pooping.. any suggestions out there? Some of the nurses swear by prune juice, doesn't seem to work that well.. they do give her suppository's too.. geesh, she does not need my G.I. issues already!! (i know, TMI!)

Look at that cute face!!

We stopped by to see my niece and nephew on the way home.. my niece was expecting Daddy, so she was less than thrilled to see me.. broke my heart a little.. but then as soon as her brother got home & was hugging on me.. she couldn't stop giving me love.  So, I understand she was expecting someone else.. and we 'surprised' her.. maybe like her mom & doesn't like surprises.  LOL

We got home around 7:30pm..and honestly, there is SOOO much stuff to do at the house.. I can't believe it.  I have some good friends that have agreed to come by & help, as well as my mom will come by tomorrow & we'll go thru all the clothes, that people have dropped off.  And I have a very important lunch date tomorrow with Gracie's madrinha :) .. definitely looking forward to Not Your Average Joe's!!!!

We called in tonight to check on Grace & she's doing great.  The pulmonary specialist was in today around 4pm, and looked her off..they are leaving her oxygen at between 50-75cc's of air flow at 100%.. it's like getting an extra 'whiff'.. that's what she'll be going home at.  Just get her thru while she continues to grow & feel full with her feeds.

We found out our 'specialized' formula is going to cost $199.00/mo.. is that alot?? It sounds alot..but what do I know..

So, hopefully we'll be able to see a G.I. Specialist around here & get her on some more home formula in the next couple of months.  We already have our appointment set with our pediatrician for next week.  It's all coming together.

I had a nice chat with Dr. Morrow tonight.. she wished us well & gave us blessings for a great life with Gracie.. I will surely miss these people..I think I'm going to have a hard time with this 'good-bye' thing.. I am truly  myself when I'm up there..they have brought the best out in me!

Okay.. my head is nearly weighing me down.. I'm so tired.

G'night friends!

Love,

pattie & gary, Gracie & max

Pretty Girl Wednesday. 1:00pm

This is the 1st time I'm getting around to give you all an update.. guess it might even get slightly busier when we are home on MONDAY, right?? lol

This was Gracie at 7:00 a.m. today!

Grace is 120 days old!  3lbs. 3oz.

Grace is having a great day.  Sleeping restfully.  Gary & I will be leaving soon to head back to Fairhaven.  I started this at 1 & of course, someone came in to visit..Kathy Collins came to visit..she was my friend & chatterbox with me.. so I will surely miss her.

On my way in today, it was my last walk in.. 120 days! Wow.. I took my time, actually looked at the sights along the way.. looked at the big building in front of me,

Maine Medical Center & then said, "ba-bye".. :)

Here's Sweet Pea with Daddy.. soo cute!!

Here's my snowflakes of "Thanks" for the staff I made this morning!!
I'm sure I missed a couple of names.. soo I say in advance, "Thank you!"

My NICU family.. Thank you!!

Gotta go clean & move.. and organize, and bill.. :) arghh on the last one!!

Love,

pattie & gary, gracie & max

Tuesday with much to do! 12:37pm

Hey everyone.. soo thinks are moving along.  I have my lists up on the window, for all to see what needs to be done.  Wish some of these 'referrals' could've been made last week, as they knew we would be going home sometime.. and would most likely go home on O2.  Anyway, we are waiting for a pulmonary specialist to come & "assess" Grace's oxygen needs..so a prescription can get written & a monitor & O2 set up be delivered for us here.. to train on it.

Gracie is 6lbs. 3oz today!! 119 Days old.

She is growing like a weed.. here she is.. she is as long as she looks!! :)

So, the plan is that we may have to stay til Tuesday.. in the big scheme of things, what's another day, really??

We've got the 2 min training on the g-tube feeding.. really no big deal, I think a well trained monkey can do it!! Really, people..we can work every monitor, pump, thingy in the room.. I think we can handle the ones we have to take home.

Anyway, the plan is to leave tomorrow.. hopefully pulmonary will be in sometime today or tomorrow.. we'll leave accordingly & get back very early Sunday a.m.

I've done alot to ensure we have f/u appointments back home, but I do need to spend some time on "set-up" back home.. even if just a clean up..and unfort, being 2.5 hours from home isn't very convienent.  But we'll work it out!!

the car seat is in the room.. they need to do a 3 hour car seat angle test too!!

Okie dokie.. going back to RmcD house to eat lunch.  Last night was Olive Garden..yummy! So there should be some leftovers.. (i hope!)

Hope there's a good dinner tonight..

