Monday, December 31, 2012

Christmas Parties

As tradition would have it, we attended our annual Christmas party at church.  We were late and then we left early.  Liz had a sleep over and had to be at someone's house the same time that the party started.  Anyway, I  made sure that we were at the front of the Santa line because there were a lot of kids and I didn't want to wait too long for the girls picture.

Savannah didn't want anything to do with Santa.  Jeremiah went with her and he couldn't believe that Santa was "real".

Scarlett had her Christmas party at school and the siblings and parents were invited.  It was a great day and the girls had so much fun.  

This is Mason.  Apparently, he has a serious crush on Scarlett...and...he's a bad boy.  Every week I hear something about how Mason got in trouble for something.  However, he's always nice to Scarlett.  Maybe she'll be able to tame this wild beast.

This is Scarlett's class but I think some of them are missing.

Still not sure of this Santa business.

Scarlett's teacher gave a gift to all of her students AND their siblings.  How sweet was that?!  She even thought of Sophia Lynette and gave her this bear.

Wednesday, December 26, 2012

Monday, December 24, 2012

Sophia's Week In Review

Sophia had a very busy week last week!  Some days were fun and some days were all business.  Here's what's been happening.

I heard that the Dallas Cowboys were in the PICU.  Before I knew it, DeMarcus Ware, #34, appears out of nowhere.  He visited the boy next door.  He visited the boy across the way.  Then he left.  Did he just skip us?!  Clearly we've been here long enough for me to see how things operate.  My thought was that DeMarcus/ the Cowboys PR team, visited the boys because they were older and were boys.  Sophia is a girl and a baby.  I was slightly disappointed but it wasn't a big deal.  After all, the child life specialist circled back around and gave us this sock.  She said that the Cowboys left it for us.

It was loaded with all kinds of memorabilia.  The Rangers came the Friday before but I had already left.  They left some memorabilia, too.

I love her silly faces!

She started to get tired from all of the activities.

Moments after she arrived back from surgery.  Her surgeon said that everything went well and there were no complications.  As for the cyst that was removed?  BENIGN!!!  Merry Christmas to us!

Her blood pressure has been high since surgery.  I'm really hoping it's a post-op issue and won't be long term.  As a result, the nephrology (blood pressure) team is following her.

The next day it was time for more physical therapy.  It took three PT's to help Sophia Lynette STAND UP!!!  That's right.  Baby girl was working on putting weight on her legs and feet.  The best part is that she tolerated it.

2 hours later...
Santa Claus came to visit.  Baby was clearly tired and Santa was so patient.  For a minute, I thought he was a real Santa.  He had the walk, the voice, the laugh, and the look.  And, that is his real hair! 

Sophia now has two teeth on the bottom.

She also has one tooth on the top.  It's nice to enjoy her precious baby moments.

Monday, December 17, 2012

Surgery #7

Sophia is having her 7th surgery tomorrow.  She's having a dermoid cyst removed and a mediport implanted.

The Dermoid Cyst
A dermoid cyst has been growing rapidly on her forehead since September.  Her surgeon said that they remove them all of the time.  He also said that surgery wasn't urgent and he would remove it before Sophia went home.  I didn't expect it to be removed so soon.

The Mediport
In the meantime, she got sick and needed an IV.  For some reason, the nurses have a difficult time finding a vein.  When they find a vein, they stick Sophia and the vein moves or blows.  They even used a sonogram machine to find a nice vein.  They find a vein, stick her, and the vein moves or blows again.  A couple of times some of the nurses would chase a vein and Sophia was not happy.  There has been two people that have conquered Sophia and has gotten an IV in.  The problem?  Her veins blew in two or three days and they started the search for a vein all over again. 

 At the top of her arm is a bruise from a failed attempt.  The red dot underneath the bruise was a great IV but it went bad in a couple of days.  The bruise underneath her arm was a nice IV, too.  It also went bad.

They moved to her right arm.  After five or six failed attempts over two days or so, everyone decided to stop torturing her and let her rest.

Depending on the day, Sophia needs several drugs at a time.  They best way to give them to her is through an IV.  Without an IV, she gets poked every time.  Or, her meds go through her g-button in her belly but that isn't as effective as having an IV.  

Last week the PICU doctor proposed that they implant a mediport in Sophia.  Apparently, the mediport is a device that is surgically implanted and used to administer drugs and withdraw blood.  It provides long term IV access and should prevent Sophia from being poked so many times.  

I found this image online of a mediport and how it works.

The mediport became a priority because Sophia can't continue to be poked endlessly and she frequently needs an IV.  Since she's going into surgery, they might as well remove her cyst, too.  The procedures don't worry me.  Post-op does.  She always struggle after surgery and I'm somewhat nervous about her recovery.  Tests will be run on the cyst and I'm hoping everything will come back negative.  For now, I just want to focus on tomorrow.

