Celebrating 2 Years

The Fourth of July was always a fun holiday.  Camping, picnics, swimming, parties, fireworks.  But in 2011, July 4th changed.  It's not just about our country or our freedom anymore.  July 4, 2011 was the day that we were admitted to All Children's Hospital for Kennedy's open heart surgery.  It was by far one of the worst two days of my life.  I remember every moment like it was yesterday, and yet it feels like it was an eternity ago.  I remember holding my sleeping baby.  Starring blankly into the dark sky.  The extravagant display of fireworks over the St. Pete Pier.  An amazing view of fireworks all over the Tampa Bay area.  Something I would normally enjoy.  Instead, I worried about what the coming hours would mean for our family.  I feared the idea of handing over my baby to a surgical team.  My worst fear was that we would have to leave the hospital with out our little girl.  People told me she would be fine.  I read blogs.  I knew that babies made it through this surgery all the time, and that although it was a complex surgery it was one that was done often and successfully.  But none of that eased my fears.  The next day, Kennedy rocked her open heart surgery like the superstar that she is.  July 5, 2011 was the day that we started living our lives again.

Last year, we celebrate July 4th at a hotel in downtown Tampa.  We kept Kennedy up way past her bedtime to see the fireworks.  As I watched the fireworks over the Bay, with her in my arms, I celebrated that her heart was fixed, and how far we had come.  In my eyes, it was her first real Fourth of July, and nothing could ever be better.

Until this year.  This year, I knew there would be no fireworks over the Bay.  It was time to make new memories.  Time to celebrate the two year anniversary of Kennedy's heart being fixed.  We kicked off the day by taking part in a children's parade.  Afterwards the kids got to explore a real fire truck.  Later that night, we met our family and the kids played with their cousins and enjoyed the Fourth of July festivities at a local event.  As I pulled them both in their wagon, I couldn't help but think about how much has changed in the past two years.  On the night before her surgery, I couldn't imagine what another Fourth of July would be like.  Kennedy celebrated by shaking her butt and dancing to the band, for the entire crowd to see.  And when it came time for the fireworks, she sat on the blanket, occasionally hopping from person to person, gazing into the sky, pointing at each one in amazement.  Clapping and cheering all along.  Caleb stared into the sky, reaching his arm out with each explosion, trying to touch them.  There we sat, surrounded by friends and family.  My mom and my brother-in-law were there.  The same people who were there on the night of July 4, 2011.  But let me tell you, the memories were so much better this time around.  As I carried my sleeping toddler to bed last night, I cried a few tears.  She continues to amaze me every day, and she has blossomed into such an amazing little girl.

Today was another day, that I couldn't help but think back to every moment of that emotional day.  As I laid in her bed snuggling her at 6:30, I thought about how that time two years ago the surgical team was wheeling her back. And as she swung from the bars and walked the balance beam at Little Gym this morning, I thought about how two years ago I was pacing the halls, waiting for the nurse to call us with an update.  I am forever grateful to the surgeon, and entire medical team that took such amazing care of my baby on that day.

What a difference two years makes!

HAPPY HEART DAY KENNEDY!!!!

Everyone loves you so much, superstar!!! 

One Year Heart-Aversary

When I sat down to start writing this post, it was almost exactly one year ago to the minute, that we got the word Kennedy was out of surgery and was doing great.  July 5, 2011 was by far the worst and most scary day of my life.  A day that I will never forget.  I woke up at 6:30 this morning, and realized that was exactly the same time that we were watching her be wheeled to the OR last year.  Probably the hardest part of that whole day.  Handing my baby over to a team of people and just praying that she would make it through the surgery as successfully as everyone expected her to.

Everyone told me that those days would become a distant memory.  And although I didn't believe them at the time, they were right.  But I will never forget the way I felt on that day, and in the days following, as we made our way through the recovery process.

Last year we spent July 4th in the children's hospital, completing all of the pre-op requirements and prepping for surgery the next morning.  I wrote this post as I sat staring out the window of the hospital, crying in fear.  Fireworks going on all around me, but I wasn't celebrating anything.  To me, it wasn't Kennedy's first Fourth of July, although we tried to make her as festive as possible before going to the hospital.

This year we spent July 4th at a hotel downtown.  We went swimming, ate good food, and took Kennedy to the park next door to the hotel to enjoy the fireworks.  We kept her up well beyond her bed time, and later than she even wanted to be up, but it was worth it.  She enjoyed every minute of the show, despite being pretty over tired by the end.  She stared up in the sky in amazement at the colors.  It was the best Fourth of July ever.  As I watched the fireworks and watched Kennedy's face, tears streamed from my eyes.  I cannot ever express the gratitude that I have for the surgeon and the medical team at All Children's who fixed Kennedy's heart and gave us the opportunity to make all the memories that we have over the past year, and the lifetime of memories ahead of us.  After we got back to the room, Kennedy fell asleep on my lap, having her milk.  I sat there, snuggling her for about an hour, watching more fireworks from all over the area.  July 4th will forever have a new meaning in my heart.

Looking back at the photos from last year, it's hard to believe how tiny she was.  And nothing could ever erase the memories of her after surgery.  But it's harder and harder to believe, looking at her now.