Love you guys,

pattie & gary, gracie & max

Good Meeting!! 8:20pm

Hi, everyone!! Our 4 o'clock meeting went GREAT!!  I presented, and did a 122 slideshow of pictures of Gracie & Max.. from August 3rd to now.. they loved it.  And we were out of the meeting by 4:45.. Everyone was very positive, and impressed how well run the meeting went, and efficiently.  We got all our questions answered, and some people (including us) have some work to do before Monday.. but Monday, should be no problem that we are going home!! :)   OMG.. we are coming home!!!! YEA!!

Gracie will go home on oxygen, but you know what..even if she has to have it thru the winter.. that's okay..at least she will be home!  I'm kinda nervous!! Scared too.. but I'm with her 12-15 hours a day up here..and have her routine down.. soo I'll be fine!

This is Dr. Peter Marro, Gracie's attending Neo natalogist..and he's such a 'cutie'.. he's been so nice to us & to Gracie & Max.

He's a special man for us & for Gracie!! Thanks, Dr. Marro!!

So, Gracie will get her 'mic' button from the surgeon on Friday..and we'll be training on the g-tube feeding pump tomorrow; the oxygen on Monday..

The plan is we'll go home Wednesday.. Gary needs to go back to work Thursday & Friday; my shower is Saturday evening..then we will be back Sunday a.m.

A whole new chapter will begin..

HOME!

Thanks for the support .. couldn't do it without YOU guys..

Love,

pattie & gary, gracie & max

SIX Pounds Monday. 10:22a.m.

Good morning, followers!!!   Gracie is 6 lbs. 0oz. today!! Yea!!

She is 118 days old, 4 weeks, 1 day corrected! :)

(new terminology)

Such an exciting time for us.. that she's 6lbs & that we are getting ready to take her home!  We feel blessed.  She is our little angel. Precious!

Last night, was "you're on your own" for dinner.  Which, I gotta tell you, "stinks!"

We got subway, so we could 1/2 last night & 1/2 today for lunch.. but even for us spending that extra few bucks this week.. is a hardship.  I'm not sure what people who aren't working, or have a family at the house do.  I think they should have petty cash available to get a few pizza's..or even sandwich meat.  There is a waiting list to cook at the RmCd house, they really need to plan the meals, even on weekends a little better.

  Rounds are coming in..gotta go.. chck in later.

love,

pattie, gary & gracie & max

Sunday Eve Follow up! 8:43pm

Hey, everyone. Happy Sunday evening!  We just got all our information typed up for tomorrow's meeting.. & I'm pretty excited!!  I forward the info to the doc who's on rounds tomorrow.. you know me, I'm ready!!

This is Ann, (Neo Nurse Practioner above) reading the ins/outs at rounds this morning.  Ann has been with Gracie since the beginning, and her & Gracie have a bonded relationship.. Grace is always sticking her tongue out when Ann is around... :).

And on left is Dr. Morrow, Kathy (a charge nurse) on right.. who helped us when Max was passing. 
All of the people up here..the staff, nurses, neo nnp's, doctors..have been sooo good to us.  Truly, they are doing their job, but they have become our Maine family as well.  And we Thank them!!

On Saturday, we did a one-on-one with Erica on the infant CPR doll..

There's Erica on the left, & Kristina (Gracie's nurse) & Gary doing his 30 chest compressions on the doll.. here's a close up of the infant doll:

LOL....

So, Gracie had a good day..15ml's with me this morning by bottle.. we try a bottle at every feeding if she's awake & seems interested or hungry.  She took 7ml's at 11, slept thru the 2 o'clock feeding & then another 8ml's at 5.. so we'll see how she does tonight at the 8 o'clock feeding...  She's getting soo big!! She's very alert now.

By the way, 30 ml's = 1oz.  So she takes 45ml's over 1 hour at feeds, 2 hours off & from 11pm-6am, she's at 25 ml's... doing great!!

I'll post tomorrow a.m. with pictures & weights & such..then again tomorrow night.. with big news I hope!! :)

Love you guys,

pattie & gary, gracie & max

Sunday Morning... 9:36a.m.

Good morning! I got up at 7, to be here for 7:30.. made it a little later, but was here for 1st feeding.  Gracie did great with the bottle last night, she took ALL 43cc's at the 8 o'clock feeding.. this morning, she took 15 with me.. she's doing great with the bottle feeds; especially if you think about it who would've guessed she would even take a bottle so quickly..she is 44 weeks gestationally today.  (Some term babies aren't even ready for a bottle when they're full term).  We truly have a miracle baby! Thank you, God!! :) Truly.

