Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Sunday, June 3, 2012

ONE ROCKS!!!

Well ladies and gentlemen...we made it.  Xavier is ONE!!  When we got his diagnosis, this was not even in the realm of possibilities.  The first birthday is a huge deal for any parent..but the parents of a heart kid..it is HUGE!!  And we plan on celebrating HUGE...we already had a party in PA with my family.  We have a NJ party planned in June and a MA party planned in July..that's right..three months of parties!!


First, first birthday cake!!

I am not so sure about this BIG Mickey...

NOPE..I DO NOT like this BIG Mickey!

Now..WHAT is this??

YUCK!!

FOR ME??
 What a great card!!!

As we celebrated Xavier's first birthday we also celebrated his heart anniversary.  On June 1st is was a year since his first open heart surgery.  We celebrate and morn that day.  It was day that he was saved..the day his chest was scared and the day that I was forever changed.  I really have no idea where the strength came from that allowed me to lay him down on the big stretcher and let a team of doctors in scrubs, hair nets and masks take him away.....but we found that strength and thank God we did because we have had to do it a few more times...and we will need to do it again.

Fresh out of surgery..one year ago

It is so easy to get lost in my self pity.  I do pity myself.  I get jealous and envious of other mothers who have "normal" births and health babies.  Please don't get me wrong, I don't wish a sick baby on anyone..I just wish that Xavier's heart was healthy..and can you blame me.  I get caught up in the why me...in the worry and anxiety.  I get mad at God and question what I did or why he is punishing me.  Xavier doesn't eat and I panic, he sneezes and I panic, he coughs and I panic...so I pretty much panic ALL the time.  I cry to my mom that I can't do it.  And then I hang up the phone and I do it.  It is so easy to get lost in the sadness of HLHS...but we are so blessed and 100% stronger then we give ourselves credit for!

Xavier has always kick HLHS in the butt!!  He has always responded well to surgery. He has, for the most part, had an easy recover (with the exception of that silly air/blood in his chest).  He has never needed to be put back on bypass or the ecmo (heart/lung machine).  He has come back from both OHS with his chest closed, got off the vent pretty quickly, only had to have the NG for three months and has always had pretty good heart function.  Of course he has a leaky valve (which almost everyone that I talk to says their HLHSer  is the same) but as of now it is not causing any issues and the doctors think that the final surgery will remedy that.  He is still a little behind in gross motor skills, but cognitively he is way ahead...he is a smart cookie!  He is struggling a little with solid foods, but I am getting a ton of encouragement from other HLHS mothers who say.."Give it time" ...so that is what I will do.  I have become very patient over this past year...remind me to thank Xavier for that one too!!!

So many other little heart babies struggle so much or have lost their battle.  Some are in the hospital for months at a time.  We are blessed...so please ask God to be with the families of these little ones who are fighting for their lives....or those who have gone to heaven to play.

NOW..what can I tell you about one year old X..well he loves to play with his stacking cups.  He is currently getting his two front teeth, so he it biting everything including my chin!!!  He loves to play his bongo drums and he plays with shape blocks.  He enjoys splashing in his baby pool but only when Mommy sits in there with him (so I do).



He jumps in his jumper like he is going to take off.  He has started sleeping through the night and even putting himself to sleep.  The last few nights he has started sleeping on him tummy and even crawling in his sleep, so I think we may have a crawler on our hands.  We have noticed him putting more weight on his legs and arms.  He really only likes to eat in his highchair.  We take a walk almost everyday at the park.  He enjoys the swings and just the other day his Daddy took him down the slide.  He is now drinking whole milk.  He loves yogurt, oatmeal, chicken noodle soup, all fruits and most veggies.  He HATED his first birthday cake. Just yesterday he had a few bites of ice cream and seemed to like it.  He is a love bug and gives Mommy a ton of hugs.  He now leans in for you to kiss him.  He waves, nods his head and points.  He say mamma and dadda and means it.  He is funny and sweet and has a little attitude...He is a beautiful combination of Nate and me.  He is a warrior, a rock star and my best friend.  HAPPY BIRTHDAY XAVIER...ONE ROCKS!!!!

  Swinging at my Nana's house
  I am wearing Pappy's hat!
Have you met my Pappy?  He is pretty cool!

 I like it here...


My cousin Connor..he is awesome!

I know I am a cutie!

Xavier rocking his "One Rocks" t-shirt

HAPPY BIRTHDAY!!



This one needs NO WORDS!!!



1 comment:

  1. Happy 1st Birthday Xavier! We had a Mickey Mouse birthday party for Logan's 1st birthday too. It was such a neat reminder seeing your little guy's first birthday pics and thinking back to how I felt about my son's special day too. Turning 1 is such a big deal for our kiddos. Congrats!!

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