Thursday, November 8, 2012

Jan/Feb issue

I have received information from the editor of NOLA baby and family magazine that they are going to publish Olivia's story in  their Jan/Feb issue. I am so excited!!!!!! They want to make it her story with the emotions and journey and have two sidebars with statistics and information. They are going to make it 1 1/2 pages long and have pictures of our sweet girl too. I am over the moon that we can help raise awareness and spread Olivia's story.

Olivia's 1 year portraits

We got the proofs back from Olivia's modeling session, HAHA. I wanted to put the link up so everyone could view all of them. They came out fabulously thanks to Ashley Bel.

http://ashleybelphotography.instaproofs.com/

Thursday, November 1, 2012

Our baby is growing up

   Today marks Olivia's first birthday. This day has been one I have looked forward to and hoped for since early July 2011. Could we do it? Could we protect her and speak up for her when she needed it? Well, I'm happy to say we DID.
    My sweet Olivia, you have taught me not only how to be a better mother, but also how to look fear in the face and conquer it. Everyday I see you, I see something new. Looking at your scars, I see healing and forgiveness. Looking at your eyes, I see honesty and truth. Looking at your smile, I see love and laughter. Overall, I see a million possibilities of what can be.
   I look forward to watching you grow and standing up for you when you need me. I can not express how grateful I am for you. I can not tell you how different life would be without you. You are perfectly imperfect. It is an honor to be called your mother. Happy birthday sweet potato pie.



Climbing the mountain: 1st Birthday Overlook

1 year of so many unfathomable emotions, experiences, memories, up and downs have gone past us by.  Olivia has survived her first year.   She keeps crushing all the goals we set for her: get past her Norwood, survive interstage, get past Glenn, survive to 1st birthday.  I feel like with Olivia we just have to take it a year at a time.  Riding in the car with Melanie this morning, with Olivia giggling in the back, I said "now let's make it to her 2nd birthday!"  She's gotten the best care from so many doctors in Philly and Louisiana, we are giving her every chance possible to thrive and surpass our biggest goal for her; be completely happy and to live long past Melanie and I. 

Looking back through the year besides loving the heck out of each of our kids, the biggest feeling I have had is helplessness.  I am helpless because I feel that any day or night Olivia could have a huge setback and never recover from it.  She isn't a ticking time bomb, but gradually changes can happen and things might get overlooked.  We really don't know her true current status unless she was getting echo's, and cardiac mri's every week.  The doctors say she looks great, and is a model HLHS baby.  In the back of my mind there is always the constant worry and doubt.

I am a year older as well, with a good bit more grey hair, but a completely different perspective on life.  A year and a half ago I was so carefree, and living it up.  I had a few hobbies I was very passionate about, like fantasy football or being a crazy Saints fan.  Before if I missed a quarter of the Saints game I'd be freaking out, now it doesn't matter.  Now I'm just cherishing every minute I have with my children and family.  I find that the things that were important to me then are very trivial now.  It might sound sad, but I feel like the happiest guy alive.  I have my wife and 3 beautiful children and Olivia just turned 1.  Nothing in life is better than this. I feel vain talking about myself on Olivia's birthday but I was hoping to frame how I have felt this year, and just how exciting this milestone is. Today is the biggest day of our families' year because we have made it.

The year ahead will probably be more of the same feelings, with tons of doctors appointments, a trip to Philly, a hospital stay or three.  I have no idea, but my goal for Olivia is to make it without needing the 3rd surgery.  Hopefully, that can wait until next year or the year after.  Possibly after her 3rd surgery we won't have all of these short-term goals, and we can just focus on being a little more normal.  I know Olivia will never be normal, but hopefully the Fontan flow will work with her body and allow her to live a long happy life without needing any extra surgeries or a transplant.  My fingers are crossed! 

Happy Birthday my sweet little princess Olivia.  You are a true Xena warrior heart princess and we are very proud of how far you have come and will go.