This is Gracie after her feeding.. she is pooped!! lol

Gracie is 117 days old; 44 weeks old gestationally

5lbs. 15oz!!!!! (one more oz to 6lbs)

We are so happy with her progress.. I think everyone here is just as impressed.

Tomorrow's the big meeting, I've been preparing for .. we got some answers from our health insurance rep yesterday.. soo it's just about getting the paperwork done &

talking about our little girl.. Please keep us in mind at 4:00pm tomorrow!

I'm sure it will go well!!  There are quite a few nurses & nnp's, and md's that are not actually working, but coming in for the meeting..and that makes me very happy.

Gracie has surely warmed alot of hearts here!!

These people WILL be missed!

But we are excited to be leaving!!!!!

Here's our sweet pea.. I love that hat!!

Okay.. rounds is almost in.. (i'll take a pic)

Love you guys,

pattie & gary, gracie & maxwell

Educated Saturday! 11:14am

Good morning!!  Daddy is doing alot of "1st's" today, and we are getting educated about different things.. I think the countdown will surely be on..soon enough!!

It's a very exciting feeling, but nervous as well...

Good morning, Momma & Dadda!

We got in at 9:00ish, and Gracie was wide awake & stayed awake for a few hours.  We were able to give her a bath around 10:30, and she was still bright eyed!  Daddy did alot of the washing, as it was his 1st bath..

Here he is washing her.. and then holding

her, here on the right.. she loved her

bath.. doesn't she look big??

She's doing soo great!! WE are

truly BLESSED!!

Another 1st, was Daddy got to give a bottle...

Awee.. he did well & she took 7cc's

So, I think this weekend is all about.. final education on what Gracie needs to go home.. us just learning everything else we need to know.

I've kinda been tearing up a little, just thinking about it.. 

Gracie is 116 days old today; 43w6days.. and she weighs

5lbs. 13oz.

At night she is on continous feed of 25ml's/hr. from 11-6.. (she was on 19)

God bless Gracie!!!

I'll post later update.. Thanks everyone for reading!!

Love,

pattie & gary, gracie & max

Wounded Iraqi girl to undergo procedure to cover bald spot | The Portland Press Herald / Maine Sunday Telegram

Wounded Iraqi girl to undergo procedure to cover bald spot The Portland Press Herald / Maine Sunday Telegram

Friday ending.. 11:05pm

Hey there.. spent some time downstairs tonight..watching "elf on the shelf"..and then CSI NY & Blue Bloods.. it was actually nice to be downstairs & watch TV on nice leather couches, kinda felt like being home.. (i dont have leather couches), but it was nice to be in the 'tv' room for awhile.

This afternoon, I left Daddy with Gracie for a couple of hours as I came back & cleaned our room & did some laundry.  Went back for the 5 o'clock feeding, and Daddy still was holding on to Gracie.. soo cute!   With the help of Andrea, I got some tips to better help her suck on the bottle & she took 20cc's with me.. yeaa!! She did great today.  20 cc's with her 1st feeding, 23cc's with 2nd & then 20 with me at 5.. Great girlie!!

I took a picture of her today looking up at her mobile (it's a black & red & white cubes, and has pictures of Daddy & Mommy in them).. she stares at them alot.. soo cute!!

Hi, Mommy!!

So cute.. nurses are saying she looks like Momma!! :)

When out shopping this am.. I saw this street sign..

and had to stop & take a picture..it says "Abigail Way".. I'm sure my #1 follower, Abigail Hooley, will love seeing it :) :).  Trishie & Gar miss you!! Gracie too!

Okay, gotta get up for 7:00 tomorrow...want to get to see Grace for the 8 o'clock feeding.  Tonight was leftover turkey for dinner, we made sandwiches & they were good!

There's an interesting person here at the RmcD house.. I was talking to this foreign man in the kitchen tonight..I've seen him the last couple of days & said "hi" to he & his daughter.  Well, tonight he asked me if I was a volunteer, I said "no, i had a baby in the hospital", and "I've been here a long time".. he asked 'how long'.. I said, "almost 4 months"..he said not as long as I.  "The first time I was here a year, the 2nd..3 months, and now this time 9 weeks"

Wow.. I said, "God Bless you.. I guess I can't complain."

Well.. low & behold.. the story is.. he & his daughter are from Iraq.  In 2008, his daughter got hit by a bullet from an American sniper, and was in a coma..

I just posted the story .. please read & keep them in your prayers!! What an amazing little girl.. I will have to tell them I read their story!! Truly, God Bless them!!

Thanks everyone for reading!!

I try to stay true to my feelings with my posts, and not have to censor any of them.. these are the posts of my feelings & mine only.. with how I am handling all these experiences thrown at me... I think I'm doing pretty good!