Blissfully unaware of what was about to happen.

Snuggles the night before surgery.

After surgery...July 5, 2011.

  

And what a difference a year makes, here are just a few (okay maybe several) photos from our 2012 July 4th Celebration!

Come on mom, I'm ready!

Waiting (forever) for lunch, and snacking on Cheerios!  (Which she later threw in the toilet.)

Enjoying a walk on the marina.

I love hotels, you knew that right?

Dinner?  Please?  What do you mean they can't find a Kids Menu?

Okay, a new friend will hold me over for now.

Hi peeps. 

There's so many people to wave at in this hotel.

Just hanging out....

Waiting (a very long time) for fireworks!

Giving daddy kisses!

 This is fun, but how much longer mom?

Don't worry dad...I've got this.

I'm a big girl.  I stand on park benches now.

They are fun for peekaboo too!

Where did all my peekaboo people go?

Daddy spin me around again!

 ]

 I'm so tired...but those are really pretty.

Wow...

It's truly amazing the difference that one year can make in a child's life.  My husband and I, along with our friends and families are so proud of how far Kennedy has come in the past year.  

Happy One Year Heart-Aversary baby girl! We love you more than anything.

A Little Bit of Everything

Let me first start by saying, tomorrow marks the six month anniversary of Kennedy's heart surgery.  It's amazing how far we've come from that point.  By far, the worst day of my life.  But here we are, six months later, feeling as if that was an eternity ago.  I will never forget that day, but the details surrounding it, are definitely getting fuzzy in my mind.  I never thought that would be possible.  Recently someone asked me a question about her surgery and recovery, and I honestly couldn't remember.  I had to go back and reference my blog post.  Now, here we are 6 months post-op and I'm planning her first birthday party.  I'm so thankful to all of the doctors and to the surgeon who fixed her heart.  I will never forget the gratitude I felt towards the surgeon the afternoon of July 5, when he told me that her surgery was over, and a success. 

Speaking of Kennedy's first birthday, it amazes me how far we've come in the past year.  When we first got Kennedy's diagnosis, I thought Down syndrome would rule our lives.  But in reality it doesn't.  In fact, I find myself writing less and less about Down syndrome.  Today it really hit me though.  I always try to focus on what Kennedy can do, and not what she can't.  But during Early Intervention, our therapist was really pointing out everything she should be doing at her age.  And, I have to admit, it stung a little.  Kennedy IS doing amazing.  But she's also behind other kids her age.  I know she'll get there, on her own time.  But, hearing the long list of things she should be doing, but isn't, was just a reminder of how hard she works for things.  And I'm so proud of the things that she DOES do.  Even if she's not crawling on all fours, or pulling up yet.  She'll get there eventually.  However, that doesn't keep me from fighting to get her the therapy that she needs, and is eligible for.  The state of Florida seems to be the worst these days.  One month ago, after being insulted by her PT, I requested a new one.  Several follow up calls, and one month later, not only did no one request a new PT as I was told they would, but now they're telling me that despite the fact that Kennedy was approved for PT in October, they no longer will approve it.  They're making budget cuts, and based on the evaluation that was performed when she was 6 weeks old, they don't feel that she needs any additional therapies beyond Early Intervention.  WHAT?!?!?!  They're going off an eval from almost a year ago???  Of course she didn't need services at 6 weeks old!  Needless to say, I'm not done with them.  I refuse to let this go.  They will not continue to deny my child the services that she clearly needs, just because they are trying to save money.  Not. My. Problem. 

And, last but most definitely not least, my little road warrior is about to head off on another journey.  Kennedy has certainly done her share of traveling and had her share of road trips.  Thankfully she's a champ and makes the most of every journey.  It helps that she likes hotels so much.  Tomorrow's journey comes with great sadness, as my Grandfather passed away this morning.  He was a wonderful man, and will be missed greatly by all.  I have many wonderful memories with him, and I only wish that he could have met Kennedy.  He absolutely loved seeing her photos and his face lit up when we were able to video chats with him.  I'm so thankful that technology allows us to go to such lengths.  While it's not the same as meeting her in person, at least he got to experience some of the true Kennedy. 

Another Great Appointment!

I always dread cardiology appointments.  My biggest fear is that something will have changed or we'll get some sort of bad news from her ECHO, EKG, etc.  Even though everything has been going so well, I was nervous!  This was our first appointment since stopping her Lasix.  Well, everything went great!  Dr. Nardell was completely thrilled with her ECHO, her vitals, and how well she is doing overall.  There is a very minimal amount of leakage around the mitral valve, but it has improved since the last echo a month ago, and she said that it will probably continue to correct itself.  Even if it doesn't, it's not an issue.  We'll be weaning her off of her blood pressure meds, and in two weeks we'll stop them completely!  We don't even have to go back for another 2 months!

We can truly celebrate and enjoy our vacation!  That is, if Hurricane Irene lets us.

Here are some recent pictures and a video of our little miss eating rice for the first time!!

Mom!!!  Help me!  I can't figure out how to crawl!

Loving our Ergo! 

Meal Time = Play Time

Exploring rice!

 

I love when mommy gives me new food to try!