Day 7. Hasbro Update

Grace is about the same.. they did stop the

paralyzing agent, so she can move around a little..

(her hands are restrained so she doesn't move around too much & pull anything out)..

This morning she went down to 1/2 down on the sedation medicine.

They had thought about extubating her today, but she still

has alot of secretions in her mouth, so they are waiting ..

maybe tomorrow.

 

 

Her eyes are more open today..

but sleeping/resting as well too!

We think she is trying to smile or move her mouth to talk,

but with the tube..it's hard.

 

She looks like a pin cushion..

BUT we've seen her gtube area & it has NEVER looked SOOO GOOD!!

(ever.. from the moment we got it in nov. 2011)

 

 

Thanks for all the prayers.

 

love,

pattie & gary, Grace & maxwell

Update.. Day 6 - Setback.

Setback.

Just one word..one period of 24 hours, actually maybe it was just

12 hours.. soo much can happen in a timeframe.

Grace has had a setback.

how much does a little girl have to go through in her life? Really???

 

They started feeds on her Tuesday evening..with a bolus of 4 oz at 6pm

and then starting at 10pm, they went continous of just over an ounce an hour.

Gary stayed with her, I went home for some rest & a meeting.

As the story has been told to me, around midnight Gary saw that her belly

was getting dissended (full, hard to the touch)..

he asked the nurse to call pedi surg, the nurse said well she's only get a lil over an

ounce & this is what they ordered.

Within an hour, Grace starting violently vommitting.

Her belly was too full!!

The picu team came up to try & eleviate the pressure..

she began dessating (her oxygen & heart rate started to drop).

I got called at 4 a.m., and then again at 5 a.m.

"You have to come now, she's very unpredicatably."

 

 

 

This was Tuesday evening..

 

What? Didn't I leave a smiling, happy baby that I held before I left?

She was watching TV with Mama.  We were listening to our songs. 

What in the hell happened??

 

I'm sad we are going thru this, yet AGAIN!

It's a repeat of April 2012.

 

 

Thankfully, her heart rate & oxygen stabalized.

She is in the PICU and on a ventiliator.

She is medically paralyzed & sedated (so she won't move & is comfortable)

She had to get a central line in her neck for all the connections for

the antibiotics, and the medicines.

She is on her belly, so to help her lungs clear out.

They initially thought an infection, maybe a belly leak from the new

g-tube, maybe an intestine blockage..

after 12 hours, they're saying maybe just aspirated pneumonia..

because she was coughing so much formula up, some got into her lungs.

I won't post a picture of what she looks like now, but you've just

gotten a description... you can imagine.

 

 

I had my prayer warriors out yesterday.. full of prayer!

They say prayer is so powerful..

We almost lost our baby.. (again!).. I'm not sure my faith can withhold

this.. I'll stick to the positive thoughts for Grace... and leave the praying

to the faithful and warriors.

 

 

 

What was suppossed to be preparation for taking her home

for the weekend, is now a setback.. and who knows when she's coming home.

 

 

I'm sad.  I'm bitter.

And I don't get it!

 

 

 

 

 

Thanks for keeping up..especially during this time.

Love,

pattie & gary, Grace & Max

day 4. hasbro

Grace is doing great today!!

She finally had a poop, a few actually..without anything

but a suppository!

She has no tubes on..her NG & her oxygen has been

taking off...she does have a 'blow by', it's air coming out of a hose

that sits on her chest pointed toward her face..to give her a whiff here & there.

 

 

At 3, if she remains awake..we are going to try some pediasure..

by bottle first and then whatever she doesn't take we'll give her the

rest by her new g-tube.

 

Everyone is on the same page about her feeds...she'll get 4 per day

with a continous feed at night.  And whatever she doesn't get by mouth, she

will take via g-tube.

 

We're hoping if all goes well, she will be home by the end of the week!

 

Daddy will be staying overnight tonight.. Mommy has to work her meeting.

Now that Grace is perky, and awake, it'll be good to have

one of us here.

 

 

Thanks for the warm thoughts..

a special thanks to PPPers for Grace's balloons today!!

 

 

 

Love,

pattie & gary, Grace & max

 



Day 3.. new room.

It's day 3 at Hasbro.. Grace was pretty much groggy all

day...but she's only on paid meds "as needed"..

She hasn't done much smiling today, :(  breaks my heart..

since she is such a SMILEY baby!!

 

 

We did move out of the PICU though..so a step in the

right direction.  We are in the same exact room as we were a year

ago, April.  The nurse said to me, 'ooh familiarity"..I say, "anxiety"..