A little "goofy" my husband says! It's okay to be 'goofy'..

Love you guys,

pattie & gary & gracie & max



Black Friday! 1:54pm

Shopping Black Friday Day.. We went to Lowe's to get our battery packs.. 30 AA batteries for $4.00.. even got 2 packages for Josh & Kelley..

 Good job, Ross.. I heard you got yours too!

Also, drove down to Target in Biddeford, ME for Gracie's Chicco KeyFit

car seat & stroller.. YEA! Not really on sale, but Mom & Dad paid for it (thanks!!)

It's grey with a trim of orange.. pretty!  Our black friday shopping is done!

Good afternoon, Mommy & Daddy!

Daddy & I had a good sleep in.. I really needed it! I'm feeling a little exhausted..  trying to get things done for the meeting on Monday, those are just thoughts & putting them on paper.. and just need to really rest!

Back to see Gracie..she's taking 20cc & 23cc's with the nurses of formula today.. she's doing really good with it.. we'll try again at 5:00pm.

I'm going back to the house to do laundry, and Daddy's going to stay with Gracie for a little while.

Gracie is 115 days old today; 43w5days.. and weighs 5lbs. 10oz.

(apparently, had a big poop last night.. so weight went down.. soo we're expecting a weight gain tonight!!)

Okay.. gotta go..

Have a good day!!

Love,

pattie & gary, Gracie & max



On to Black Friday... 9:50pm

Good eve! A nice Thanksgiving Day was had with Uncle Chip & Aunt Patty (Kelley's aunt & uncle).. and we had a very nice.  They were very welcoming & happy that we were there.  Thank you Uncle Chip & Aunt Patty!!

Here's Josh & Kelley and me & Gary at Thanksgiving Dinner!!

We were in the town of Wyndham & they had gotten about 9" of snow.. lots of snow everywhere..

Snow fallen trees in Wyndham.. beautiful picture taken by Gary while driving (i was driving..lol)

And of course our blessed miracle of the day:

In her Mamaroo.. We got back to the hospital around 4:30, and she was sleeping in the mamaroo.. she had a good day & had taken 20cc's by bottle with the nurse at one of her feedings.  She's doing so well.. Thank You God!!

These are the good sales I know about:

30 pk. AA Batteries, Lowe's -- $4.00

Belgian Waffle Maker, Target -- $25.00

2 piece waffle maker, Walmart -- $3.00

We are going out tomorrow to Target sometime to get Gracie's infant car seat & stroller, travel system.. soo we'll check what's around.. but this year, not really going out "black friday shopping" at 3:00 a.m., like we usually do!  We are getting run down a litte, and really need to get our sleep.. there's always cyber monday!

(I really don't like shopping..really!)

Hope you all had a blessed Thankgiving.  It's the time for many miracles & a merry Holiday season!

Eat much. Love more!

Love,

pattie, gary & gracie & maxwell

Happy Thanksgiving!! 11:15a.m.

Happy Thanksgiving from us to YOU!  We have a lot to be thankful for..every year, but especially this year!!

Happy Thanksgiving!!

Grace is 114 days old!  5lbs. 13oz!!

We are especially Thankful for how well she is doing! For all the neonataologists at MMC & the neo nurse practioners, and all the nurses.. the "village" who has been taking care of her for the past 114 days.

We are moving into a stage of independancy with her.. we are arriving early at the hospital & staying late .. as if we were home.  It's a different kind of tired.. before it was all emotional tiredness..now it's actually participating in her care & emotionally tiring.  But we are getting close, I just know it!!

We are thankful for our friends & family.. and all our readers to the blog! 

Thank You, Aunt Irene for keeping up & sending thoughts & prayers our way!!

Thankful for our friends, Josh & Kelley up here.. & for Buffy's sister, Pat who invited us to her house today for Thanksgiving dinner.  We are so grateful!

Gotta run... I'll most later..

Eat much. Love more!!

Love,

pattie & gary, Gracie & max

Cold & Windy update 6:29pm

Happy Thanksgiving Eve!! Long day.. I'm tired..so I'm putting a post out ..before I fall asleep.  Daddy is on his way back.. should get here by 8... just in time for bed, hope he knows we are up by 6:30.. it might be Thanksgiving, but the babe has to eat & the nurses have to be there..which means we have to be there.

Today was a good day.  I was able to feed Gracie a little bottle at the 8, 2 & 5 o'clock feeding.  I can tell that she's ready to eat, because she's a little cranky & she's licking the blankie.. LOL.. I was just staring at her for awhile today, she's so precious!! She truly is!!

