Hasbro. Day 5 9:30pm

We're into day 5.. :( 

Gracie was a little irritated today.. maybe she's just tired of people

messing with her! You know how it is at a hospital.. she's trying to get some sleep..

Speech therapy came in, then PT, then OT..

PT put her in a special chair today..to help her sit up (just to adjust her a little different way, then laying down).. here she is..

So she was sitting up for a portion of the day today! And then below, she was swinging away.. she did enjoy both!!

I know alot of you ..and our friends & prayer warriors are praying for her.. and we appreciate all the prayers.  From your mouths to God's ears..

Please Lord, our Gracie girl is going thru some different tests & we

just pray that they will all be optimistic, please!!

Please God, hear our prayer!!

We love her!! She looks good doesn't she??

A new pacifier.. she does pretty good with it!

Last night, they had to stop the g-tube feeds because it leaked too much..so the GI Surgery team had the mic button out for most of the day..they are trying to get the stoma (the hole) to tighten up, so it doesn't leak as much!

When we left tonight, the mic button was back in & they were going to try a

feed tonight.. We pray that it goes well.

On another note, her 02 is going really well.. & she was on a

regular canular when we went in today & only on 1 liter of 02..

they are going to try & wean her off oxygen altogether.

Wouldn't that be nice? To bring her home on no oxygen.

I hope & pray so!!

Back to Hasbro early tomorrow morning.. it's Good Friday!

A day we remember what Jesus did for us!

Thank you for keeping us in your prayers!

A big thank you to Eleanor, for all of Gracie's gifts.. we LOVE them!!

Love,

pattie & gary, Gracie & max

Hasbro. Day 4 10:03pm

 A long day!  I waited for Gary to go to his two court appointments today, then we went up to Hasbro together.. got up there around 11:30ish..

When we got there, they were just about to start to try & give Grace

a picc line, so they can take out the central line in her neck.

The central line, has more than one port on it for antibiotics, fluids, taking blood, etc.

The picc line would be for her one antibiotic they are giving.

Unfortunately, after an hour & half, they weren't able to thread the picc line.. :(

so the central line has to stay.  She was sedated for this procedure & became very cold..

so cold her body temp dropped, and her heart rate & blood pressure followed.

It was very scary!!!  Again, I was watching our daughter turn a color that

no one wants a baby to turn!  The doctors and nurses kept their cool, and worked on her, as they have been trained.  She was good within a few minutes & some fluid.

Just makes me think.. as Gary & I were just talking about..geesh

"what did I do in a previous life, to deserve this??" 

Our baby has been in the hospital, more time than she has been home.  On

Easter, April 8th, it would've been the day she would've been home more than the 125 days in the hospital..but now with this added time in..we're back to square 1.

We are getting her the care she needs at Hasbro, and they've been great..

just feel bad for our poor Gracie!

Here she is from tonight.. looking more like herself, a little less puffy!!

They were able to start formula feeds late this afternoon..that's a big plus!!

Auntie Paula & Uncle Peter stopped in to see her.

And Auntie Tess was in a couple of times for a visit today!!

We moved rooms again.. this is our 3rd room in 5 days..

We are in Madrinha Dalila's favorite #.. 222... Things are going to go well from here, I'm sure of it!!  Madrinha will be always with us!!

To a better day tomorrow anyway,

Love,

pattie & gary, Gracie & max

Happy 8 months & Good news! 7:43pm

Hasbro Update: Day 4

Today is Gracie's 8 month birthday!! Happy 8 months, Gracie!!

And the good news is that the staph infection that she has is just a regular bacteria skin infection that we would all have on our skin. So they are taking her off the 3 potent

antibiotics & putting her on one less potent.  If she responds well to it, they are talking about taking the central line out tomorrow or Thursday.

They are also weaning her off  the high flow oxygen.

Here she is today..looking less fluid puffy:

She's feeling better..she was getting ready to scratch her gtube & pulled her canular down once or twice today!!