We are in a 'shared' room.. there is a little baby in the next bed..who

cries alot! I just feel bad, that I can't pick her up.

So, I talk to her.. lol..

 

The surgeon is very happy with her progress.

Tomorrow they'll give her something to help with her bowel

movements.. They aren't in here, poking & prodding much..

which is good.  She really just needs to rest & heal!!

 

We're assuming she'll probably be in til the end of the week..

hopefully no more!

 

 Thanks to Auntie Dalila for visiting!! :)

Thanks to everyone who's leaving messages, and

emailing..and texting!!

Love to our PPP friends!!

 

Love,

pattie & gary, Gracie & maxwell

Surgery Update.

Grace went into surgery this morning at 9:00 a.m.

It took a little longer than they expected, because the track of the old g-tube

was really scarred and the inside of the stomach was on the outside

of the hole of the belly.  The surgeon spoke to us about 11:30 a.m.,

and said she did very well.  They had to open her up a little larger to fix the

existing g-tube hole; and then they pulled it up & put another g-tube

hole in the middle of the belly.

 

Unfortunately, Grace also had a bowel obstruction from the

scar tissue wrapping around the bowel.

So they fixed that as well.. it was a good thing we decided to do this

surgery right away, for that could've lead to a deadly infection.

 

 

Grace has been resting all day in the PICU.

We can tell she is some pain, and is getting morphine & tylenol.

She is on a little bit of 02; and was able to get extubated right after the procedure.

We thank everyone for their thoughts & prayers.

 

We anticipate that she will be here in the

hospital for the next several

days. 

 

 

We want her to get back to smiling!! We miss that!!!

 

 

Thanks for all the love!

 

love,

pattie, gary, Gracie & Maxwell

A turn of events.........

Hey, everyone.. just a quick update..

Grace got severly dehydrated Thursday afternoon through Saturday..

she actually took 8 ouces by mouth on Saturday,

and then we noticed it all leaked out of the side of her g-tube.

(that gtube has been nothing but problems for my sweet girl)

The good news is we know now, when she's really hungry she'll take that much by bottle.  Which is a plus, but not how we wanted to find out..she was starving!

 

Anyway, she is now at Hasbro Hospital, being prepped this am for Surgery today!

We ask for your positive thoughts & prayers.

The surgeon is the 'best'.. my sister works with her all the time, and comes

highly recommendable!!

The surgeon will close her current gtube location,

and place another gtube at another site on the belly.

Then we will work extra hard in the next few months to get that out.

Unlike the one she has now, the new site will close on its own once she

doesn't need it anymore.

 

 

We are doing okay.. just a little nervous (as any parents would be)

Please keep us in mind today!

I'll update you all later.

 

Thank you!

love,

pattie & gary, Grace & Maxwell

Meeting & Greeting........

We had to go to the grocery store to pick up a few things for dinner

last night..and although I didn't really want to go.. I'm glad I went.

This car was parked in front of mine, this pretty lady came out

and started walking toward Grace & I..

honestly, I thought she was going to say she hit the front of our car..

but noo it was much better than that..

Thanks to Liz, who introduced herself to us!!

Liz & I started email chat months into our 4th IVF cycle way

back in 2011..(she is the cousin of someone I know)..

It was so nice to meet her.

She was such an inspiration & comfort to me when I had the twins,

and when I was in Maine.

Thanks for being there! And for always keeping up with Grace's progress!!!

 

 

 

  We've been putting Grace into the saucer lately, and as you can see from this picture..she is doing fantastic!! She's standing in it & playing with the buttons.. soo much better than she used to.  She's not throwing her

back or head about.  She is definitely getting stronger!!

 

 

 

And today, I had the pleasure of meeting my first cousins new baby girls..

Welcome Kendall & Morgan.

Identical twin baby girls.. Kendall is over 5 lbs. & Morgan is just over 4.

Both babies are doing well & at home with Mama & Dada.

 

 

 

Lots doing.. Grace & I are going to watch my niece perform in her

gymnastics routine tomorrow..

Missing music & maybe nap..but it's okay to have one 'off' day..

Saturday back to swim class with Daddy! She did so well last week

splashing & kicking!

 

 

 

 

Thanks to all , truly..who continue to read about Grace..

and then see us out & introduce yourselves!

With all the people that read our blog, the blessings are tremendous!

 

 

Love,

pattie & gary, Gracie & Maxwell