It's cold & windy now.. went from mid 50's the other day, to low 30's tonight.. brrrr!!

Tonight is usually a big party going evening for most people.. please be safe!!

I read on facebook our local ER had a sad day with a death of a child or two, please keep their parents in your prayers this Thanksgiving!

We'll post our Thanksgiving picture tomorrow..(nothing exciting)

Stil working on our plans for discharge..

Be safe! Happy Thanksgiving Eve!

love,

pattie & gary, gracie & max

p.s. before i forget, it's pasta tonight for dinner!! And NO I'm not making that up!! Homemade mac & cheese & baked ziti..
then I'll be complaining about too many turkey leftovers!

Wintry Wednesday! 10:56a.m.

Good morning, from Portland.. It rained last night, so we woke up to lots of rain & got very wet walking to the hospital.  Within an hour of being in, (I was here at 6:50a.m.), it started to snow.. looks like a wet snow mix now!  Geesh.. I would like to see the white stuff from my own couch.. & not having to go out in it.

Gracie stayed the same with weight at 5lbs. 11oz.

She looks great this morning, and was resting when I came in; after apparently a big apnea spell.. :(.  She has to be clear of spells for at least 7 days before discharge, sooo.. as much as we are looking forward to leaving.. we want her to be safe as well.

She & I had a talking to.. and I said a little extra prayer to the man upstairs.  Hopefully it was just a fluke.. and she'll remember to breathe :) (that's needed, Gracie!!)

Good morning, Momma!!!

Got sidetracked.. for awhile, but now I'm back.

Margo is on today.. and we are going over stuff for meeting on Monday.

For those interested: Lowe's has a 30pack AA batteries for $4.00 on black friday.. good deal!! So, we may do a little black friday shopping, come on now, who's going to be at Lowe's?? lol

Gracie's sleeping now.. she started her continous feeds last night from 11pm to 6am, this means we won't have to get up in the middle of the night at home.  Every 3 hours during the day, and if she can take a bottle, she will ... all in due time!

Dr. Tom Reynolds, nerurologists came by today & went over her MRI.. looks good.  She does have some weakness in her right leg, that will need some extra PT.. maybe a brace in future, will all depend.  It was a good conference with him, very hopeful! She looks great. Both arms have good range of motion.  And we'll follow up with neurology in months to come back home.

Okay.. that's all folks.. I'm tired! :(

Love you all,

pattie & gary, gracie & max

Gotta get to bed! 11:00pm

Why am I still awake?? Yes, I have to get up at 6:00 tomorrow..to get to the hospital for 7:00ish.. my new routine!  I was very happy with myself today, as I took care of Gracie & all her stuff!  She's doing great!!

She's having her mama's GI issues with poopies.. :(  but hopefully, nothing a little prune juice can't help solve.  She'll get 5ml's every 12 hours (Q12).  Daddy just called to check on her & she had a small to moderate poop.. & was sleeping comfortably.

She's doing an amazing job holding her bink & really sucking on it.. all great things to remember as she continues to take a bottle.... a little practice & she'll be doing great.

This is the last time she can wear this preemie outfit.. She's starting to outgrow her preemie clothes..but she does have some newborn clothes, she'll be in those for a little while longer.  Look at her big, beautiful eyes!!  She is soo cute!!

Gracie has really touched the hearts of soo many lives already! She is destined for big things, I just know it!  Her contiued/discharge meeting is still planned for Monday at 4:00.. I am meeting with people & really getting it coordinated.  There's a few people who have Monday off, but are going to come back in for the meeting.  I'm happy they will. 

We have made many connections here..

Tonight, I went out to Reny's Department Store.. cool store.. with Josh & Kelley.. 

managed to grab just a few Christmas presents while I was there.  Then we went to "Boda" for dinner, for Thai food & it was delish.  

(last night was pasta for dinner & tonight was a chicken, broccoli & rice dish)

My mommy LOVES this hat!!

Must go to bed now!! Love to my friends RH & HH!!

As you get your Turkey dinner ready .. remember what you are truly Thankful for this season!! :)  Prayers for all of YOU..

Love,

pattie & gary, gracie & max 

Today's update & road trip! 3:11pm

Hi, everyone! Gracie just left for yes, another road trip.. this time down for a MRI on her head.. nothing to worry about, just a baseline for her records (as we are getting ready to get things in order to go home).

