Internet is back up! 10:01pm

Yea, the internet was down again at the RmcD house.  And the volunteer didn't know where the router was to reactivate it.  The night manager must've came back & she knows where it is.. soo vua la.. here we are.

Gracie had a good afternoon.  She slept for most of it.  But she was bright eyed & bushy tailed as I held her around 5pm & the surgeon came in to talk about Monday.  Gracie just stared up at my face, from my arms.  So cute! At one point, I had to interrupt the Surgeon for her & the nurse to look at Gracie.  She was just staring.. aww.., my mom!! :)

I think we're all set for Monday at 11:30, just need to fine tune some details.. I'll let Daddy take care of those questions tomorrow or Wednesday.

A student nurse, Dani, who's worked with Gracie before made this for us today!  Today is Gracie's 90 day birthday..and those are her hand prints & foot prints from today & to the right when she was first born.  These are also very nice keepsakes!  Thanks, Dani!

So, tomorrow's a NEW day..  Gracie is getting big..she'll be 3 mos on Thursday.. wow!! She's come a long way..I just hope with this surgery, the light at the end of the tunnel is visible..for all of us!! Please keep her in your continued prayers..and May God bless each & every one of you!! We really appreciate all the prayers!!



Love,
pattie & gary, gracie & max

Happy Halloween!! 1:28pm

Happy Halloween!! Gracie was dressed in her Halloween costume when we arrived & in her Mamaroo!!

My 1st Halloween!!  A Pink Skeleton

Here is Gracie! She loves her 1st costume!! She had a big poop right thru her halloween bedding, but kept her costume clean!  So, Susan & Danielle (rn's) gave her a morning bath:

Here she is getting all dried up! Yes, we can NOT wait til all that tape is off her face!! She has such a cute face, and it's always covered with tubes & tape.. ughhh!! :(  But a week more.. just one week from today, she'll have her surgery & won't have to have any tubes on her face.. I think she's going to take off from then..

So, she's been gaining fluid weight.. that weight she gained & lost this weekend, we are sure that's been just fluid.  She is down again this morning, losing another 45 grams.. sooo I don't know.  I might just resign myself to wait til after surgery to report the gains.. I get too frustrated that she gains & then loses.

Daddy just left for Fairhaven.  Me & Gracie will continue to hang out. 

We hope you all have a Happy Halloween!!

Be safe!! I  miss Emily & Ben today, this is the 1st Halloween I am not with them.. since the past few years.  I hope their costumes work out.  And next year, I'll be going to Boo at the Zoo with Gracie & The Hooley's!!

Gracie is having a quiet day.  She's at the age where she likes to be held.  So Daddy held her for more than an hour this morning; and now she's sleeping!!

Happy Halloween! 2011

There's a close up of her costume.. it's suppossed to glow in the dark..if it does later, I'll take another pic!




Love you guys,
pattie & gary, gracie & maxwell

Happy Hallow's Eve! 3:33pm

Happy Hallow's Eve! I think the nurse that weighed Gracie Friday evening messed up..  because there is no way she would've gained 80 grams, and then lost it in 1 day.. soo today's weight is 4lbs. 3oz.  That's okay, she'll get there.  She's a little irritable, maybe the hernia is hurting more than usual.  But she looks cute in her halloween outfit #3.. :)

Mommy's Little Pumpkin!

So here she is!  So cute! We can't wait til she has all that tape off her face.. just given her another week, and then we'll really be able to see her face.  Those pants are NB (newborn) & they're very big on her. We have tomorrow's costume ready for the morning nurse to put on.. you'll just all have to wait & see what it is.


We just got back from lunch with Josh & Kelley..and a stop at Target.
So, we did get some snow last night..about 6-8" inches.  And it's cold up here..brrr!! Remember I've been here since summer, so I need some boots soon!



Well, that's all folks!  Be safe if you're going out to any parties.. watch out for the vampires!



Love,
pattie & gary, gracie & maxwell

It's snowing!! 9:26pm

It's snowing! It's official.. it's white.. and looks pretty.. here's a pic:

RmCd Courtyard..1st Snowfall 10/29/11


Gracie had a wonderful day! We gave her a bath in a big girl tub, and she did great with it.  She did cry a little.  Then she fell asleep for a few hours, she was just so comfortable & got good rest! Lots of growing to do, that little pumpkin!

Big Girl Tubby!!


Will (her neighbor) also got a bath, so we snuck over there to see him.. almost could've walked out with her..

Mommy, Gracie & Penny (RN)


We just had a really fun day with Gracie.  She did too! Mari & Happy (nurses) stopped by to see us and look at Gracie.  Everyone loves Gracie.. and everyone is so happy & proud at how well she is doing.  We have a chart up that staff & us are guessing her discharge date.  I'm guessing 12/9, but the dates range from 11/28 to 12/22..
We'll keep you all posted.  Let's get thru this last week before surgery, I think she's going to be close to 2 kilo's (which is 4lbs. 7oz).. She's almost there!!


Dinner was stew meat again, so Josh & Kelley & us ordered Papa John's.. it was very good & definitely something different.

Forgot to mention that the small thin tube (OG) had to come out & they put another one in her mouth.. she's doing better with that one.  And ... after all that chatter this week & the picc line being put in on Thursday; it had to come out this morning because it was very inflammed!! :( ugh!! poor baby.. soo we are not sure if they'll try to put another one in in a couple of days, or wait til we are closer to surgery date. Geesh!



We love you guys!  Thanks for reading and keeping updated!

Love,
pattie & gary, gracie & maxwell


p.s.  I got a nice email last night from Mollie (a teenager in Fairhaven)..who loves reading the blog.. and said I was a great mom.  Thanks Mollie!!!!! :)

Penny & Mamaroo Sat., 10/29/11 @ 12:55pm

Good morning our friends & family!! What a great day today is.. it's Saturday, and up in Maine "they" are saying 5-10" of SNOW tonight.. boy, am I excited for snow or what??

