National Premature Awareness Day! 8:45a.m.

It's something I had never considered.. having a Premature baby when I was pregnant, but I'm in this "club" now..and I'm learning alot .. and there are soo many premature babies being born daily.  Some babies have alot of medical & developmental concerns, they really need our prayers.  Gary & I have been thru alot, but for the most part, Gracie is doing well & thriving.  We have our little setbacks.. but some people don't have the chance to have a setback, for their preemie is born way to early & doesn't make it.  Don't be sorry for us.. be happy that we have Gracie & we are educating ourselves to be better parents for her.


To ALL my preemie board(s) MOM's...   Thank you for all your wisdom, and strength.. I can only be an inspiration because I have heard & cried to your stories.


For baby Izabella who was born at 24weeks.. Keep on fighting girl!! :)

For baby Will who was born at 27w6days.. You go Rock Star!! :)  You're doing great!

For baby Evelyn, who was born at 26w, and is already home.. "give your mama some sleep"..

I've met alot of preemies in the last 107 days.. and parents..   I hope in a year, I can really get out there & do my part in volunteering for the March of Dimes.. if you have a few extra $$'s, that's who you need to donate to.. the services they provide for families..is outstanding!





I'm not taking the laptop in today..I'm tired & I know Gracie will need an extra hold today..  so I'll update later with pictures.  Have a good day all!!

A big Happy Birthday to John Jr.. who's 2!

And Abigail Hooley who is 5!!!  Happy Birthday, Abby!!

Love you guys,

pattie & gary, gracie & max

Can't sleep! 12:15a.m.

Well, it's officially National Premature Awareness Day! And I can't sleep.. I'm thinking of Maxwell & Gracie.. re-reading the blog posts from the beginning (alot of errors, lol..but I figured I shouldn't correct them, because goes to show you how much stress I was under)..(or shows me that someday in the future).

Anyway, I hope Gracie's oxygen canular that was put on today is just a temporary thing.. I'll have to see what they say tomorrow at rounds.  Gary called in tonight, as his usual, and they said she was at 60% oxygen..which is alot.  When I left at 4:30pm, she was at 21% (which is room air)..soo I don't get why it went up so high.. I just think we've really been thru so much.. it's time to come to an end, and send us on our merry way.  I know we really don't have a 'plan' to leave..but probably within the next 3-4 weeks.. and I don't want this setback to be something more.

Please.. God.. hear my prayers.  I am grateful for Gracie! I do feel blessed.  I need you to hear me now, God. Please!  We've been thru enough.. don't let this be another setback, please.

p.s. God? Please help me to get to sleep!

Heather said it best.. 9:29pm

My dear friend, Heather..said it best:  "It's like the full feeling after the Thanksgiving meal, that you say, whoa. I can't breathe!"  Gracie was dipping a little with her oxygen today, not too low.. in the mid 80's..but she should be over 92, so they put the low-flow canular back on.  It's okay, I tell myself, she really just went to full feeds this morning & the NJ tube came out..so this is the first time her belly is feeling full..she's probably wondering, 'how do I breathe, when I'm this full'.. Once they start her bolis feedings, I bet she'll do better, because really imagine eating 24x7 continously without a break.. I'm sure we'd feel full & couldn't breathe either.





So, it's kinda dark...but you can see she has the breathing canular back on (see the shininess of the clear tape?) better than that white solid tape.. She was going back to sleep when I left.  She's sucking on a binkie that's taped to a blankie, so no one has to hold the binkie for her (genius, I tell ya.. those MMC Nurses!!)


So... I don't want to get all emotional again, but I'm receiving some great emails from people who are telling me how much Gracie's story has touched their hearts.  She is loved by so many, already.. it clearly does take a Village!!  Can you imagine all the positive vibes she's getting, thoughts & prayers?? I am so grateful!!

Smiling!!!

99% of these pictures are taken with my LG cell phone.. who needs an iphone, really? not me!!  Here she is smiling..she was smiling quite a bit this afternoon, and I was taking picture after picture.  My mom & dad saw this picture & remarked how cute she looks.. she's laughing, my dad said.

She's tired.. yawning.. again!




And then loves her aquarium.  I got her a black & white & red crib mobile.  Had it shipped here, and it came today..so I'll put it up tomorrow.. so she can stare at it and be continously smarter!! :)








I accepted an invite to Kelley's mom's sister's house for Thanksgiving next week.  It'll be nice.. I wasn't sure at first, but am glad we're going.  Kelley & Josh are really nice people.. and as much as I always have stories about some of the people here, really it would be much more boring if K&J weren't here. 