Speech came in today to try feeding with her.. she took the sweet potatoe okay, just pushes with her tongue out, instead of pushing in.. but they will work on it daily with her.  Physical therapy & Occupational therapy came today as well.. and they will

continue to work with her, so she doesn't lose the services while she's in the hospital.

All going well.  Alot of deja vu' feelings..

but Gracie is definitely  doing better.. & that's what all our prayers have been doing!

Thank you!!!

Love,

pattie & gary, Gracie & max

Hasbro. Day 2 10:21pm

Just home from an all day visit with Gracie.  The big news today is:

Gracie got EXTUBATED!! Meaning she is OFF the ventiliator!!

Thank you God! Thank you for the prayers!!

Here's our sweetie today, with eyes open & giving us a little smile!!

As you can see, her face is still really puffy from all the fluids that are going into her!

She's got another NG (nasal gastric) tube coming out of her nose, collecting the acid from her belly. (Does it feel like you're reading this like we are still in Maine, because it sure feels like that to me!!)  By taking the acid out of her belly, it won't be leaking out of the g-tube & is giving her belly some time to heal.

Instead of the vent, she went on a high flow canular..her lungs needed a little more oxygen than a low flow (which is what she uses at home).. It's just really going to take some time to get her back to where she was pre-being sick!!

Here's another cute pic from her today.  She's laying on her left side!!  The tape you see on her right side, is the central line they had to put in when she got there on Saturday.  She went thru four months in the NICU without a central line; and then this stay she had to have one!! (stinks!!)

She's doing better today..  tomorrow will start with TPN (remember that word??)

Which is a mixture of nutrients that will be given to her by IV.. she needs to

get nutrition in her.  Hopefully by Wed or Thursday, she will be able to resume her feedings of formula thru her g-tube.  We hope!!

Thanks for thinking of us!

Alot of emotions of us being back in the hospital.

We were looking forward to taking Grace to sit on the Easter Bunny's lap!

We were looking forward to church with Grace & then an Easter dress!!

I know there's next year..but this is her 1st year of life..and it's not fair!!

:(    Sadness...

Love,

pattie & gary, Gracie & max

Hasbro Update Day 1 10:27pm

It feels like I'm writing from Maine.. we were just talking about how much

we have tried to protect Grace since we've been home & then suddenly this all happened.

And we know it wasn't 'suddenly', the doctors are saying it's been brewing a long time.

Since Grace has been home, she has never gotten a gas (bloodwork from her to identify how well she is breathing both in & out).. apparently, she has a very high (abnormally) C02 level.

Also her sodium was very high.  Her electrolytes are off, very unbalanced & the biggest reason

for this is all the gtube leakage she's been having.

How many times do we complain to you, to the doctor about her gtube leaking??

This is the frustrating part of our day!!

We got moved to a new room today.. we are in room 247.

Grace had a poop tonight, which is a good sign that her intestinal track is working well.

She had an ultrasound of her belly & kidneys, and both look good.

She also had a spinal tap done, and there was no sign of an infection.. so NO menginitis..

Great news with that spinal tap!!

The bloodwork from our GI doctor from Saturday morning, did come back

with an infection.  The puss that spilled out from the gtube was infact, positive for a bacterial

infection.  UGH!!!  She is on some pretty strong antibiotics, so of course it is going to kill the infection.

Just sucks that she has it.

Then the bloodwork that was taken at Hasbro yesterday, did come back with a staph

bacterial infection as well.  Usually it's a skin infection (perhaps the skin around the infected

gtube area??)  DEEP SIGH!!

Grace was on some blood pressure meds yesterday & was sedated.

Today, we walked in & she was completely off those meds.. and not sedated. But certainly, catching up on her sleep..she slept most of the day..opening her eyes just for a few minutes.

We are tired.  We are still aggravated.

We've received, once again, ALOT of support from family & friends

thru this blog.. and we THANK YOU.

Thank you for the prayers.  Thank you for the well wishes.

Thanks to Auntie Paula who left us dinner in the fridge..

Lasagna & Salad.. (just in case Ross you were wondering!! :)

Thanks to Madrinha & Joe who came out to visit Gracie today!