Sunday, December 16, 2012

Happy Birthday Savannah

On 12/12/12 we celebrated Savannah Camille's 2nd birthday!  Just like everyone else this year, she didn't get a party either.  Hopefully, I'll be in a mood to throw parties next year.  Jeremiah baked AND iced her cake.  It was just us and it was a great evening.  My favorite thing about Savannah is that she is so loveable one minute and then so mean the next.  Usually, she's pretty good at eating everything on her plate.  I never have to worry about her diet because she'll eat almost anything.  Oh, and I love that she and Scarlett fight over who's going to bless the food at mealtimes and say the prayer at bed time.  At least their fighting for a good cause, right? I love her curly hair and she has the cutest smile.  She's 70th percentile for weight and 20th percentile for height.  She's a whole lot of love and we love her so much!  Happy birthday mama!!!

Friday, December 14, 2012

Amateur Christmas Pics

Last week the PICU child life specialist wanted to know if we would be interested in having our pictures taken by a professional photographer.  I told her sure, why not.  Apparently, there are several photographers that donate their time and services to families in the hospital.  Later I found out that you had to meet a certain criteria.  #1, you won't be home for Christmas.  #2, you haven't been home.  #3, you've been in the hospital for a while.  I guess ten months constitute a "while".

December 10th was picture day!  The nurse and I kept going back and forth on whether or not we should drug Sophia.  Our concern was that she would get worked up because of the excitement and started having respiratory issues.  If she were sedated a little more, she would last long enough to get through the shoot.  Don't judge.  If you saw Sophia in full diva mode you would think about drugging her, too!  Anyway, at the end I decided against the drugs.  She had had a great day so far and was feeling so much better.  I took my chances and baby girl did great.  When the photographer showed up, I put Sophia's dress on and the fun began!  

The pictures below are the one's from my personal camera.  The photographer is going to supply me with a cd of the images that he took.  We had a little fun taking pics before and after he left.

Oppa Gangnam style!

 She opened her eyes for a moment and it was nice.

What?!  I got a smile, too!

This is one my favorites.

Just enjoying her :o)

Sophia Is Sick

The morning of December 3rd I get a call from the hospital.  Sophia is not doing well and they are taking her to the PICU.  She was having difficulty breathing and her CO2 was 117.  For her, 45-55 is acceptable.  Once again, I rush the girls to my parents house and head to the hospital.  There were so many people in her room and I couldn't even get to Sophia.  I could see that she was breathing hard, sweating, and crying so hard that I could hear it through her trach.  When I made eye contact with the doctor, I asked her what happened.  Apparently, Sophia caught a virus and isn't fighting it so well.  She was given a synagis shot, steroids, and breathing treatments and nothing was working.  Because her lungs are already comprised, she doesn't have much reserve to fight off anything.  Now, we ride it out until she feels better.  After a few hours, things settled down and baby girl was comfortable.  I got her all cleaned up and prayed that she didn't get any worse.

I always take a ton of pictures of Sophia but I rarely get a video.  This was a few hours after we got her settled and calmed down.


11/30/12 was Jeremiah's Christmas party at work.  The entertainment was karaoke and he signed us up!  I don't mind speaking in front of people but singing is another story.  I was so nervous but I went with it.  We haven't had that much fun in months and I'm so glad that we went.  

Jeremiah started the party with "I'm Too Sexy" by Right Said Fred.  It was SO funny and pretty darn good once he found his stride.  I wish I'd kept recording but I stopped recording to enjoy it.  It was so funny and much better in person.  The :20 mark is my favorite.

Then it was our turn.  We sang Al Green's "Lets Stay Together".  

I don't know who recorded this but I'm glad that they did.  Everyone posted videos and pictures on the shared drive at work and Jeremiah found this clip.  Check out the :25 mark.  I can't believe I hit that note!  We received a standing ovation and won the cutest couple award, yay!

Jeremiah performed a Spanish song by himself.  People weren't into it at first but by the end, he won the crowd over.  

Thursday, December 13, 2012

Gingerbread Man

Savannah slammed my laptop close and broke the screen a week ago.  Really?!  I've had it less than three months, too.  I am so behind on blogging and I'm doing my best to catch up.  He ordered a new screen and I'm back in business!

On Novemember 28th, the child life specialist at the hospital brought us a gingerbread man.  I decided to make it a family activity and it was so much fun.  I couldn't find the icing to save my life.  We ended up using the icing from a pumpkin bread mix.  Later that night I finally found the icing.  It was in the bottom of Sophia Lynette's diaper bag.  I wished we would've used it because it was white and the gingerbread man would've looked much better.

Jeremiah only agreed to participate because I agreed to let him stab the gingerbread man once we were done.  Honestly, I forgot that I told him he could stab the thing until he did it.