I had dinner alone, it was a thanksgiving meal.. turkey, stuffing, mashed potatoes, homemade cranberry sauce.. put on by a Mom to Mom's club!!  It was delicious.  Then went back downstairs to share dessert & coffee with K&J and K's mom.

If you have an extra minute, please keep Kelley in your positive vibes, thoughts/and or prayers.  She's having a tough time right now.. kinda the same feelings I've had for 106 days.. and I know many of you have had being preemie Moms.  She needs all the postivie vibes and prayers that we can give her.  Thanks!!

Going to sleep.


Our discharge meeting is 11/28/11 .. myself & the discharge coordinator met today, and will get the ball rolling with stuff back home.  I think we should be out by the first week of December.. I'm nervous!!! Arghh.. but I'm soo happy!!  Gracie is my pride & joy.. and forever Maxwell will be remembered as a fighter as well, for as long as he did fight.. we were grateful to have him for four days.. there's many moms out there that never get to meet their babies.


Thanks to Heather for again.. the answer!! :)
And to Jack, Olivia & Abigail.. Gracie can't wait to meet you either!! (Must have no COLD symtoms, wash your hands & gel them up!!)  (You can only SEE, no touching!!)

L.R.:  Olivia, Abby, & Jackson saying "Can't wait to meet you Gracie"




Thanks everyone..
Love,
pattie & gary, gracie & maxwell


p.s. Tomorrow, 11/17 is Premature Awareness Day.. Wear Purple for Gracie and all other premature babies!!  Thanks March of Dimes for keeping this in the forefront!!

BIG DAY for GRACIE!! 10:01a.m.

This was Gracie when 1st born..... 1lb. 13oz.

A big day for Gracie..


Good Morning Momma.. look NO tape!!



Here she is today.. 5lbs. 3oz!!!








And at rounds today, there was a big discussion around a discharge date & a plan to go with it!!  Woww..  I'm definitely excited, but very nervous.. this has been our home for the last 106 days!!  It's going to be very emotional to leave here.. leave this NICU family.  The doctor on rounds this morning, was Dr. Morrow & she was very complimentary on Gary & I as loving parents; and she agrees it's going to be emotional for us to leave.. but with all we've been thru, we'll be okay.  Our friend, Dr. Marro had stopped by for a visit right before rounds, so he stayed.. and he was very happy that we are on the mend to get back home as well. 

I would've NEVER thought I would've delivered my babies in Maine, but it happened as it did.  I will take this experience to be the best mom I can be.  And along the way, I have made a number of friends in nurses, and doctors who will always be a part of Gracie's & Maxwell's lives.  I promise to keep in touch yearly with the staff here, and hopefully when Gracie's about 2, we'll spend a long weekend here to begin to teach her where her life started out!!  It's been sad times here in Maine, but it's also been joyous & happiest times.. Gracie & Maxwell!!


Okay.. .. so you can tell I'm all emotional now! lol  As of this morning, Gracie is the big 5lbs!!! 5lbs. 3oz.. & she's looking & doing wonderful.  Speech therapy will be called in to work on 'bottle feeding' with her. She's at full feeds continously as of this morning.. thru the g-tube.  We will have a consult with the G.I. team about the formula, and slowly transition her to a home formula.  And within the next couple of days, she'll start her 3 hour bolis feeds.. with some bottle feeding, perhaps!  And then we'll start checking off her list, or making a 'to-do' list & getting it done. 

AMAZING GRACE.. WE LOVE YOU!!

We couldn't do this without all the support we get thru everyone's emails, thoughts & prayers.. YOU who read this everyday.. THANK YOU!!

love,

pattie & gary, gracie & maxwell

"End in Sight" 8:48pm

"End in Sight", said one of the neonatalogists about Gracie!! Yea.. that's what I like to hear.. definitely nice to befriend your child's social worker.. (I'm just sayin!!).. Actually, our social worker is very nice.. at times she'll just come in & hear me bitch.. soo who needs a therapist.  She's been great!!  Thanks, K!!

So, I guess we need to start getting our ducks in a row (not that I haven't tried, trust me).. I have found two G.I. Specialists in our area, both take our health insurance..so that's one thing out of the way.  K will work on setting up a meeting with the neonatalogists & the discharge coordinator, and our pediatrician & us.. to make the transition to home smoother for Gracie.  We already know who our pedi uses for early intervention (EI)..so we'll put a call into them as well..  Most likely, we'll see our pedi in the first week that we are home & the GI Specialist.. and of course, EI will be called too.. I'm guessing we'll be home by first week of December.. but I'll keep you all posted for sure!

Gracie is doing soo well!! She will most likely be up to 12cc's/hour of feedings tonight & tomorrow morning the NJ tube will come out. It's going to be a GREAT day.. I'm kinda eager to get there early..  I'll be happy if they take it out before I get there.. I'd like to see her full face for my morning picture!!  Wow.. this is such a big step for Gracie!

