Daddy's Surprise Visit

Last Monday Sophia Lynette was stable enough to return to her room.  She's no longer in the PICU and is doing well.  A couple of days later, Jeremiah decided to pop in for a surprise visit and Sophia LOVED it!    

 

She was just cooing away.

 He was having fun, too.  

Look at her looking like her daddy.

Jeremiah walked away and she was still smiling and following his voice.  It was a good day!

Drama & Excitement

The Drama

Toward the end of the week, I walked in and found Sophia chillin'!  The nurse said that she had a great night and that was my cue to swoon in and start our playdate.  At the end of our visit...

 I pulled this...

 ...out of this.

The girl has so many things going in and out of her it is ridiculous.  Three of us were in the process of putting her back in her crib because it was time for me to leave.  Some kind of way, we lost focus of the g-button cord and it got caught on the chair and I accidently pulled it out when I stood up.  Baby was not happy.  The nurses say that it happens all of the time and I shouldn't feel bad.  They also said that the older kids just pop it back in.  Apparently, it really is no big deal.  I still can't believe that I was the source of her pain :o(  

A new g-button was ordered and peace was been restored.  Unfortunately, she still has to be fed through her stomach.  My goal is for her to start speech therapy by the end of the week.  Hopefully, we can start introducing her to solids.  We probably won't even bother trying to bottle feed her because she is 8 1/2 months old.  It's kind of silly to introduce her to the bottle only to take her off of it and then introduce her to solids.  So, we're starting with solids.

The Excitement

At the beginning of the week Sophia Lynette and I had a GREAT day!  I was feeling adventurous and decided to sit her up in her boppy to see what would happen.  She did great!  She can't sit up on her own without the support of the boppy.  Anyway, she never lost her breath and she did great!  She fell forward a few times but I kept sitting her up and she liked it.  Plus, she had really good neck control.  Look at her!  I was STOKED!!!  I kept trying to get a picture of her smiling but she always stopped right when I snapped.  

So here's the thing.  Sometimes one eye is crossed and sometimes the other eye is crossed.  The nurse practitioner said that she's probably not cross eyed.  More than likely baby is using one eye at a time to focus.  Eventually, she'll have to see an optometrist and they can decide if some type of therapy will be necessary.  For now, she's not too worried about it.  As for me, I'll rejoice in the fact that she is sitting up.  Then again, she is on a course of steroids.  All of this activity could be the steroids working and not her.  Whatever the case may be, she's sitting up and I am one proud mama!

Then she was getting tired and started falling asleep.  I finally put her down for a well deserved nap :o)  After spending two weeks in the PICU, she is stable enough to go back to her room in the TCU tomorrow, yay!

Demoted To PICU

10/8/12
I arrived to visit Sophia Lynette.  Apparently, she had just had an episode and the staff was trying to calm her down and stabilize her.  In my effort to help, I held her for a couple of hours and she did great.  At 8:15PM in the middle of dinner the hospital called.  Baby isn't doing so well anymore.  Her CO2 level rose to 94.  Her normal range is in the mid 50's to low 60's.  They decided to transfer baby to the PICU.  She's too big and too old to go back to the NICU.

10/9/12
I arrived and walked into this.  A million tubes and wires.  Her air sacs became constricted and she had a hard time breathing.  They administered continuous breathing treatments overnight to keep her sacs open.    She was not exchanging gases well.  Her speech, physical, and occupational therapists were suppose to finally start working with her today.  That's now on hold.  Sigh.

She got so feisty that the nurse had to find a way to keep her arms down.

10/11/12
At 4PM baby is stable enough to return to her room in the TCU, yay!  Not so fast.

10/12/12
I decided to go to the gym.  I can't ask Sophia to get better and stronger if I'm not doing it myself.  Anyway, in the middle of my sculpt class, the doctor called.  Sophia's CO2 is 84.  She's agitated and was given some drugs to calm her down.  She started a steroid regime and hopefully, her air sacs will open up again.  Things sounded under control so I finished my workout.  I got the girls to my parents house and I was off to the hospital.  The doctor called as I was putting the van into park at the hospital.  Sophia's CO2 is 107!  The doctor is sending her back to the PICU at 1PM.  I literally sprinted to her room.  She was working WAY to hard for every breath.  Her sweat beads were the size of marbles.  She was a mess and she looked it.  I was able to walk with her to the PICU and help her get settled.  Basically, a lot of medical stuff took place and Sophia's lungs sounded and looked better.  After a few hours, she was stable and I felt comfortable enough to leave.  I HATED to leave her.  I hope the weekend is a little bit quieter.  Who am I kidding.  Nothing is quiet about this baby!!!

TCU Reunion

Every year the children's hospital has a TCU Reunion.  The reunion is for any kiddo that has been admitted/discharged from the TCU.  It's family oriented and there was tons of food and activities for the girls.  Last Saturday we packed up the girls and braved the 54 degree weather!

