Happy SIX months, baby!! 9:57pm

Happy six months, Gracie!! Six months (corrected.. meaning her age had she been born on her due date of 10/30).. I didn't ask for a premature baby, but I'm blessed, WE are blessed to have her in our lives!!  Alot of times, too many parents take for granted that their babies come out at 'term'.. there are so many reasons why a premature baby

comes out early.. alot of the reasons are never identified.

1 out of 5 babies are born prematurely!

All sizes & shapes of women have premature babies...

and no TWO pregnancies are the same. 

I was seen every two weeks by my ob..and on all accounts my pregnancy went well.

I'm just saying...

Anyway.. Grace is doing great.. she's sleeping alot.. I can't wait to see a tooth pop up, as I'm sure she can't wait for it to come up too!!  She loves looking at her hands

and eating them!! :)

We had some drama last week with the visiting nurse organization that comes in.  Not the nurse, herself..she actually had agreed with us that we no longer needed services.  The only thing they would do is vitals & weight.  Grace is still being seen by her Hasbro doctor regarding the g-tube on a weekly basis & he is taking her weight as well.  Her 02 is wonderful.. we've even returned most of her oxygen tanks.  The rest will go next week, for sure!  To look at her, you would never think that she had just spent 18 days in the hospital.. she is growing & thriving.  Smiling & crying!!

Love you baby..soo much!!

G'night all..

Thanks for reading & keeping up to date!

Love,

pattie & gary, Gracie & max

p.s. And I don't know why Max passed.. I know women who have had premature twins, that both have made it..and I know women who have lost one twin.  I'm sad when I think about 'how' it happened. And I don't understand it.  But someday I will.

I just won't be able to tell you. 



Nice Weekend. 6:24pm

You don't know how great it is to just be home and clean, and organize & vacuum.  No, I don't like to do housework, but when it's done.. I feel 'balanced'.. and

with the weeks we've had this past month it was just NICE to stay home & clean..

and enjoy our baby!! Here's some pictures to prove it..

On Saturday, we went to our friends' twins, Olivia & Jackson's birthday party..This is Grace's party outfit.

Grace's friend, Abby got to hold her..(notice her hands in her mouth..this teething thing is terrible!!)

Sunday Morning.. Grace is just hanging out on the couch.. soo cute!!

 Sunday afternoon..just playing on daddy's legs.. she loves sitting like this!

Looking up at Daddy!! :)

We have an opthamology appointment on Tuesday..just a follow-up appt from being a preemie.. Keep us in prayer! 

I'm going to enjoy dinner on two different nights, with two close friends that I haven't

gone out to dinner with in awhile.. soo I'm looking forward to getting out!! :)

I've joined WW.. and am inspired to get healthy..trying out new foods..

I bought some wonton wrappers..and made a filling of fresh spinach & shrimp..

they were very good!! And you can just keep the wrappers in the freezer, use as you want to.  Anyone have any good WW recipes, please email me!

Going to try tofu stirfry this week...

It's about being healthier for me & FEELING healthier!!

We went for a nice family walk today, I finally got a new pair of sneakers..which really helps!!

Happy early birthday (tomorrow..4/30) to Olivia, Jackson & their Mom..Heather!

Welcome back to Doug H!!

And Madrinha is on vacation this week..so she's coming with us for our f/u

at Hasbro on Friday, cuz Daddy has to work.

Love my friends!! :)

And my FAMILY!

Thanks for reading, thinking about us & praying..

Love,

pattie & gary, Gracie & max



End of the week. 5:33pm

Grace has had a good week, and has gained weight! She is 11 lbs. 2 oz (from tuesday she was 10lbs. 8oz (i think.).. she saw her pedi surgeon today who's following her g-tube & it looks great, he said.. we don't have to go back til one week from today.

She is definitely TEETHING!! :(

She has her hands in her mouth constantly, and her gums are very white. I'm just waiting for that tooth to pop up!

Grace, here is sitting on the couch with her Mama.

She's looking great, for sure!

Tomorrow is our friends, Jackson & Olivia's birthday party.. Grace is excited to don her party dress!!    Noni & Grandpa left on Tuesday, and we are missing them!!

Today, was the first day Gracie tried pears & applesauce..seems like she liked it.  We are trying a bottle when we can.. with this teething stuff, she's not very interested.

Grace's cousins came down yesterday & we went for a walk to the beach..

