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