This was the coolest game of Connect Four that I have ever seen.  Look how big it is!

 There were so many versions of tic-tac-toe.

Scarlett started lining up the animals from the tic-tac-toe game.  I guess she was ready to do something else.

When we first arrived, Scarlett and Savannah received a booklet.  Liz didn't want one.  We tried to encourage her to get one but she was not interested.  When you won a game, you received a sticker to place in the booklet.  The more stickers you have, the more stuffed animals you got.  After seeing the girls having so much fun, Liz wanted a book.  Go figure.  She came home with a few stuffed animals and she was so proud of herself.

Ah.  Grab your tissue.  I really don't know how but I just stumbled upon this place.  Remember back in August when we thought Sophia was going to die?  All I wanted to do was take her outside so that she could experience life outside of the hospital.  Apparently, a couple of the nurses thought it would be nice to take Sophia to the labyrinth.  They told me about it but I've never seen it until last Saturday.  Now I understand why the nurses thought that the labyrinth would be the perfect place for us to take Sophia.  It really is a beautiful place and this picture does not do it justice.  Those are fountains in the middle and it was so peaceful and tranquil.  I didn't walk it because I want Sophia and I to do it together...in the real little red wagon!  One day baby girl.  One day.

Instead of a cake walk there was a book walk.

Then we headed in to see Miss. Sophia Lynette.  I can't remember what Savannah was doing but she sure was cute and very loud.

We came home with so much stuff!  We even hit up the cotton candy booth one more time for the road.  I couldn't believe how good it was.  As far as I'm concerned, this was in lieu of our state fair trip!

She can sure cut those eyes can't she?!?!

Being silly like her daddy.

 Savannah couldn't get enough of Sophia.  She kept kissing her and holding her hand.  It was so sweet.

 We finally wore Sophia out and that was our cue to head home.  It was a good day!

A Great Visit

Some days I'm fine.  Some days I'm over everything.  Some days I'm emotional.  Today, I was just alright.  When I arrived at the hospital, I didn't want to be Sophia Lynette's caregiver, advocate, or cheerleader.  I just wanted to be her mom.  

Just as I was walking in her room, she was waking up from her nap.  She was smiling and was so happy and so alert.  I took full advantage of her good mood!  We sang nursery rhymes and exercised and had an impromptu photo shoot!  She was awake for 15 or 20 minutes and it was glorious!  I think she had fun, too!  Today, I needed her more than she needed me.  Is it okay to feel like that?  I held her afterwards and she was fast asleep.  Thank you for a great visit baby girl!

Randomness To Remember

These are some random pictures that I've taken over the last two weeks.  Some days have been better than others.  However, the really good days have been really good!

This was a not so good day.  Savannah was using a toy bus to climb up on the end table.  The table won.  The bus got away from her and she split her lip on the table.  There was a cut underneath her lip, too.  It was so bad that the inside of her mouth was bruised.  This was moments after the incident.  When she woke up the next morning, it was much worse.  She's all healed up now.

I love to pick Scarlett up from school.  She always get so excited and I love it!  She'll jump up and down, point to me and yell "my mommy's here", "that's my mommy", or "mommy, mommy, mommy!"

The closer I get to her, the more excited she gets.  It's SO darn cute and I LOVE it!  I'm glad that she loves me so much.

One day I went to my parents house to pick up the girls and I found Savannah sleeping like this. 

She was passed out and wouldn't move for anything.

Naturally, Scarlett wanted her picture taken, too.

Jeremiah graduated college and finally has a degree in IT!  Then he quit his job.  Not to worry, he has another job that he'll be starting on Monday...at the hospital where Sophia is!  He'll be a business analyst and he's excited about his new opportunity.  He was at his previous company for nine years and had several positions.  He left as a Sr. Systems Administrator.

The first six weeks is over and that meant report cards were sent home.  Liz made all A's except in math where she made an 82.  Not bad for all Pre-AP classes.  Well, reading is not a Pre-AP class because it wasn't offered as a Pre-AP class.  Anyway, she still did great and we're proud of her.  We went to TGI Friday's to celebrate her success!

The tornado still haunts me.  I've been opening all of the windows because it's been so nice outside lately.  The tree in the background was damaged pretty badly.  It was so stressed that the leaves fell off of it shortly after the tornado. I use to love hearing the leaves rustle whenever the master bedroom window was open.  I use to love seeing the morning sun peek through the leaves on that tree.  Now, I hear nothing and the sun hits our window full blast.  The tree in the foreground is still healthy and I can hear those leaves through the kitchen window.  It just sounds so different around here.  Thank you tornado :o(

A lot of us lost several trees and it looks and sounds so different in our neighborhood.  Hopefully, the leaves will come back next year.  If they don't, Jeremiah and I will have to discuss on what to do with the tree.  At least we have new fences.