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