 No.. that's not what I'm excited for.. I'm excited to see Gracie in one of these:

Thanks to our nurse, Penny! Gracie is in rock a bye motion in this Mamaroo!! She's loving it.  And Penny put in a new OG (oral gastric) tube..it's a little thinner than the other, but I think easier for her to remove.. we know how much she loves removing the tubes.  Don't worry, Gary went to get the nurse..  She's fine!!

Here's a close up!  So cute!!

Gracie did gain weight as well, she is 4 lbs. 5 oz!!

YEAAA GRACIE!!

Okay, gotta go check in with Gracie girl..  happy Saturday!

Love,

pattie & gary, gracie & max

Thankful for Friday.. 10/28/11 @ 7:47pm

We are thankful everyday for Gracie! There's some new faces at the RmcD house, and their stories are worse than ours.  We have Gracie.  We are blessed to have her in our lives, we just can't wait to take her home.

Good morning Momma!!


This is her 'good morning' momma picture! You'll all be happy to know the IV in her head, was taken out today!! (Another thing to be thankful for!)  Look how cute she is! (#3 to give thanks for!)  She had an okay day, a little irritable... you can tell when she is in pain from the hernia.  Poor darling! 

She lost a little weight today, just 20 grams.. so again still in the 4lbs. 3oz range.. so we're hoping for a good weight gain tomorrow.  A baby at this size & age burns calories by the littlest things..yesterday, while they were putting in her picc line, she was burning alot of calories..so really could've been why the weight loss.  So, today she had an easy day.. I held her for about an hour.. so she got some good Mommy time.

Daddy Loves ME!!

Daddy's back & was greeted by Gracie in this onesie! So cute! Thanks to the young lady that gave me 4 (including this one) onesies from the RmcD house.. they do fit & they're great!!  Thanks!


Dinner tonight was Hungarian Ghoulash & spinach salad.  We decided that it was beef stew with carrots, made by a hungarian! LOL.. we crack ourselves up!

Okay.. My mom's calling in.. gotta go.. but one big THANK YOU to Heather for being crafty.. she made a book bag for Gracie & this cute 1st Halloween diaper "blankie"

There is a baby under there.. lol.. daddy took the pic!

I told Kelley about the diaper blankie..and they are all impressed with Heather's crafty work. And Heather has 4 kids.. do you know how long it took me to make the 2 things I made for her for Halloween?? You'll see pictures this weekend..



Love you guys,
pattie & gary, gracie & maxwell

3 Seasons Friday, 10/28/11 @ 10:02a.m.

So, Gracie & I have been here in Maine for 3 seasons:  Summer, Fall & now Winter.  I saw snow last night as I looked out my open window (it's soo HOT in my room), just big flakes coming down from the sky with a mix of rain.. it was actually pretty.  And I have a bright street light that shines thru my window, so it made a very pretty glare.

Anyway, I brought the laptop into the hospital today, but forgot the card reader for my pictures.  Always, I'm telling you!  Anyway, I came in today & Gracie was covered by people retaping & retaping her.  Geesh.  So, I went to level 2 to drop off a few cards for baby Evelyn that is going home today, and ran into our friend, Sue (nurse from labor & delivery).  She came & visited with Grace for a few seconds.

Ironically, on my way into the hospital this morning I saw this woman who had on a "fairhaven blue devils" sweatshirt.. so I had to stop her!  She is originally from ME but lives in fairhaven now. Nice to see a little familiarity, for a second I thought I was back in Fairhaven.

I just got Grace comfortable to go back to sleep.  She lost a little yesterday, too much energy spent with the 2 hour picc line being put back in. Arghh.. but she's still 4lbs. 3oz (just dropped 20 grams or so).

That's this morning's story.  Daddy is on his way back. Heather & Mady stopped in to visit Gary last night with stuff for Gracie..thanks guys!! Gracie is getting spoiled already.

I'll post pictures later.  Thanks to Nichole for mailing out some clothes for Gracie & Will.




Love you guys,
pattie & gary, gracie & max

Tiring Thursday 10/27/2011 @ 4:43pm

Good morning, Momma!! Yes, that's an IV in my head!! :( Geesh!!  They poke & poke so much, they are running out of IV lines.. so they had to put in my head.  Hopefully, after the 2 hours they spent putting in my picc line today, it's in & they can take this one out.. we'll know later on.  Poor little girl!!

But, Gracie gained 50grams last night, making her weight today 4lbs. 3oz.!! Yea!! Finally seeing some weight gain, or good amount..hope we continue to see it.  Will is right behind her, he hit 4lbs. 1oz today.. YEA, WILL!!!!

I was sad for a little today, saw my friend Jessica (the other MASS mom).. who checked out of the RmCd house today.  She has been at the RmCd house since 8/5 (her baby, Evelyn was born 8/3 too.. what a weird coincedence).  So, guess who's been at the RmcD house the longest now?? Yup, ME!! lol.. wow! Not a title I wanted, I think!  So, she was in a really good place.. going home to take all her stuff home & coming back up with her husband to pick up Evelynn in the morning.  I got to meet Evelynn today, and she's almost 7lbs. & cute as a button.  I wish them well.  I got her email address, so we will stay in touch.  And if we never do.. the friendships of the people you meet in the NICU & RmcD house..are never forgotten!!

I cleaned Gracie's room today.. put all her clothes in this drawer.  Look at all those clothes.  Now if I can get the nurses to dress her up in the morning.  Some do, some don't.  I'll have to work on it!

Auntie Sara visited.  And my friend from home, someone I worked with called me for advice today.. I was helpful! I finished the "Preemie Parents" book..it was very good!