I can't wait til it's warmer & my 2nd car is fixed so we can go out..

to the library, music together, swim lessons, the beach

On a sidebar:  Went to Walmart last night to pick up some teething rings.. the Walmart in Fhvn, is way in the back of the store.. I don't know why honestly..I have seen people steal back there & last night I was actually scared (stranger danger)..there were two guys following me.. Geesh..

Okay..gotta go get dinner..

I joined WW yesterday..hoping to lose some weight!!! :)

Love you guys,

Gracie!

pattie & gary, & max



Bye Noni & Grandpa! 8:32pm

Noni & Grandpa left today, and they already miss Gracie..but of course, wouldn't you?

Back to normal today, Grace had a great day.. 15ml's by bottle this morning.

A good night's sleep last night.. in bed with us from 5-7a.m.

A long afternoon nap today too!

Another 18ml's from the bottle this evening & some banana with cereal..

not sure she liked the banana.  I'll have to go back to the sweet potatoe.

Thanks for reading!

Love,

pattie & gary, Gracie & max



Teething & Hasbro. 8:54pm

Well, Miss Grace had a tough time sleeping last night.. her hands are now always in her mouth, her gums are looking very white..and I'm expecting a tooth or two to pop up very soon right in front.  So, we are tired tonight.. Gracie is already sleeping..let's hope she stays that way all night.. I'm soon behind her.

Today was the last day with my IL's, they are leaving tomorrow..

although sad they are leaving, I'm glad they got to meet Grace & had a good time.

They came over daily, and cleaned our house; did the dishes, folded laundry.. even my 86 year old father in law was cleaning the carpet of spots! :)  They are very loving people.. and we got take-out for dinner nightly..(i'll be glad to go back to somewhat cooking, need to eat healthier.. and lose some weight!!)

Here's some great pictures from today & the IL's:

 Grandpa & Gracie

Noni reading to Gracie!!

Noni & Grandpa!!

It was nice having them here!!  Thank God for nice in-laws.. :)

On the Hasbro front, we went for a follow-up today.. Gracie has been doing great without the NJ tube for 12 hours..we fed her thru her g-tube & it has not had much leakage.  This morning, she took 20 ml's with a bottle by mouth!!

Her doctor was happy how the skin around the g-tube looked today, and we have another f/u on Friday.  They really just need to stay on top of the leakage, if any.

And there was some leakage this afternoon.. soo we'll just stay on top of it.  She is on continous feeds at 30ml's an hour.. but at noon today, she drank another 35ml's (35!!! the highest she's taken by bottle since even in Maine!!).. by bottle!!

So there was a little leakage near the gtube area.. but she's doing well..

I got the go ahead to give her oatmeal & bottle..

Tomorrow, Daddy is back to work.. :(

We have had him home, since his parents were around..and Gracie coming home from the hospital.. he's been working from home.  Tomorrow, just me & Grace again.. I hope I can get her back to her schedule of napping!!  OT will be back in the house on Thursday..and speech therapy next week.

Thanks for reading!!

Love,

pattie & gary, Gracie & max

p.s.  Welcome home, my friend Lisa.. who's been on vacation in Hawaii..but still kept up with the blog!!! Let's do dinner soon.. make a date!!

p.s.s. keep the Hooley kids in prayer.. they're sick!! :(  love you guys!



God Bless Gracie! 7:35pm

A wonderful day we had, as Grace was baptized!!  She wore the same gown/dress that her Daddy & his brothers wore 40+ years ago.. it was soo beautiful..

Here she is..  Amazing Grace!!

Her Godparents, are my sister.. Theresa; my very spiritual friend, Dalila

& for a good Christian role model, our friend Peter.  Thank you to all of them for being there for Gary & I..and especially for Grace!!

 Grace & her godparents..

And this is Grace at the end of the day.. yup..she pulled out her NJ tube!!  I guess it was bothering her, so we are feeding thru the g-tube tonight & praying it doesn't leak!!

It rained today..but it was such a beautiful day inside the church with our family & friends..and then afterward for a luncheon!!  Thanks to all who attended..and especially for those who kept us in thought today!!

Back to Hasbro tomorrow.. hope we don't have to get another NJ tube..

Love you guys!

I'm glad my Aunt Irene, who has been a dedicated blog follower/reader since the beginning..finally got to see & hold Grace!!

pattie & gary, Gracie & max



The night before... 8:43pm

the Big day..  Daddy had a meeting today, so Gracie & I hung out with the IL's..

they were very helpful in cleaning my house :) .. aww, I could get used to this.