She sleeps like her Vevo with her mouth open..lol

I got here at 6:55a.m. with the morning shift & Gracie was still sleeping a little, then she was wide awake.  So, I got to see her first thing in the morning, bright eyed & bushy tailed.  She looked so beautiful! I gave her a bottle feed at 7:40ish a.m., and she took 5cc's.. every little counts.  Then she had a feeding thru her g-tube at 8:00a.m.; I got the feeds ready today and have done ALL the hands on stuff with her.  At her 11 a.m. feed, she took 10cc's by bottle and OT came in & was very impressed on how well she was doing with her sucking & taking the bottle.

Nighttime, who is now a day shift nurse, Kristina is her nurse today..

Okay, so I'm back & it's 3:46pm.. Kathy (coordinator of DISCHARGE planning) came by for a visit & update.. & we are shaking & grooving over here!!

Cindy, one of the neonatalogist nurse practioners, is on today & she has been very helpful in coordinating & faxing forms, etc. etc.  I jokingly said to her,

"I'm glad someone is taking me seriously, about leaving!!"

She laughed.  I really can't complain, MMC has been wonderful.. & I wouldn't be making suggestions to go home if it wasn't that Grace is doing soo GREAT!!

She may have to go home on oxygen for a little bit, but she's not getting that much..and I'd rather have it for peace of mind than not, we do have a 2.5 hour car ride home. And Gman.. I'm driving!!! :)

Here's my sweet pea again!! Chubby cheekers!!

 

Grace & I had a good day!  I'm back tomorrow for 7a.m.

I'm starting to use my black book (thanks, Dalila) for Gracie's stuff..

feeding schedules & things to do..  It's soo very exciting!!

 

Early intervention will be referred to Schwartz Center, in Dartmouth. Visiting nurses will be Southcoast.  Plans are definitely being made!!

 

 

A big HUG & THANK YOU to my MOM & DAD..who are paying for Gracie's travel system...infant car seat & stroller.. I'm going to go to Target to get the one I want hopefully on Friday.. I was going to order it online, but I wouldn't get it til end of next week.. and I need it 3-5 days prior to leaving! She has to take a car seat angle test for at least 90 minutes!!

 

 

She'll be back soon to her crib..and I need to be off the computer by then..

 

 

SO.. Thanks for reading! Thanks for the prayers!

 

Grace is 112 days old; 43w2days & 5lbs. 11oz!!

 

 

Love you guys,

pattie & gary, gracie & max (forever in our hearts!)

Afternoon Fun Pics!! 1:52pm

And.. while Daddy's still here..  (p.s. Just came back from lunch, and Gracie took 25cc's by bottle with Margo).. Woohoo!!!



Great Family Picture!!

Thanks, Michelle.. for the HATS.. we LOVE them.. so you think you can make a Mommy & Gracie HAT!!! :)

Our Sweet Pea is doing GREAT!!

She's on new feeds.. 1 hour on of 46 ml's and 2 hours off.. just started that at 2pm!!

Love,

Gracie, Mommy & Daddy, & Maxwell

"Hat" Fashion Show Monday! 9:25a.m.

Good morning, Monday!! I feel soo relieved, Grace is doing so well!

She is 5lbs. 10oz!!!

Good Morning, Momma!!

I was in here for 8:00 a.m. this morning.. I'm trying to get on Gracie's schedule.. so it looks like MMC might be housing me for a night or two stay as well..

Margo & I did a little 'hat' fashion show this morning.. Thanks to Heather's friend at work in Fairhaven for the hats.. they are beautiful!! This pink hat fits GREAT..the white one is beautiful, but getting small :)

Daddy's leaving today..we're heading to lunch before he leaves..

More planning to get my girlie outta here!!

Have a nice day, everybody!!

Love,

Gracie, Momma & Daddy, and my angel bro-Maxwell



110 days old!!! 2:57pm

Hi, everyone!! It's Sunday, 11/20.. Grace is 110 days old today! (plus 14 days I was on bedrest..which means.. 124 days in Maine.. WOW!!!)

Here we our, yesterday, with my goofy smile!! I look silly, but honestly Daddy didn't look that good of a smile the picture before this.. soo I was trying to get him happy..now it's me that looks like a goof!!

Grace is 5lbs. 9oz today!! Gosh, she is eating like a champ.. like my MIL says, "making up for lost time!!"

She took 15 ml's by bottle earlier today, and I fed her.

We went out for a very good breakfast with our friends, J&K.. a nice place in Portland.. I had eggs benedict & they were fantastic.

Gary & I just came from babies r us..thinking I'm going to buy the car seat & stroller, because I want them by next week.. our big "MEETING" is scheduled for next Monday the 28th, and we will make the doctors give us a discharge date!!  I am working this week on getting more comfortable with all Gracie's stuff.. from feeding to cleaning the g-tube area.  I did it this am.. & I'm conducting the meeting on Monday, so getting all my ducks in a row this week, to be armed with information & questions & requests!! (primarily a DATE for discharge!!)  It's coming up, I just know it!!