Tonight's dinner is sponsored by a girl scout troop.. baked stuffed chicken breast.  Sounds good.  Last night's pork loin was sponsored by the Oncology Dept. of Maine Medical.  It was very good!

So that's my story from today!  Glad Gracie put on weight! Daddy's back tomorrow!



Thanks to some old time friends from high school who read the blog daily.. Kim, Wendy, Martha.. I appreciate your kind words to keep me motivated!!  We are doing great.. thanks!!


Love you guys,
pattie & gary, gracie & max

An Afternoon Quickie 5:01pm

Okay, so maybe not afternoon..but early evening!  Madrinha (godmother in portuguese) Dalila & Uncle Joe came to visit.. they have a nice time seeing Gracie..very emotional for all of us.  There last visit was 9/30, so Dalila says she's getting big..

So here they are!! Thanks for the visit..  Gracie's eyes were open.. because they tried to get the PICC line in & couldn't.. so someone will have to try tomorrow.  Madrinha got me a journal, and Gracie a 1st Halloween onesie.. Thanks for the visit guys!! :) xoxo

The surgery has been set for November 7th!  Which is one week from Halloween Monday.  Dr. Peter (Gracie's favorite attending doctor) came in to do a quick visit this afternoon.. we shrugged our shoulders & said "oh geesh, it's a hernia".. he's not back on days til January & I reminded him we will NOT be here then..but he's on for weekends & a few nights coming up..so we will see him.  He will continue to check on Gracie as well.  He's a good guy!! He's been with Grace since day 1..we like him! :)



Auntie Dalila & Gracie


Dalila held her for about 10 min; and I took over for a half hour or so.  She did great!! She's getting to be such a big girl now.

I gotta go do the 5 o'clock diaper change & temp check.

Rumor has it.. dinner is pork loin & applesauce & stuff.. yummy!! That'll be delicious!! Maybe I'll wait around at the hospital for Kelley & Josh.. so to make sure I have dinner pals to eat with.. I can't get caught in that oh so young crossfire! Sorry, but come on now.. :)

Here she is! Looking bright eyed & bushy tailed!!


A good afternoon!! Hoping for a weight gain for tomorrow morning!!



Love you guys,
pattie & gary, gracie & max



Wacky Wednesday 10/26/2011 @ 12:14pm

It's not really Wacky..but remember when fun107 had Wacky Wednesday?? Or someone had it.. I don't know.. Wacky sounds like a 'good fun word' for today!

My baby girl is sleeping! She's very tired.. growing & gaining weight is hard work!  She went up 10grams on her weight yesterday.. she is still hovering at that 4lbs. 1oz.. maybe tomorrow she'll have the big weight gain.



Here she is wayyy back when..



I'm going to take a picture later today, she's sleeping & I didn't want the light of the room to bother her.  Madrinha Dalila & Uncle Joe are on there way up..they should be here in a half hour or so.  I'm looking forward to seeing them.

The surgeon came in for a visit today. And we are looking at Monday, November 7th for the surgery!  Maybe we can light a candle the day before for Gracie to successfully have the surgery & come out and start feeding & growing.  That'll be a week from Monday (Halloween), she will be 41 weeks gestational; and this gives her just about a week & a half to gain some weight, and get some good nutrients in her body.. to help healing after the surgery.

I got here early again..found myself not sleeping well last night, so when I woke up I stayed awake.  I'm reading a book that Josh (Will's dad let me borrow), it's called, "Preemie Parents.. 26 Ways to Grow with your Premature Baby".. it's rather good.

Trying to practice P.E.A.C.E (as recommended in the book):

P-the Power of intention is greater than any current reality.

E-everything is Energy!!

A-All things will move into balance eventually.  (This too shall pass & in 2 months from now, Gracie will be rolling on the floor at home reaching for toys!!)

C-Caring for myself precedes caring for anyone else.

E-Everything is exactly as the Universe intended it to be.

I'm okay with the PICC line going in today, I know Gracie has just had "bad luck" with the picc line & infections..doesn't mean her bad luck is going to continue.  The picc line goes in instead of an IV that has to be moved from spot to spot.  The picc line will also be able to accept a higher rate of fluids (sugar & proteins) to help her gain, on top of her formula. 

I had a pity party last night & got badgered about it by 2 people within 5 minutes of writing it.. Thank you, honey & Heather for badgering me!!  I know.. I know..  EVERYTHING is exactly as the Universe intended it to be.. it is what it is & it too shall pass... :)

Thankful for today:

Gracie gaining 10 grams!!

Dalila & Joe visiting!!

Being able to pay some overdue bills, & not worrying about it!

Love you guys,

pattie & gary, gracie & maxwell



3 Seasons in Maine??? thoughts for Tues eve 9:47pm

They're (I should be saying 'we') are expecting a little bit of snow on Thursday morning up here in Maine.. that would mean that I have officially been here for 3 seasons.. summer, fall, & now winter?? Really??

I need to go to sleep, because I'm bored..and there's not much on the laptop I can watch..and I'm just sitting around thinking.. and you know that CAN'T be good for me!

Congrats to baby Will next door, who is at 3lbs. 14oz.. he's right under Gracie.  I know she's had such a tough time with feedings, I wish they had caught this hernia back in September.  Yea, she would've been smaller, but at least we could've gotten better formula in her to help her gain weight.  Instead, we're doing that now. :( 
She hasn't had any dsats since Friday afternoon..so that's good! But, I just want her to grow & get strong..and of course have good nutrition. 

This is how I'm feeling tonight.. a little upside down!! :(  I wonder if I had stayed pumping would Gracie have had a better chance at feeding with my breast milk..but I just know that really wasn't working for me in my stressful state, and I wasn't getting anything with it.  I remember the lactation consultant telling me to take a drug that is not FDA approved.. my husband was like 'absolutely not'.. I don't know..I'm having a pity party for me & Gracie tonight.. think I should just go to bed!