Gracie's gtube area is really reduced in the belly acid.. we change it every few hours..

and put 1/2 a diaper on top of it, to help with any leakage.

She pulled a little of her NJ tube today.. we'll be glad when we don't have to 'cuff' her arm.. (it helps her from pulling at the tube, she's very quick, you know!!)

Here's the picture of the day.. soo cute! And I am LOVING dressing her up in onesies.. with the gtube & leaking & extensions, I would only put her sometimes in a tshirt & diaper..and wrap her up with a blanket.  Now, I'm enjoying put her in onesies & pants.

She has soo much clothes.  Her 2nd outfit was a cute little dress, with a pair of baby legs.. & I didn't get a picture. :(

Auntie Paula babysat tonight while we went to Pasta House with the IL's..

it was a very good meal.  Now it's more laundry (never ending!), and packing up for the day tomorrow.

Wish all of you could come to her christening.  It's going to be very special for me..

but I'm also thinking of Maxwell.  I remember when they were both christened in the hospital, when they were first born.. the saddest days of my life!

Thanks for being a part of our life.. even just thru reading about it!

Our good friends, RH & HH's children have a contagious illness, so the kids won't be at her christening!! I'm sad! Abigail, (5) is not going to be happy she can't see her "cousin".. Love you Abby!! We'll miss you for sure!!

Love you guys,

pattie & gary, Gracie & max



Happy 100th!! 8:30pm

Red Sox celebrating 100th Anniversary today.. Happy Anniversary!!

We had a good day today meeting up with Grace's pedi surgeon at Hasbro.  They were happy how the g-tube site is looking.  They put in the small mini button (using it as a "cork" right now), hope to start feeding with it on Monday.  We are putting cream around the skin area, and watching for leakage...of course they'll be some leaking, but shouldn't be like a fountain!!

 Here's a few pictures from today..  Still feeding thru the NJ tube ..but boy, is she trying hard to get it out!!

 Here we are having dinner.. Gracie in her chair sitting at the table with us.. big girl!

And this picture, she looks like she's ready to tell a secret!!

Tomorrow, Daddy has an all day training & Gracie & I are going to hang out with Noni & Grandpa.. tying some loose ends for her big party celebration on Sunday!

I can't wait to post all her beautiful christening pictures on sunday evening.

Another good day with the in-laws. They stayed at our house while we went to hasbro this morning.. managed to clean the house for us, do some laundry & straighten out Gracie's bureau drawers of clothes. :)

Love them!!

Thanks for reading!

Love,

pattie & gary, Gracie & max



Mission Complete! 8:16pm

IL Mission Complete: Went to the airport, got there & the plane had already landed.. Gracie had a sign on her stroller that said, "Welcome Noni & Grandpa Pacella"..

Gracie was a great sport..even though she was up from 1-6a.m... :(  hoping that it's just her re-aclamating to the house..

I came out of the bathroom, and saw his mom standing by the men's room..so we just happened to stroll on over.. she did a double take & then cried..  She was very excited to see & meet Gracie!! (I cried too!!)

Then Grandpa came out of the bathroom & did a double take ..then he said,

"Why did you guys come.. we told you not to"..

he was excited to meet Gracie too!!

Nonni & Gracie (is that an orb? Max?)

And Nonni & Grandpa!!

We had a nice day.  Vevo & vevo' came over for a visit with the in-laws & Gracie too.  Although, Gracie slept thru it! 

It was definitely nice to have Gracie home, but  a little nerve wracking..

she had a little low grade fever this afternoon (we think just overheated..too much warm clothes on).. the nurse came today & she weighs 10 lbs. 15.5oz.. so we knew she had lost some weight from being sick..she's very long though..24"

Grace has been thru so much.  Her g-tube area is looking good, we change the gauze on it, about every 6 hours (last night it was about every 3)..soo we are definitely getting it better with every 6.  But we are going back to Hasbro tomorrow to see the pedi surgeon..just for piece of mind, that it's leaking & is okay.  We just want her to be GREAT for her christening!!  It's so important to us just for her to be feeling well on Sunday!

It's very nice to have the in-laws here, for sure!!

Thanks everyone for checking in!!

love,

pattie & gary, Gracie & max



We're HOME!!!! 7:21pm

This morning we got to the hospital early.. the doctor/pedi surgeon who was taken care of Grace wasn't sure she'd go home today..he thought "maybe just 1 more day"..

well, after his collegue talked to him, he said "she talked some sense into me"..