Gary leaves for home tomorrow, then will be back up early Thursday/Thanksgiving morning.

That's about all folks, til tomorrow!!

Love,

pattie & gary, Gracie & maxwell



Daddy's little Superstar! 5:44pm

Hi, everyone! Tried to post before, but Gracie wanted to be held & it was my turn.  All is well up here.. it's Daddy's birthday, and he got to spend an hour & half with her alone, as I went shopping to Target with my friend, Kelley!  Tonight, we are going to a restaurant called "Jimmy the greek" with J&K.. should be fun!!

Today, Gracie weighs in at 5lbs. 7oz.. and she took 10cc's from a bottle.. She did soo well..

So, because I'm with Gracie all week & Daddy's here on weekends only.. how do I encourage without being tough with him?? Any suggestions?? I know I'm a 'toughie' sometimes.. but it's not all about my way, I just think Daddy needs to learn from the nurses & not ME.. because maybe he'll find a different way of doing things, that'll be okay for him, but doesn't have to be the same way I do them.  You hear me moms out there?? It seems like we're struggling to communicate in here a little.. hmm.. maybe I need to drink a beer tonight! :) 

I have my list of ?'s going for next week for the doctor's..trying to cross my "t's" & dot my "i's" to get Gracie home in a few weeks.. I hope!!

I got to talk briefly with Ben & Emily this morning.. they just said "HI"

& Ben sang "Happy Birthday to Uncle Gary".. & did a fine job with it.

Okay.. chat tomorrow ..  Gracie is doing great.. settling herself down with bink & no binkie.. :)

Abby, have fun at your party tomorrow!! Wish I could be there!!

Love you guys,

pattie & gary, gracie & maxwell

TGIF..Daddy's back 1:24pm

Good afternoon, everyone! Gracie is 5lbs. 6oz; 108 days old, 42wks. 5days gestational.. she is doing well.  Last night, rumored had it she didn't sleep much at all.. we have to get her used to sleeping at night & being awake during the day.. (a couple of mom's I know who have left the NICU says it's hard to get them back into that night is for sleeping..argh!) .. we'll work on that!!

So, she is resting comfortably right now.  I read some books to her this morning, and she had two naps on me.  Then around 11:30, feeding team came in to try again.. she did 2 more cc's than yesterday..so she took 7 cc's by bottle!! Go Gracie!


Feeding by bottle!



Look at her.. she's wide awake taking that bottle, which is GREAT!! They said she's doing okay.  Marisa will be back around 2:30 to try again..and let me try, so I can try with her this weekend.. I don't want her to forget how to do it!  Most likely she'll go home with the g-tube (she can have continous feeds at night) & then we can work with a feeding team down at home regarding the bottle.  She is so precious!

This is what she looked like right after the bottle feeding!! I captured a cute expression!!




After all that sucking, breathing & eating..

Pretty good day today! I've stopped crying.. :) for the moment!!

We have a LOT to be Thankful for this Thanksgiving Season..

And will have the best Christmas Present EVER & at HOME, I'm sure!!

Love you guys,

pattie & gary, gracie & maxwell

p.s. Thanks to HH's friend at school for making another hat for Gracie!!

p.s.s. Daddy's back in about an hour!! TGIF, Daddy!! I'll be going out. lol.. if I was home maybe.. actually when I get home.. my 'girlies' better be ready for at least dinner & drinks monthly!! I'm just sayin................

And for the humbled part... 6:07pm

I don't know where to begin truly!  I left the hospital at 4:50..it was dark out, and I walked back to the RmcD house as I really need to feel the crisp, cool air.  I was very overwhelmed.. just feeling like a new mom does when they're trying to calm a crying baby all day.  Even in the hospital, the last hour or so, was very difficult..as I think poor little Gracie needs to poop; and she was soo upset!

I got into a crappy chat with Gary, as he was telling me immediately about his day..and blah blah blah.. and here I was waiting for him to "sense" that I felt frustrated..and maybe lend me some sympathy.. (Men just don't get it sometimes!!)..and he didn't.

I called my friend, Paula..and was crying to her.

I got inside my room at the house..and when I opened the door, there was a card that had been slipped under the door.  (I have received NO mail here, and I love mail.. good mail that is! lol).  I looked at the return address, and didn't know it..other than it was from Fairhaven.  "Oh," I thought.