My hope is that she gains at least 1 oz tonight... that's the first thing I check when I get into her room. And that the surgeon comes in tomorrow, the one doing the surgery, not the one just to hear himself talk (although he is a cutie :).  I just want them to get moving on this..so she can get better & more importantly start feeding.

My precious little girl!! She is such a strong little girl.. what a "Medeiros" for sure!!


I had dinner by myself in "la-la" land downstairs (the 14 year old was there going thru pictures trying to figure out her baby's daddy; the 24 yr. mom of twins is back.. I like her (but she does have 2 other children that are 4 & 5, that she doesn't have custody of. I hope she's back on the right track. Unfort, her baby boy is not doing so well & prbly has a bad case of CP), then there's the 14 year olds' mother.. )  They all asked me to have dinner with them.. UGH NO! No offense, but this really is my entertainment.. and Jessica came in & saved the night for me.  She's still going home on Friday with her baby.. wow!! I will be the long lasting one at the RmCd house then..  I hope the first week of December gets here soon.. that's my prediction of when we'll be home.



Okay.. gotta get some sleep.. it's sooo HOT in my room & my window is open a good 10"..

Dalila & Joe are on there way up tomorrow.. that'll be a nice visit!! I'll post pictures.



Love you guys,
pattie & gary, gracie & maxwell

Fact 4 Tuesday. 10/25/11 @ 4:01pm

Facts for Tuesday 10/25/11:  Gracie has been off of Oxygen for 20 days!!! Way to go Gracie, girl!!

And you have 60 days left to buy her & I a Christmas Gift!!  60 days..can you believe it?? Geesh!  This year is going to be on-line shopping day.. on Cyber Monday for us!

Here she is from this morning, say Good morning Mommy!!  All wrapped up!  I guess she had an "ok" night..she was a little irritable.. (well you would be too, if you had a tube in your nose & a tube in your mouth; plus a hernia in your belly that makes you hurt :(.

Dr. Mallory is here.. ok he answered my 3 questions..like everyone else, every surgeon has their own opinion..let's just keep it to the 1st opinion/theory please!! All this other talk is unnecessary!!  Especially if it's confusing to the parent or parents & we aren't going to do it that way anyway.  (Dr. Mallory is another surgeon...this is a teaching hospital, you know..he comes around with his 'students'.. he's a cutie patutie) :)

Anyway.. Gracie is having a good day.. she laid with me for almost 2 hours and she needs to grow.  Nutrition was here to evaluate what she's taking in & how we can maximize for her to grow & gain weight.  I think we got it.. for the next few days, anyway.  No dates set for surgery yet, still trying to see if Gracie can gain some weight.

And here she is trying to spit up the tube...  She's cute, isn't she??

Well.. Susan (her nurse) is trying to get her to pee in a cup..okay, not a cup per se but a plastic thing that's taped to her clothes..so they can get a urine sample.  I bet you all wanted to know how they get a urine sample..hey, they tried to tape a 'bag' to her diaper & have her pee in that..that did NOT work!!

That's our day! Not sure what's for dinner til I get back to the house.. I'll wait around to see if our surgeon stops by, not sure though, cuz she's in surgery.  I'll write later..


My heartfelt sympathies go out to L.N.'s family & friends.   A wonderful man who leaves a legacy in the Fairhaven community.  He passed with esophogeal cancer this morning.  Many of us knew him.   And I was saddened to get the news.  I'm sorry.  May you rest in peace!




Love you guys,
pattie & gary, gracie & max

Silly Picture Monday in NICU 10/24/11 @ 5:53pm

Hi, just got back to RmcD house & the internet is working!! Yea! Gary left around 1pm, and it was a slow afternoon in th NICU.. that means the nurses get a little silly & of course with their jobs, sometimes they need a good laugh too!

Here's Gracie's 2 silly nurses with 'fangs', Susan on left & Margo on right!!  I have a picture of all 3 of us too.. silly people!!

The good news is the silliness helped them concentrate 5 minutes later to give Gracie an IV..and they got one in her hand.  We are buying our time not to give her a pic line, because if she needs it for surgery that's great..but not in this week that we're trying to get her to grow.. because we don't need her to get another infection.

Gracie had her eyes open the whole time they were doing the IV.. sooo cute!! She was looking & smiling at her Mommy.  She really is doing soo well & thriving.. :).  Thanks for all the prayers!! We just have to continue to stay positive for the surgery.  She has had no oxygen d-sats since Friday.. doesn't that tell you that the dsats were related to the hernia? It does to me!!  Get her feeds up after surgery, and she'll be good to go home very soon.. I hope!!  Can't wait for her to swing in her swing (the one I'm getting at my shower), and I can give her a bath in her luxurious spa tub; and dress her.. and hold her..and play with her!! :) All those great things!

Here she is smiling with her Mommy!! HI, Daddy, she's saying!! I miss you!

In this picture, she's rubbing Susan's face.. aweeee soo cute!!

Well, Olive Garden is for dinner tonight..yea.. and they serve us.. can't wait to get downstairs for breadsticks & salad... and something else!


Then I have to catch up on "The Good Wife" tonight..and maybe some other tv shows.


Thanks for thinking of us!! Dalila & Joe are on way to visit on Wednesday.. that'll be nice!!

BIG thanks to Nichole for sending clothes my way for Gracie & even some for her friend, Will. 



Love,
pattie & gary & gracie & max

Monday, Monday!! 10/24/11 @ 12:03pm

Hi, everyone!! Gracie is having an uneventful day, & that's what we like! She has lost some weight in the last week, after last week's events & such.. but everyone here is working on helping her to gain some "good" (we don't want her to gain fluid weight, because that's the weight she would lose the fastest) weight! 