& he said we could go home today!!!!!

Grace had to go to radiology again for another NJ tube (her feeds are still going thru this tube, thru her nose, past her belly to her intestines).. on Monday we'll go back for a follow-up & hopefully a small/"mini" mick button it's called.. & hopefully she'll go back to her every 3-4 hour feeds.  Her belly looks good.. just still healing!!

 Here's her being home picture!! NO 02!!! What a proud moment at home, when I could take her out of the car seat & walk around with her; without pulling an oxygen tank!!  She is doing wonderfully!!!

 Here she is at the hospital, as we were waiting for the paperwork..  ready to go..

 And of course the best family picture..saying good bye to Hasbro Hospital :)

A special Thank You to all of you who have kept us in good thoughts & prayers!!

We are looking forward to surprising the IL's tomorrow at the airport..I will be sure to take pictures and keep you posted!!

Thank you again.. We could never do this without all the positive thoughts & prayers!

Thank you God!!  Thank you for hearing our prayers!!

Love,

pattie & gary, Gracie & maxwell



Tuesday eve update. 8:26pm

We had a good day with Gracie..

she looks great!!  She will be going home tomorrow..

I say that 'lightly'.. you know when you want something so bad, you think you hear what you want to hear.  That's how I feel..

But all in all, as I've been saying, there's nothing medically keeping her there..

it's strictly getting the g-tube area, skin to stop leaking & heal properly.

They have her belly wrapped with gauze and an ace bandage.. it's pretty tight on her, they will change it again tonight & then tomorrow morning by the pedi surgery 'team'.

Hopefully the mic/mini button will come in (they are awaiting for it to come in the mail)

and then be able to put a mic button in (as a cork)..not to be used for feeds right now.

She'll go home with the NJ tube in her nose for feeds..which is okay.. 02 will be off!!

And we'll do a follow up in a week.. I can live with her at HOME & an NJ tube for a week or so!

On the In-Law Mission:  OMG, I feel like such a liar.. good thing it's just talking to them on the phone.  My FIL (father in law) is driving my MIL nuts with asking if we got them a car, if we paid for it, etc. etc.  Good thing they don't read the blog!! :)

I told them for $110., I'll go pick them up..they laughed.. Soo, I'm not fully lying!!

We are soo excited to see them..but hope they handle it well.

I'm sure we'll hear a little grief on the way home..but then they'll look at Grace

& melt!! :)

Tomorrow will be the big update..

PLEASE keep us in your prayers for a discharge tomorrow!!

Please, Lord..hear our prayer!!!

Thank you guys!!

Love,

pattie & gary, Gracie & max

Day 17. 10:43pm

I'm waiting, not patiently, for Gary to get home so we can go see Gracie.  I did manage to vacuum the floors and put away clothes from the couch.  Auntie Paula called & is making dinner for us tonight.. that will be good!  It's bad enough to try not to spend cash at the hospital to get something for lunch, it certainly adds up!

 These pictures are from April 13th!! The above picture is with NOTHING on her face.. doesn't she look beautiful!! Oh God.. I can't stand that she is not home with us.  I can't believe it's been 17 days that we are at Hasbro..

The bottom picture is her with the NJ (this is how she's eating..thru this tube) but look at that smile..she is still such a smiley, happy baby!!  She is such a strong girl!! OMG!

I do know, that we are going home tomorrow..for sure!

There is NOTHING but the g-tube keeping us from home.  For that, we can come home & she can continue to eat with the NJ, and we can go back when they figure out what they are going to do with the g-tube area.  I don't want her to have surgery again, but honestly, if it's going to fix what's there & give her a new start.. it's whatever is best for her!  Please God, hear our prayer!!

Mission Inlaw Update:  Talked to my MIL (mother in law) last night & she again asked if we had a car picking them up on Thursday.  I said, 'yup'.. and said it was my father.. "vic".. LOL.. it's funny if you know my family!  We are excited to surprise them at the airport!!  They'll be here til Tuesday..looking forward to spending some QT with Noni & Grandpa!!

I'll update more when we get to the hospital.. hope it's soon.. I miss Gracie!!!!

Love,

pattie & gary, Gracie & max

We're having a celebration! 2:21pm

It's the day 15 & 16 update from Hasbro!! Yes, we are still here..but on the verge of leaving.. & after feeling completely stressed about our extended stay here and unsure about going forward with Grace's baptism.. it only took me talking (thru texting.. thank god for texting) to two very good friends..to say..