I'll update again tomorrow.

Love you guys, (truly!)

pattie & gary, Gracie & max

If you read this thru FB.. PLEASE keep it private.. email me instead!

I follow some blogs & I get the post to my email address.. if you are following ME you must also get it via your email.. if you happen to see my blog thru facebook & read this post.. PLEASE do not respond anything on facebook.  Let's keep this one private for awhile.

Well..today is an AWFUL day.. :(.  We are saddened to tell you that Gracie is in the hospital, at Hasbro in Rhode Island..with a severe bacterial infection.. her body went into septic shock.. and if it wasn't for me 'knowing something was wrong' or feeling like it just wasn't right, we would've lost her tonight.  My heart cringes when I write this.. but that's what the doctors have told us at Hasbro.

It's a long story.. and I am tired.. we are just finishing up billing, so that we can get back to her in early am.

Since she has been at Hasbro, Gracie is doing her miracle fighting as she does normally..she is taken well to the antibiotics & fluids.  She is sedated and on a ventiliator...but breathing above it.

Please keep her in your prayers!

Please keep me & Gary in your prayers..

We are just trying to stay sane and make decisions about Gracie's

care after this hospital stay! (which looks like at least a week to 10 days)

I'm sad that, once again, one or both of her doctors dropped the ball.

In the last 3 days, we have witnessed Gracie go from a happy baby to a weak,

fever filled lethargic baby.  We are pissed beyond belief.

We need to take a step back & reevaluate who we thought was a good doctor for Gracie, and I know that is going to be hard on me especially.

I'm tired.  Gary is tired.

There's too much to say & I don't have the right words to say it.. I will try to post tomorrow.

G'night!

love,

pattie & gary, Gracie & max

5 months corrected. 8:57pm

Check this out.. This was taken on 10/30/11.. (Grace's due date):

 She's soo tiny!! HATE all that tape on her face.. but love that cute face!

We were working on getting her 'chubby' for her upcoming surgery.

Here she is today.. in her own Mamaroo at home:

According to our nurses scale she is 11 lbs. 3oz.

according to her pedi scale she is 10lbs. 7oz.

I don't know what to believe.. I'm thinking it's closer to the 10lbs 7oz..because

we are having such a difficult time with her g-tube.. it LEAKS

so much.. we have to wrap up her belly with a blanket & have lots

more of laundry, the blanket only stays dry if there is no feedings..

but of course, she has to eat every 3 hours.

Tomorrow we are off to see our GI doctor in Brockton.. a Saturday morning call

to help stop alot of this leakage... praying it works!!

After a sleepless night.. Daddy stayed up with her all night.. sadly, Gracie has not slept in 24 hours.  She is in her crib, as I type.. and hopefully she's remembering how to close her eyes. We feel bad for her.  Last night, she had peaked fevers.  103.8, and we were giving her motrin & tylenol, even a cool bath.  Nothing was working.  This 'parenting' thing can be very frustrating!

I got to sleep a few hours.  We tried everything.

After another high temp this morning, 103.7.. we took her back to the pediatrician (we were there yesterday too).. and found out today, she indeed has a bacterial infection.

Deep sigh!! I think it's really because of the gtube area.. soo our #1 goal is to get that cleared up.  We've been complaining about the leakage for months now.. I'm very upset it's still leaking & is red around.. it's not a contact dermatitis.. it's infected!!

I know being a parent, we will get frustrated sometimes.. but we have to be the best advocates for Gracie..because she really can't tell us what's wrong! I'm sad that it has taken us this long to really figure this out.  Sad even more, is how much of her medicine or feeds, is she really getting via the gtube if it's leaking soo much??!

On the good news of things.. Gracie is still taking a bottle a few times a day..

and with practice she has taken 8-18ml's daily.  We also tried sweet potatoe this week,

and I bought jarred bananas for her to try :).

Thanks for keeping us in your prayers.

We appreciate it!

I'll post tomorrow after our GI appointment!

Love,

pattie & gary, Gracie & max