So, she stayed the same as far as length at 44.5cm - 17.5" long

& she is at 4 lbs. 1 oz.

We hope to get her closer to the 5lb. mark by early next week, which will be great for her surgery.  I have been talking to Tricia (in IL) who's son at Gracie's age had to have the same Hiatal Hernia repair 2 years ago.. the same fundo procedure & the g-tube procedure.. so it's been GREAT talking to another preemie mom who went thru the same thing.  Her son is now 3 1/2 & doing Great!!  Thanks, Tricia!!  Also, talking to Melissa who's daughter had the g-tube.. I love reading these girls' blogs & really finding out all I can about these procedures. 

Gary & I are in a good place regarding the surgery & her procedures.. Gracie is going to be FINE!! :)  God & Maxwell is watching over her..  It's very reasonable to say after her surgery, she could be home within 2 weeks or soo... can you imagine??? I think that day that I leave Maine, after this extended stay, I will be CRYING my eyes out.. it's like someone said, the NICU is our community & has been our community for the last 2.5 months.. I'm going to miss everyone here.. the nurses, the doctors, the "rounds", the coffee guy downstairs who we chat with, the guy in the little booth in the parking garage that I wave to (& that just gets me in).  OMG.. one step first.. fatten up Gracie for surgery!  I'll worrry about crying after that!!

Here's my precious babe this morning.. she pulled the tube out of her mouth again..heheee.. They've since replaced it!  She is great, isn't she!!

A big SHOUT OUT to Kelley again.. (Will's mom) went back to work today.. I am thinking of you.. Gary heads home today!  Does that mean I'll have to text Josh to take my pictures when I'm holding Gracie?? lol

My friend, Jessica (who's mom to Evelyn, who was born ..yes, 8/3/11 & who is from Mass, and who was on bedrest here same time as I.. she just was vacationing in Maine when her water broke on 7/4..sooo she is ahead of us by a few weeks).. they told her that Evelyn might be ready to go home by the end of this week.. Awww.. I'm so happy for them!! Her husband, Alex, like Gary goes home weekly to work.

It's not how I would've planned it..this whole experience..however it has been a very up & down experience.  The ups have certainly been the 'community' of people we've met.  I've definitely cried alot up here, but I've also laughed alot.  I'm going to miss seeing Jessica around.. and chatting that we are the oldest live-in's at the RMCD house (age & been there the longest)..lol..

Please keep Evelyn & Jessica in your prayers & thoughts..that they are able to go home this week!!

Okay.. I'll check in later..

Love you guys!

pattie & gary, gracie & maxwell

Courageous Sunday 10/23/11 @ 5:31pm

Hi, everyone! "Courageous" was the name of the movie that Gary & I saw today.. for an afternoon 'date'.. Let's be real, there are no dates since we've been up here.  We do spend all our time with Gracie in her room.  We get to hold her, watch her sleep & comfort her when she realizes she has a tube in her mouth that she doesn't like there.

The movie was about 4 men that work for the sherriff's department & one of them loses their daughter in a car accident.  It was sad.  It was how the men committed to their families & their faith, even when tragedy was around.  It was very good.  I think it gave some feeling to how we are feeling with everything that has happened with us.

We have definitely lived thru a tragedy, in losing Maxwell.  But we are blessed & greatful to have had him for 4 days.  Some parents go thru 9 months and lose a baby right at the end.  And I'm sad for those parents, I'm glad & greatful that we had Maxwell for as long as we did!

If you mention my child's name I might cry,

but if you don't mention it you will break my heart.

We love the 4 days we had with you Maxwell. You were planned.  Your name was picked out just for you.  You are a living guardian angel in your sister and your parents.

Always thinking of YOU!!

So, Gracie has had a great day.  She did gain one ounce, so she is 4lbs. 1oz.  I hope she continues to gain this week.. fluff her up for her surgery; we should know by end of week when her surgery will be planned.  And will keep you all updated.

Heading back to the house for dinner soon!

A big shout out to Kelley (Will's mom) who heads back to work tomorrow for awhile, so she can take some time off when Will goes home!!  I'll be thinking of you, Kelley!!

Thanks to my husband, Gary.. who works very hard so I can be with Gracie all the time.

Love,

pattie & gary, gracie & maxwell

Holding my Sweet Pea!!



Tired Again 10/22/11 @ 10:36pm

Hi, everyone. I know you're tired of hearing me say, "i'm tired".. it's a different kind of tired.. it's an aggravating, i dont belong in Maine tired.  :( ugh!! it's talking to to many people in the last 48 hours tiring.  it's listening to 101 different opinions, including our own for the last 24 hours tired.  I'm tired, OK!!

This was taken with Daddy's phone today, as he was reading to Miss Gracie.

 Eyes wide open!

But I am doing a lot of my own 'research' on the surgery..reading Tricia & a few others blogs about the same experience with their children.  It certainly is helpful.  But then I stay up past my bedtime reading.. so I'll just have to wait to read it in the morning.  Every baby is different, I know.. but it's certainly helpful to read how it worked for others.

went to lunch today at Pizzeria Uno.. chowder was awful, but they did deduct it from the bill.. nachos weren't that great either, but we paid for those.  Got my bread for pb&j sandwiches for the week.. ughh.. can't even figure out what I want to eat for lunch anymore.  i just want to go home with Gracie & call this Maine experience a day!

I was able to take a two hour nap this afternoon.. as my MIL would say, "it's just a different kind of tired that you are".. we were at the hospital this morning at 8:30, just in case, part of the surgical team came in.. they didn't.  Geesh!!

Thanks to those who checked in with me today.. keep me sane, will ya!