"We are having a celebration!!"

We chose Sunday, 4/22 as Grace's baptism..and we are going to move forward with that date & have it.  Our family has been thru so much, I think we all need this blessing of a baptism!!

(I better order the cake!)

This was from Auntie Heather's visit the other day!! Gracie loved being against Auntie!!

Here she is holding her binky.. soo cute!!

And today, enjoying her afternoon nap.  So she does have a canula on, but she's on very little oxygen.  Someimes she needs a little 'whiff' when she's in a deep sleep.  Then the other tape is attached to her NJ tube ..that's how she's getting food..her formula is by passing her belly right to her jujunum (intestines).  We will go home with her feeding done thru the NJ tube (for this week).. just to get home..so we can give the gtube area more time to heal.  Then we will bring Grace back as an outpatient one day next week, so they can figure out what they're going to do.. as far as the gtube area. 

The doctors know that we have IL's coming in from out of town this week to see their granddaughter for the 1st time.. as well as her baptism on Sunday.

As much as this has been a very frustrating, stressful time for me.. I'm happy to be taking her home, finally..and going ahead with her baptism!!

My in-laws are wonderful people.. and they are convinced that we've ordered a town car to pick them up from the airport on Thursday morning... Suprise! They should meet their first granddaughter at the airport..of course!!    I'm very excited that they are coming down.. we haven't seen them since last year at Easter time..

Another day at hasbro.. but we'll get out.. I know we will!!

Thanks for your thoughts & prayers!!

Love,

pattie & gary, Gracie & max



2 weeks! 9:07pm

We're still here! Gracie had a good nights sleep, her mom & dad not so much.. how could we.. we were sleeping on chairs that turn to beds.. I was too tall for it, so you can imagine Daddy was too!  But we felt good staying with Grace..who had a good nights sleep. 

Gracie was in good spirits today.. and her pedi surgery team came in this morning..

and low & behold.. the "wrap" they did yesterday of her belly, actually "sloughed off"

the stomach tissue that was building around the hole (stoma)..

Thank you God!! I believe that Maxwell & the prayers of soo many are

being heard.. and we thank you for thinking them & saying them.

Tomorrow is another day, and we hope to get the same news that things are looking great in the g-tube area..not requiring any 'surgical' intervention.

A smaller mic button has been ordered & the hope is to get it in on Monday.

Everything else, health wise for Gracie has been cleared to be 'normal'.

There may be a little iron defiency in Grace's body..because of the electrolites that were lost..but she'll just get extra blood work tomorrow morning to check levels & a shot of iron with her formula!

By the way, she is on 'regular' formula..we were going to make the switch anyway..

and she is doing well with a milk based formula at the hospital! Alot of pooping :).

We all know how important that is!

My friend, Katie stopped by today.. Katie, as you may remember, is also a preemie MOM from a preemie board that I'm on in Facebook.  It is going really well to meet & talk with her.  She brought us cards & thoughts from other preemie moms on the board.. plus $150. worth of gift cards for gas.. and a gift card for CVS.

We feel blessed.

Our friends, strangers, people who have had somewhat same experiences have us in their thoughts & prayers.  It's overwhelming.

People are good!! Thank God!!

Thank you Preemie MOMS!!

Home tonight.. we are TIRED :(

billing is due tomorrow.. :(

Love,

pattie & gary, Gracie & max

Day 13. Update 5:51pm

Well, the reason why we came, is the reason why we are staying.

I've brought my nightclothes & a change of clothes, with the intent of staying thru the weekend; this way I know that Gracie is cared for thru the night.

I have lots of pictures of Grace with nothing on her face, because she pulled out her NJ tube today, and I took tons before we had to go down at 11 to put the other one in..which she did GREAT!! :)

But then she got the new NJ tube for feeds & needed a little oxygen this afternoon.

Sometimes she dips with her 02 stats, and we'd rather her have a little 02 if needed.

So more good news from the renial people (kidneys).. when she came in her kidneys appeared to be failing.. but everyday since her #'s have gone down, almost miraculously.. (guess who that is!?) .. after a few more urine tests from yesterday, everything came back "normal".. her kidneys are working just great! And she is not acidosis..which is one of the other things they were thinking this week, because it seems her acid was higher than normal.  Again, she passed with flying colors!!!