Then it just hit me like a ton of bricks..literally!! I wept & wept..and have had the BEST cry since Maxwell's passing.  I'm still crying, even as I write or try to express my deepest, humbled GRATITUDE.. for ALL OF YOU, my Fairhaven High School classmates of 1987!!   I can't believe it.. I would've never expected this.. it was a card with checks & cash from my classmates..with wishes of thoughts & prayers for all that we have been thru & going thru!!  I don't know how to say "thank you".. I'm humbled by the even smallest generosity of these people.  The "thought" itself would've been more than enough. 

From the bottom of our hearts; words truly cannot express how thankful
 we are to each & everyone of you!! 

THANK YOU!! Each & everyone of you who sent us a SMILE & a TEAR today with your thoughts, prayers & givings!

We will be opening a savings account for Gracie in her name back home.

We will also be making a donation in Maxwell's name on behalf of the class of 1987 for something.  I'm just going to pray about it, and see where it leads me.

THANK YOU!!!!!!!!!!!!!!!!

Overwhelmed & Humbled 5:43pm

HI! Today has been a huge bag of emotions for me.. I did not sleep very well (as most of you know reading my last post).. and I was up fairly early, tried to stay in bed a little while longer.. I don't know why I couldn't sleep, just overwhelmed I guess.

Gracie had a good day today.. she was just a normal 'fussy' baby, and it was very overwhelming for me.  I know I'm being such an idiot.. this is good that she was crying, and being 'fussy'.. I'll never get mad at a night nurse again saying she was 'fussy'..because that was her today.  I think she's really just getting used to the whole feeling full feeling, and trying to poop, and trying to breathe! We are asking her to do so much.  In her little life, already, she has been thru soo much..and now we are expecting her to feed at a higher ml for 2 hours & then take an hour break.  She must think we're nuts!  Poor girl. 

This is a neo nurse practioner, Cindy above helping me put together Gracie's new red, white & black (developmental) mobile.


And here is on the right over Gracie's crib.. she was looking at it for a little while (it's very loud!).. she seems to like the lights of the aquarium better, right now!





So, Gracie went from continous hourly feeds of 15cc's, to receiving 46 cc's of feeding over a 2 hour period, off 1 hour.  I think she's more fussy, & her 02 sats drop a little as she gets full & not sure of that feeling.. (remember this is the first (official) time that she has gotten food into her belly.. she always had feedings thru the NJ (bypass the belly into the small intestines).  So, she needs to really work thru it.. so this is what's called a 'bolis' feeding.. she does get an hour break from feeding, and is usually calmer in that hour... it's just something new to get used to..for her & for me!!  These feedings started around 11:30 a.m.  So, then around 2pm.. the "feeding team" came in..

And this is Gracie taking 5ml's by a bottle for the FIRST time.  And she did OK!  They were happy that she didn't dip her oxygen levels that much.  She swallowed some & then took a break (with a deep breath) when needed.  She did okay!!  Big Girl.. Mommy's soo PROUD of you!!!!!!

They are going to try & come in everyday.. because it's definitely going to be one of those tasks that they're going to have to keep practicing on her.  They want her to learn that eating is fun; to avoid having any oral/mouth adversions!   She did great, for her 1st time.. 5ml's was all they were expecting for her to take & that's what she took!!


I left with my neighbors, Kelley & Josh, and baby Will going over to CCN (continuing care nursery..like a level 2).. I took pictures for them, as they moved their stuff over there.  I was asked by the doctor yesterday if we wanted to move over there & I said 'no'..that I was pretty independant with Gracie here in the NICU & that we've been for 107 days & that's where we will be discharged from!  But I am sad, that Kelley & Josh will be on the other side.. I will, of course, see that at the RmCd House for dinners & such.  And after Kelley was feeling last night, I'm glad this happened for her today..because she was relieved..it's not a definite timeframe on when they will go home, but it's one step closer.  And we are good staying where we are..we're just very territoral!!!! :)    So, thanks for saying that extra prayer for Kelley & Baby Will.. prayers do work, even though sometimes I'm not sure.. all I have is prayer!

I did find out today that XTRA PRAYERS are needed for Gracie for next Wednesday evening.. Can I truly ask for more prayers from all of you?? Really?? It seems that all I ever do.. but, Grace had her hearing screen last night & she was fussy & they didn't get a good reading..soo she has a repeat test next Wednesday.  I ask God to heal her.. she has been thru soo much, she doesn't need any other issues.  They like to take the test when they're sleeping, and go at night..but I guess last night she was a big fuss muffit!!  So, they're coming back on Wednesday!

 

Lasagna for dinner tonight.. LOL.. I know I'll make some of you laugh..

A good but overwhelming day in Motherhood!!


Love you,
pattie & gary, gracie & maxwell