Thanks to Kristen who introduced me to Tricia.  Thanks to Melissa who is sharing her story with me as well.

Going to bed now.. or soon.. I'm tired!

Love,

pattie & gary, gracie & max

p.s. Lasagna & salad were made for dinner.. that was good :)

Free is for ME! :) lol

Tired Saturday 10/22/11 @ 2:38pm

Good afternoon! The internet on the NICU floor is working now..yippee!! But I think I'll only bring the laptop in a few days during the week, and read more in here..or sleep.  Like today, for instance, I am veryy tired!!  A nap is due in my near future.

If you look closely at Gracie's mouth she sucked out the OG (oral gastric) tube..it's that tube hanging to the left.. hee hee! They put the OG tube in yesterday as a way to empty her belly context, to keep her from throwing it up or causing d-sats. So far it's doing it's job, but now it's a balancing act to get her electrolytes balanced (that's the sodium & iron, calcium, etc.)  But she sucks on the tube, and sorta pulls it out of her throat.  She can rest comfortably if it's not in, but we need her to gain a little bit more weight in the next week before surgery.  Geesh!  Get all that??

I'll write more later..but today is a little uneventful.  Gracie laid on me for about an hour & half earlier..and she did great. 




Til later,
Love,
pattie & gary, gracie & max

Long Day Friday 10/21/11 @ 8:43pm

Hi, everyone! It's been a long day, and I'll try to be quick but give you lots of information about our little girl!

This is Gracie's early morning "hello Mom & dad" picture!!  She dropped her 20 grams she gained yesterday, and that's okay..she's still 4lbs. 2oz.  Last night, about 1:00 a.m., she had a pretty big d-sat, where her stats dropped..so they stopped the feedings.  (We think the hernia is really bothering her..we actually see how it bothers her, she arches her back & cries.. this is the most we've heard her cry!)  Then this afternoon, she had another one.. a big dsat.  So, I'm pretty clear to them that I want the surgery sooner than later. 

We met with a sleuth of people today... another G.I. Specialist, another Pedi Surgeon, another Neo doctor weighed in on the conversation..and I gathered from the Pedi surgeon that her current weight is not an issue to have the surgery, whereas yesterday's surgeon said that she would like to see her weigh closer to the 5lb mark.  As of yesterday, we were originally going to wait another two weeks to talk about it (the surgery) again; but after the last 24 hours, we don't want to see Gracie suffer.. and we don't want to continue to see her have these horrible d-sats.  She is a smarty pants & she closes off her airway, so as not to asspierate into her lungs, but geesh how many times do we need her to do that?!

Anyway.. I think we've all agreed to let her rest & get some nutrition in for the next week, build up her strength a little and schedule the surgery for the week after.  So, she will have the hiatal surgery fixed with the nissin funlipcation & then a g-tube surgically placed into the belly for feeding (which she can go to a level 2 with or HOME!). We will work on feeds orally as well, and she will keep the g-tube in as long as it takes to get her weight & nutrition up.  Then she will have her umbilical & groin hernia fixed as well.  She'll be a new babe! We'll love her anyway!

Her shirt says, "Princess Preemie".. we put it on for Daddy!! His little Princess!

And Uncle Ross visited today.. we took him out for lunch at Applebee's and he stayed til 6:30ish..we had a nice visit with him.  Thanks for coming up Uncle Ross!!

I'm liking taking these pictures of people who visit like this!! :)

I know some of you had said you like my dinner posts; although Ross said he laughs with it.. but hey, at least your talking about it.  But I really post the dinners so people really know how GREAT an organization The Ronald McDonald House is.. and that every meal that is cooked here is done by volunteers!!

Tonight's dinner was chicken & salad, potatoes & the leftover beans from yesterday.  And the delicious carrot cake!!

I need to go to bed soon, and watch Grey's Anatomy!!

A big HUG & THANK YOU to our nurse, Susan today..who really helped us get our point across with the doctor's.. and to Mari (another nurse) who was just there at the right time to hear me bitch & cry!! :)  Thanks, girls!!

Love you guys..

pattie & gary, gracie & max

Random... Fri. 10/21/11 @ 8:35a.m.

A quick post before we headed to the hospital because I can't just leave my random thoughts inside me!

This was the conversation myself & Will's parents had downstairs last night, leaving dinner (which was amazing bbq night-pulled pork, cole slaw, mac & cheese, salad ;) yum).

Out of the blue... this 'girl' says ..girl is with her mom. (G-girl; M-Mom, P-me)

G=Guess how old I am?
Will's mom says, oh we can guess. Will's dad says "16"
P=20 (i only said that cuz i knew she had a baby..i was hoping a little older than a teenager herself)
G = no... i'm 14, going to be 15 next week & just had my 31week old baby last saturday.  We are in the 'icu'.
P=it's NICU.
G= oh .. yea, nicu! she weighed 3lbs. 12oz at birth, now she is 3lbs 6 oz.
Will's mom says, "both our babies are in nicu too"
G=Ohh.. really?? (like that teenager high pitched voice that drives people crazy).. ohhh..how much do or did they weigh?
M=The nurses were trying to give her encouragement with good stories.. and we had asked how many lbs. they've seen babies being born..like less weights.
G=they said that a baby was born early August that weighed only 1lb.. and she's doing good now.
Will's mom says, 'P..probly yours'
G=OMG, really.. how much did it weigh? (high pitched annoying)
P=I had twins, i lost one.  My daughter weighed 1lb. 13oz... (i was going to give her the #'s game Erin Brokivitch style, but figured she wouldn't get it..why waste it!)
G=OMG.. wow.. I love tiny babies..I want a tiny baby!

then she went into how the ambulance driver was FINE (her Mom said he was FINE as well, her & her other daughter were fighting on who wanted to go into the ambulance with this girl..so they could be around the FINE ambulance driver)..as the daughter, teen mom.. raddles off where he lived, I said "good night" & proceeded to my bedroom..