The bad news is.. the g-tube site today didn't look so good today... apparently, the stomach tissue has grown over the stoma (not good).. but the skin around the hole looks really good (re-populated).. soo we are not sure of the plan, other than to have it covered up for the next couple of days..(which means the weekend).. then they are not sure what's next.  Perhaps a minor surgery to repair.. I don't know..this is the mere part of our frustrations..and it seems not to be getting better!!

So now we sit & wait! I reminded our pedi surg team that her baptism is a week from Sunday.. she laughed & said, "Oh, yes, I promised you would be home, right?"

YES... you did!!!!

Auntie Paula & Uncle Peter stopped by for a quick visit.

Auntie Heather & an Elmo balloon are here now visiting!

Daddy is doing billing.. and, me, after getting caught up on Days of our Lives already.. is relaxing!!!!

Please continue to pray for us.. strength for us, parents..

the prayer is definitely working for Miss Gracie.. and we thank you!!

Love,

pattie & gary, Gracie & Max

Day 12 Update.. More Good news 8:05pm

The great news is when I write we'll be going home..but I think there is a light at the end of the tunnel!  I've had many feelings of overwhelmness today..but Gracie is doing Great, and as a Mom all we really want is for our babies to be doing well.

I just need to stay positive & focused!!

Here's what I walked into this morning:

My friend sitting up with OT.. doesn't she look GREAT!! Notice that she has no oxygen canula on!!

So we've officially moved up.. off the PICU floor, and with that comes all sorts of anxietys.  We're thrilled & feel blessed that she doesn't need the ICU care, but on the other hand..we, as well as Grace, has to get used to a whole new room/environment, and new staff.  I was okay this morning, thinking today was the day we were going to move, but as soon as we got up there I felt very overwhelmed and anxious.

My plan is to stay over there tomorrow night & the weekend.. with the hopes that we'll be able to take her home on Monday.

Here's her new toy..compliments of Hasbro toys & the Radiothon that is happening today & tomorrow.  I was using Miss Glowy to hold in Grace's binky.. it only worked for a few minutes. LOL

The good news today was the report from Cardio.. all was seen "normal" on the 24 hour haltar heart monitor!! We'll have a follow up with cardiologist in a month.

On to other good news, Grace weighs 11 lbs. 5oz.  The week before she was admitted, she was 11 lbs 3oz & then by the time we took her to the ER, she was 9lbs..

soo she is definitely on the path of gaining weight.

As of 9pm tonight, she'll be at full feeds of 28ml/hour (continous feed with her NJ tube), and as of midnight they will take out the femr line in her leg &

 stop her TPN & Lipids!!

So, all in all, we've had good news today..

we just can't wait til we have GREAT news!!

Thanks for thinking of us!

Keeping you all in our prayers as well..

Love,

pattie & gary, Gracie & max



Day 10 & 11 Update. 11:34a.m.

Memories.. I'm writing this from Gracie's bedside.  She is sleeping..

sitting up in her purple chair.  When I came in this morning, she was wide eyed & looking at her hanging toys..

Yes, she has a little 02 on

(some people are more ..the word is eluding me..PROACTIVE.. that's the word)

Some are more proactive than others to wean her.. but she is only on 1/10 of 02.

And yes, that's the pesky little NJ tube (the yellow) one..which they couldn't

get in the right place..so she's heading down to radiology at 1:30 to put it under radiology).

Yesterday, a complaint to the Social Worker, got us more communication on a daily basis.. we now have a contact person & will get the information due to us daily..

We try to be here for rounds & unfort, with traffic or other.. we get here to late.

Today, I was here at 9:30, and I still had missed rounds.

Great news yesterday:  The EEG came back fine..no issues with the brain wave.  They, did however, burn her forehead (that's that mark you see in the pic) with one of the electrolodes (sp?).  Geesh!! But Thank God & the prayers everything looks good!

We haven't heard back from cardio as of yet, about the 24 hour haltar.. I'm sure someone may stop by today.

Here's another picture from this morning!  She is definitely looking more like herself!! She is now sleeping!

Plan for today: Pedi surgeons will be here to change the dressing for the gtube.

Radiology for the NJ tube.. and then start feedings tonight.

I'm here by myself.. which is okay! Daddy will bring Vevo & Vevoo at 3pm.. we'll hang til 5:30ish.  We've been going to my mom's house this week for 'week of prayer with the Holy Ghost crown'.. we say the rosary for a week.. I am committed to go nightly, maybe not tomorrow because Auntie Heather might be coming to visit Gracie.