This is from today.. with all that tape! It'll come off & leave no marks, Dad!!  Now, you'll be able to see her full cheeks.. I can't wait!!  This is a long time coming.. She's doing Amazing!! Truly her name sake!!

So, as it will go..she will get full feedings continously thru the g-tube that's in her belly.. then they should soon start to give her 'bolis' feedings..which means every 3 hours (the full continous feed will be 1x every 3 hours) during the day; and then continous feeds at night. The tube will stay in her belly & we'll go home with a little machine to do her feedings.. then with the help of a speech therapist & an occupational therapist..we'll work on her bottle feedings (which she's really good with her pacifier, so I can't see something being wrong).  But it's not so much the sucking part..as it is the swallowing & remembering to keep breathing.. these things we take for granted.  But I know Gracie will soar.. and we are OK with having her home at first with the G-tube.. we've been here long enough, don't you think??



I need to go watch some tv & unwind from billing :( .. all done, thankfully!! And hopefully we'll hit the 5lb mark tomorrow..if not tomorrow then Thursday at the latest.


God bless everyone!

love you all,
pattie & gary & gracie & maxwell

p.s. Chicken nuggets & tator tots, cole slaw & salad for dinner. it was OK! :)

Up by 3!! 1:04pm

Hi, everyone!! Gracie is making strides.. surgery wanted her to go up 3 cc's/hour every 12 hours, with the g-tube.  So, she is at 9cc's/hour on the g-tube, as of right now & 5 on the NJ tube.  Tonight she'll go up to 12.. and tomorrow morning 15.. which means the NJ tube will come out tomorrow!! YEA!! Nothing on her face..imagine?? You'll get the full view tomorrow.. I can't wait! Sorry, daddy can't be here for this event..but they'll be more Daddy.. we promise!!

Here she is listening to Mommy reading her books.  She loves her Nancy Tillman books!!

Today Gracie is 105 days old!!

She weighs 4 lbs. 15oz

She is 18.5" long

Daddy will be happy to know I got the Mamaroo back..  it's in OUR room.. so when we get the sleeve for it, we'll put Gracie in it this afternoon.. make sure she still loves it.

Today is billing! :( arghhh..  I was going to go to a hockey game with Kelley & Josh, but figured it was billing & I had to get that done..without it taking all night; so declined.  But today, good thing..cuz my tummy hurts today :( ughh! I gotta stop eating those hot tamales!

Just an fyi.. because I know you're all wondering.. yes, last night we had pasta! lol.. it was American Chop suey.. but it was okay.. we'll see what tonight is.. honestly, beggars can't be choosers..but could you eat pasta 5 days a week?? Talk about high carbs.. I can't wait to get back on WW when I get home.. & hope the weather sticks around.. so me & Gracie can go for morning walks..

Okie dokie..

Happy Tuesday!

love,

pattie & gary & gracie & maxwell

Eveing Update 6:10pm

HI, again! Not sure what's for dinner, but know there is dinner.. I'll head down in about 45 min or so.. Kelley's mom made some soup for us, and hopefully the 'guest chef' did not make anything pasta..


Gracie has a monkey mobile thingy on her crib now, I put her head that way & she fell asleep watching & listening to the sounds from it..here's a pic:

I know..soo cute!!

The surgeons came in tonight & were excited that she is doing so well.  They are going to talk to the Neo doctors & encourage to increase the feedings, to perhaps 2cc's, every 12 hours.  And then maybe by Wed. or Thursday the NJ tube can come out.  If anything was wrong with the tube, they said, we would've already seen it.  So.. I think it's great..and it puts us to one more step closer to leaving!!  I'm giving them a month, I think we'll be gone by 1st week of December, but hey you never know..she is doing soo fantastic, might be sooner!!

Here's another one from today!!  Can you see her chubby little wrists??   She's definitely got the tall & skinny gene, which is OK by me!! She is soo precious.. with it in mind that we might go home sooner, I'm starting to get nervous!! Arggh.. but it's a welcome kind of nervous..

Thank God! Thank God! Thank God!!  I'm not sure why he took Maxwell, but I do know that he gave us Grace & she is our little Miracle.  People have asked me if I think she'll be home for Christmas, if so, she'll be our Christmas Miracle.  I say it doesn't have to be Christmas.. she is our MIRACLE!! 



here's a picture.. the lights are on at the RmcD house.. in the courtyard, festive lights..

Not a great picture.. it's from my room window!


Ok.. going to play a game before dinner!!



Love you guys,
pattie & gary, gracie & maxwell