WTF!! This is the crazy shit I can't get over!  Many will say, "well the apple doesn't fall far from the tree".. I mean come on..I know teenage pregnancy happens.. and NICU is such an emotional experience for those of us who tried for years to get pregnant & had that emotional roller coaster; and now are in NICU with "birth plans" that we didn't plan.  This girl & her MOM for that matter are clueless.. Sorry teenage mom, but it's probably going to get worse before it gets better.. you have no clue! Just give your daughter some stability & love her.. and encourage her NOT to have a baby when she's a teenager!


My rants for Friday morning are over!! On my way to see Gracie..and Ross is coming up!! YEA!


Love,
Pattie (all me!!) :)

Apple of Our Eyes! Thurs. 10/20/11 @ 5:39pm

Hi, everyone! We are back in Maine, now til Monday (daddy anyway)... and I think expeting Ross to visit tomorrow.  That'll be nice.

Gracie is doing well.. weighing in still at 4lbs. 2 oz. but up 20grams (1.88kilograms); so she's steadily gaining weight daily.. definitely a plus!

Here she is greeting Mommy & Daddy when we arrived at 8:30 this morning.  We were up at 4:30, and didn't leave Fairhaven til about 5:30 (1st customers at D&D, and they messed up our order..HATE THAT!!)

I dressed Miss Gracie up today, in an outfit that her friend next door, Will's grandmom made..here she is & Will..(with his mom, Kelley's permission of course):

Doesn't she look cute?? I think she might be a headband girlie.. :)

those are apples on her outfit..
she is the "apple of our eye!"



And here is Will (on right!) with the same material.. Thanks Will's grandmom.. (hope she's getting on to making more..we will make a mint selling them on ebay :). 

Although, Gracie's nurse today, Susan.. told me my blog is great reading & I should think about publishing it..or writing a book about NICU.. I'm on it!! I've already started, trust me!!  Thanks, Susan!!

Miss Gracie taking some formula off the binky.  Our experiment to help with oral stimulation.  She did great today. (She's being held by her OT, Marisa)

Soo, you're waiting for the surgeon update.. here it is, we spoke in lengths to a pediatrician surgeon regarding Gracie's Hernia in her belly.  We asked alot of ?'s, I had 13 of my own (thanks to peeps who helped me put them together) & all were answered to my satisfaction.  Gary had some of his own too.  The plan is to wait about 2 weeks to see how Gracie does & to give her some time to gain some weight.  And then we will schedule a date for the hernia to be repaired (she also has a groin hernia & they will be able to do that at the same time, so that's great!!).  The stomach hernia gets repaired by being pulled back down into place (it currently 'slides' into the chest cavity, and back), and then sewed at top.  She will also have a "nissin  fundoplication" done at same time; that is to help with the reflux and prevent the hernia from returning.  (do a google search & read all about it).  She will hopefully soar after the surgery, and be able to feed from a NG tube (maybe an NJ while she's recovering some), but the goal is better feeds with an NG (to the belly) & to take a bottle.  So, in two weeks (unless they have to do it sooner, because she is throwing up too much or having too many d-sats), we will have a date on when they will do it.  If she, afterward, is feeding from the NG tube, she can be transferred to St. Luke's in NB, to continue feedings.. that would be our ultimate goal!  Soo, Gracie.. GROW, GROW, GROW!! :).   Soo..it's suspected that alot of these reflux episodes that she's having is due to the Hernia!  So, it would be a relief to get it repaired.. with minimal chance of coming back. 


So, keep us in your prayers.. I know that's continued.. and we Thank you for that!!

Going down for dinner & then I think bed early tonight..we are both very tired!


Love,
pattie & gary, gracie & our guardian angel, Maxwell!!

Hump Day Wed. 10/19/11 @ 9:15pm

Hi, everyone! Long, but GREAT day with Gracie & Auntie Heather.  Auntie Heather came in last night about 9:30pm with gifts galore, new Nancy Tillman books (2 of them!); and a painted picture from Abby & some Halloween decorations for Gracie's room.. can't forget the Halloween duck from Abby too!!  We talked til 2:00 a.m. last night, and then was up at 8:00 to see Gracie.

This was Gracie when we arrived!! Cute Pumpkin hat, Margo snagged for us!! Soo cute!!

I also was able to give Gracie her first bath in a little tub.  Here are some pictures Heather captured from the moment.  And Gracie did wonderfully with it, she didn't cry at all, and was very calm in the water.  Soo cute!!!

Here she is in bathtub! And here she is on right with her hair turbin in, drying her hair!!







We had a great day with Ms. Gracie.  The surgeon will be in tomorrow to discuss the hernia surgery with Daddy & I; and I will keep you all posted.  I, actually, came home with Heather (and we talked, and talked all 3 hours! on the way home.  Resolved the world's problems anyway :).  Thanks Heather!!  I then surprised Gary at our friend's Peter & Paula's house for dinner, he was very suprised.  We had a very nice dinner, and now home sitting on couch (after spending 20 minutes throwing away papers..those damn papers.. lol).  Will get to bed soon though, as we are leaving at 5:00 a.m.

Thanks to Lisa S. for all the clothes & toys & such..I'm seeing the clothes 'bags' for the first time.. boy, do I have a lot to do before Gracie comes home!!  (I need to find a bureau first for all of them to fit!)

Miss Gracie after her bath.. soo cute!!

And this is Auntie Heather with Gracie...