Yesterday, I got to meet Katie.. a preemie MOM from my preemie mom board.

It was soo nice that she was here & talking to someone who truly 'gets it'..

The women on our board are wonderful.. we can talk about anything.. mostly mom to a preemie related.  Thanks for the visit Katie!!

Big doings about this hospital giving Grace her sixth Synergis shot..

"always something"

I pray we can go home soon!!

Last night, I was telling Gary..I don't even feel like a real Mom!!

Thanks for the prayers,

pattie & gary, Gracie & max



Day 9 update. 8:55pm

Here's our little friend.. how we saw her this morning!

She was wide awake in her swing!

Today was a very busy day.. a little frustrating as well.  A new "attending" doctor

from the Pedi Surgeons came in our office (she will be there for the week)

her take on Grace's g-tube is to have it covered with a stoma sponge & leave it like that for 3 days.. this will allow the tissue to rebuild & the skin to rebuild.  So they did what they had to today.. and will check back daily.. soo we are here at least for the week!

Also today, Neurology ordered an EEG (video brain wave), so she is hooked up

to that for 24 hours.  She has a white turban on her head..here she is:

Still in good spirits! This brain wave test was ordered because there was some rapid eye movements in the last week, but clearly they have disappeared.  Mostly to rule anything out.  She also had another neurology exam today. (my eyes rolling! :(

So, our princess never got to really take a nap this afternoon.

Then the cardiologist was in to talk to us, and they had ordered a 24 hour heart monitor, and that was put on her today too.  She was a busy, busy girl!

The cardiologist had reviewed her arithyma in the last 24 hours, and was pleased that it was slow & steady.. soo again, thinking that her body took a hit with the dehydration and the septic shock.  And now that she's feeling better, things are correcting itself.

This is how we left her..she finally fell asleep around 6, after everyone was

done bugging her!!

She is doing soo well with her oxygen!! They gave her a little morphine before her nap, to help with discomfort with them messing with the gtube area.. and she was going down a little on her breathing, but then right back up.  So, they may put her 02 back on up to 1/4 %.. which is nothing. She is really loving having no oxygen on..and is doing great!! We are so proud of her!!

A big week..trying to resolve some things..

figure out the g-tube..

maybe even get her into a NJ (for feedings only)..which will go in her

nose :(.  But it'll be good to get her some nutrition thru formula!

We'll see, sometimes they change their minds from one day to the next.

Til tomorrow!!

Thanks for keeping updated on Gracie!!

Love,

pattie & gary, Gracie & max



Day 8. 8:57pm

Vent:  so everything I said last night.. I have to half believe.

It's so frustrating to hear one doctor say one thing to you, and then hear thru the night (Daddy calls to check on Grace twice thru the night).. that there is an EEG pending &

an MRI.. from the neurology team & no one told us.  Needless, we got to

the hospital today & asked our nurse.. and then the attending doctor tonight.

She said that neurology did in fact want an EEG (brain wave) & an MRI

sometime in the near future.  This is because sometimes Gracie's eyes twitch

back and forth & they just want to rule anything out.  She hasn't been doing it much..

We think it's really because of the trauma she went thru when she first arrived.

And the neurologist, Dr. Ben that we met on Friday, said he thinks it'll just go away.

Now we will see.. I guess she may have an EEG in the next few days.

Today, was a good day for Gracie.. her nurse bathed her & then we put on her Easter dress.. she looked soo cute!! And no oxygen canular!!! YEA!!

Tonight, she's getting a femr line (like a picc line) for her TPN

hopefully they'll be able to put it in without a hitch.  Daddy will check on her later.

The g-tube is still leaking.  We really need to work on that

before we can go home.

Daddy & I are hoping Grace is home by the end of the week.

She's been in there too long as it is!!

Thanks everyone,

pattie & gary, Gracie & max

Happy Easter!! 11:30a.m.

 Happy Easter from Hasbro..day 8!!

Here I am above with my canular on..but no 02 on..

Then Julie, my nurse..gave me a bath

I look soo beautiful with nothing on my face!! This is a long

time coming for me & my mom & dad..

Here I am with a beautiful Easter Dress, that my Madrinha Dalila

gave me.. aren't I just beautiful???

And here's the best pictures of all..
pictures with my Mom & Dad...





I just love them!