Okay folks..gotta get to bed!  Love you guys,

pattie & gary, gracie & maxwell :)

Good News/Bad News Tuesday 10/18/11 @ 6:59pm

   Gracie is 77 days old; 38w2days.  She 1.8kg = 3lbs. 15oz! (still on the cuff, but up 20 grams)

Hi, everyone.  The NICU internet is down for patients, so I haven't been lugging my laptop to the hospital.  My shoulders feel better!! I started reading a book there today & that'll keep me busy during my hours with Gracie (of course when I'm not reading or talking to her; or changing her diaper & taking her temp, which is every 3 hours).

This is what she looked like before her road trip to radiology today, (they were taking her back down to insert the NJ tube again & do a small bowel view to see if they could see what could be causing her pukies & irritation)

Her beautiful face!! & she's always sticking out her tongue

So, the good news is they figured out what is causing the throwing up.. it's a hiatal hernia, in her belly. Which means her belly is pushed up into her chest.  So, it can be painful & when she has reflux it pushes her belly up..probably causing her to throw up. The bad news is the only way to correct it is surgery! :(  I'm telling you, sadly it seems it's one thing after another!  Hasn't Gracie been thru enough?? Haven't her parents?? (Hey, God, it's me Pattie..are you listening????)(referencing the "hey, god, it's me margaret book)

So, Gary & I will meet with the surgeon on Thursday & will have a better idea when they are thinking of doing it.  I know pedi surgeons are the best at their job, this is their bread & butter; but it's still a little worrysome.  The G.I. specialist showed me the x-ray, and went over everything.  She doesn't feel they'll be long term complications, and she'll be able to go back to feedings afterward.  So, it wasn't the protein in the formula..so she will most likely go back on a regular formula.  Gary & I agree, that we hope it's sooner than later, the surgery, that is.. we just want to see her have it & be done with it, and move on to feedings.

This is what she looked like when she got back from radiology:

She's good though!!  Her parents are doing ok too! God is really testing our faith!  I'll keep you all updated.. Keep praying, please!!!

I think she's trying to tell me to stop taking pictures!! :) soo cute... Auntie Heather is on her way up... that'll be a nice visit.  She's dying to hold Gracie.. we'll see!!


Dinner was leftovers..yuck :(.  Gary says he'll take me out this weekend.  Good!!





Love you guys,
pattie & gary, gracie & maxwell

Manic Monday

Good morning Mommy!  I'm getting big. 3lbs. 15oz. 17 1/2" long!!  Tomorrow, Gracie will have the NJ tube back in & be on neocate.  We are advocating for her to get some more work with the pacifier for oral stimulation.  Which she did great with me yesterday; and she did great with her OT specialist, Marisa today.

This feeding thing is very frustrating.  Gary & I are doing our best to stay sane, but it's very hard.  Having a preemie baby takes a toll on couples, and everything that we've been thru since July 21st, I'm feeling pretty stressed.  I am on a few sites with other preemie parents, so there's alot of conversations with what worked/works for them..it's a good sounding board... but we are far from home too.  I don't know..

Good thing is that Gracie & I have Auntie Heather coming up tomorrow night for a sleepover & a visit with Gracie on Wednesday.  That'll be fun!

A dear friend of ours is dying of pancratic cancer, and my heart goes out to his family.. soo sad.

This year has Sucked! There I said it! Grant it we got pregnant & we have Gracie.. but the rest of this crap, I wouldn't wish on anyone.  When it takes you 3 years to get pregnant, you shouldn't have to go thru any of this.  I'm pissy today, can you tell??



with Marisa (ot)..eyes wide opened!



 Gracie laying on me! soo cute!!










Tonight's dinner is chicken parm, eggplant parm & vegetables & apple crisp! There's a lot of cupcakes around too.. Just what I don't need! 

Gary talked to the doctor who's on this week, we just want continunity in care.. every two weeks it's a new doctor with a new plan.. we just want what's best for Gracie.  So, it seems like we have a plan this week, please let's pray it all goes well.  (by the way, she has not had any apnea spells or regugers since saturday when they took the tube out). 

That's my story!


love you guys,
pattie & gary, gracie & max

Always an adventure! 10/16/11 @ 7:03pm

Just finished dinner of american chop suey, italian bread & very good cole slaw.. :)  .. And we had some adventure before dinner here at RmCd house.. this showed up:

Yup.. the fire alarm went off.. I thought it was dinner! But in fact it was the stove had droppings of it on the bottom of it, and started smoking & the alarms went off.  We all had to go outside.  I was on the computer when the alarm sounded & it was deafening.  Sad to say, I thought it wasn't a real fire, I took my time putting on my shoes & putting on my sweater.  We were told within 15 min. it was clear & could all go back inside.  (i was remembering my college days..when we would get fire alarms at midnight from some drunken fool pulling it).

Anyway.. they took some blood from Gracie & her blood levels were good, they didn't have to give her a transfusion (that's good!); and there's no infection brewing..(that's very good!).

Everyone seems to be on the right plan to wait til Tuesday to get the NJ tube back in & continue feedings.  She did not have any recorded d-sats today or pukes.. sooo there must've been an irritation of sorts (idk maybe the feeding tube???).. So, we hope they figure out what caused the irritation.. I would really like to see them try & give her a little bottle with nippler & a little formula.. she was sucking on the pacifier today like crazy.  She started to cry & was stretching, trying to take a poop..I soothed her, sang songs & gave her pacifier & she took it.  She is 38 weeks!!  So, we'll see what the next 2 days bring.  Grace did have a restful afternoon!!  And we put her in a new preemie outfit that is pink with hippomatumus's on it..here she is.. soo cute!! :)

Good luck to Julie, who's back to work tomorrow!! I'll be thinking of you!!
Thanks to Heather for a good text chat today :)
And Congratulations to Gracie's Madrniha, Dalila who ran her first Marathon!!


Love you guys,
pattie & gary, gracie & maxwell