Vevo & Vevoo gave me my first easter bunny .. it's soft & white..

and the hospital gave all the kids here a build a bear..bear!!

Wow.. I like Easter!!

Thanks for all the prayers in getting me better...

I'm feeling better.. I have two 'big' tests tomorrow.. & hopefully I will be home by Friday.  I really miss my crib, and my giraffee chair!

I miss my sweet potatoes & oatmeal for breakfast too.

Mom will post later about all the 'stuff' going on.. this is from

me, Gracie..saying "thank you" & Happy Easter!!

Love,

Gracie (&max!)

Officially been 1 week. 9:34pm

Today was a good day at Hasbro.

We missed rounds, but lots of docs came in to see Grace.

The first was pedi-surgery, who fixed the g-tube so that we could at least

start feeding her thru it.  Of course, pharmacy didn't get the 24 cal. formula up til 5.. so that's when the feed started.  Hopefully, there won't be alot of leakage and that 5ml's/per hour, can be increased to 10ml's hour.  I think once Grace starts feeling full in her belly, she won't be as cranky.  She really hasn't eaten other than fluids & nourishment/vitamins thru an IV.  We definitely think she's hungry!!

Secondly, the cardiologist came in (this is someone we can follow up with right

in our own area).. he said there was a little concern that she has irregular heartbeats..

it may not be something they would be concerned at right away.. but they

did want to put her on a 3 lead haltar monitor for 24 hours.  They will do that

Monday morning.. & have a report for us by Tuesday evening.

It may be something that will most likely just be an effect from this septic shock episode.. she was on a heartrate monitor at home & never had crazy low

heartrates..soo it may go away, as quick as it came.

Then, Grace had a neurology exam.. He said she did great.  Is a strong

little girl!! :) (we already knew that).. he didn't note anything wrong with her eyes..no focal injury to the brain, that he could see!! (Great news!!)

Since Monday, or Tuesday..at times, Gracie's eyes have twitched from side

to side.  She doesn't do it all the time, it seems it's done when she's sleeping.

Well, he didn't seem to concerned.. could be from the meds she's on and/or

this episode of dehydration..so it would be something that would take care of itself.

Good news all around!! :)

A stop at a friend's house on the way home..

and heading to bed soon..

Happy Easter everyone!

A day of rebirth..and new beginnings.

Thank you for your prayers!!

Wishing you all a blessed Easter Sunday!

Love,

pattie & gary, Gracie & max



Hasbro. Day 6 -- NO 02! 9:15pm

Great news today.. as of 3pm this afternoon, Grace was off oxygen!!

The doctor has been saying this week that she didn't think she needed even to

be on it.  Of course, if they give her morphine (for the gtube pain), because

it's a sedative, they do put her oxygen up a little.  Which is what they did

tonight, once we had left.  So, as of me writing this, she's back up to 1/4 % of 02,

but they are definitely weaning her OFF.. which most likely means

she will come home with NO OXYGEN!! YEA!!!!!!!!!!!

With everything that has happened to our poor little Gracie in the last

week, we really needed something positive to happen..and this is it!!

Here she is today, sleeping on Mama.. I held her for awhile & then Daddy held her too!!

She was up for a little while tonight.. so we caught this picture!!

Gracie's g-tube area was bothering her tonight, causing some high blood pressures, so they did give her some morphine..and she's sleeping & stable now.

The g-tube mic button is still out, as we are waiting for the stoma to close.  This area was so infected, it's just taking time for the tissue to heal.

In the meantime, speech therapist is in to see her & she is seeing PT & OT.

A cardiologist was in to see Grace today, with results from yesterdays Echo..

her heart sometimes has 'off' arithima..however, he said the echo looked good & there's no worry at this point.  He thinks that maybe the low heart rates is really just from the body recovering from such shock.. from this episode.

We got a thoughtful dinner made from one of Gary's co-workers..

Carmen made us a lasagna, garlic bread, green beans & gave us the stuff for strawberry shortcake!! So thoughtful. Thanks, Carmen!

It was nice to get the call that that was waiting for us.  We will have it for dinner tomorrow night, and freeze some lasagna!

Tomorrow's an early day.. we like to be there for rounds..

Auntie Tess visits Gracie when she works.. it's good for Grace & her mom & dad!!

Thanks everyone for your extra prayers..

Gracie is looking better everyday..

now if we can just all figure out the gtube area!!

Love,

pattie & gary, Gracie & maxwell