CHD Awareness Week

February 7th-14th is conginetal heart defect awareness week. In case you don't know conginetal means born with. And as many know the conginetal heart defect, CHD is what took the life of our precious Noah.

•Congenital Heart Defects are the #1 birth defect worldwide
•Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
•About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
•Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
•Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
•Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
•The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
•The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
•Though research is ongoing, at least 35 defects have now been identified
•Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
•It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

{source: itsmyheart.org}

If you know of anyone who is pregnant please encourage them to ask their hospital for a screening of their newborn called pulse oximeter - pulse ox. It's a simple non invasive test and it can save lives. It's a test that reads the baby's oxygen saturation. Sometimes heart defects go unnoticed and complications first arise when mom and baby are home and then it's usually too late.

I encourage everyone I know to please spread the word about CHD. Wear red! Remember all the angels that lost their fight against CHD, but also remember the sweet kids who are still fighting or living with a CHD.
Share some facts or share Noah's story with family/friends. Found under the label "angel Noah".

Thank you.

Happy New Year!

We made it! It's 2012. Wow, what a year we had last year. What an AMAZING, beautiful, love-filled year. But also a very sad year. I have never shed sooo many tears in my life than I did in 2011. Didn't even think it was possible.
But I really wanted to show some pictures of what we've been up to. Lucas was, once again, spoiled rotten at Christmas. But we figured with the year he has had, he so deserves it. He got a kindle fire. He kept talking about how he wanted an Ipad. Well, ain't happening, nada, nope. I think his biggest thing was that he wanted to play angry birds. Sooo..talking to a coworker a couple of weeks before Christmas she mentioned the Kindle fire. Because what also is awesome is that you can log onto the web (if you have Wi-Fi) and he loves to watch Youtube videos. He loves to find videos of Sonic, Mario brothers, Pokemon or whatever has his interest at the moment and watch them. And sometimes it helps him beat the games. Go figure. He's smarter than I am.
Here he's sitting in my bed enjoying his Kindle. And for the records, I don't want one at all. I NEVER use it after he goes to bed at night ;-)



We also have been enjoying some of Lucas's new games. A marble run..we really wanted to get him that. They had a few more sophisticated marble runs at the hospitals. During our many adventures around Children's he loved to stand and watch the marble drop. And who don't enjoy Jenga? Dwayne and I have been playing with it more than Lucas.




And today we are at home. We woke up to messy roads. Snow and ice and school was cancelled. I have some vacation days to burn so there isn't a better way than to spend the day with my favorite six year old.
We went out to clean our driveway. Not very much there but enough to make it slick.
And he was so cute. I wanted him to pose for a picture but he told me he was too busy, he was working. And he was. He did ours and he wanted to go do the neighbor's driveway as well.



I finally got him to smile for the camera. And yes, you do see our mailbox duct taped. I guess that's what happens when you have a child for almost three months in the hospital and then your husband is so behind on his work that your home is second priority. Soooo a quick fix :-)

Noah's memorial ride

Noah's memorial ride was held September 25th. This all came about when Noah was still alive. Friends of ours wanted to help out knowing the medical bills that we would incur in the years to come with the multiple surgeries Noah would need and lack of income due to being with Noah at the hospital.
After Noah passed away they still wanted to do it and what an amazing group of friends we are blessed to have.
So much money was raised and we are so excited about not only helping us but also other families in the same situation as us. We are in the early planning stages of deciding how to use the money the best. We want to really make a difference. We want Noah to leave an even LARGER footprint on this earth than he has already done.

We are hoping we can make this ride an annual event. We want to keep Noah's memory alive. He fought so, so hard and we want to always celebrate him and his life. As short and intense our journey was with him it is one I or Dwayne wouldn't be without. He taught us so much and I can't say it enough. We are so thrilled that WE were picked to be HIS parents and what an honor it is to call Noah our child. We might not get to raise him, but we'll ALWAYS have two kids. Always.

The venue was amazing. Great food, music. So many people. Many I didn't even know. But we are forever grateful that so many came out to support US.

It was so hard to leave that night, because it was a great afternoon/evening in great company.



Noah was there too!







Noah's amazing dad and I.



I had just returned from the ride. I did the short loop of 12 miles. Majority did the 30+ mile loop. Such a handsome supporter :-)



One of Noah's amazing nurses that came that day. She was also there the night Noah passed away.



I got up and said thank you and telling everyone in the crowd how awesome Noah was/IS!

So there. A few pictures from a great, great day. Thanks to my dear friend, Karen who came all the way from Virginia to be with us. Thanks Karen for keeping an eye on Lucas and taking so many awesome pictures.

Such two simple words but they have such a huge meaning behind them. Thank you.

Wordless Wednesday

Wordless Wednesday

Stealing this idea from a very dear friend :-)

What's in a name?

My inlaws were on vacation and came back with a couple of posters. One for Lucas and one for Noah. Each poster has their name on it.




Lucas

L is for laughter, with much to spare
U is for unique, way beyond compare
C is for cuddly, in a teddy bear way
A is for ace, what more can you say
S is for superb, you're sure to agree

"Lucas"
a special one is he
and sweet as can be

Noah

N is for noticeable, it's plain to see
O is for outgoing, and cute as can be
A is for awesome, tales to be told
H is for hero, courageous and bold

"Noah"
like a twinkle in his eye
he's sweet as apple pie

Going forward

Loosing Noah was like loosing a part of myself. Noah was so wanted and now we are left with such a void in our life. We had so much love for our first son, Lucas and when Noah arrived our love doubled, and we had plenty more to give away. We did get that beautiful moment of ten weeks of loving on our two sons. But now we are only left with such a void in our life.
No one will never understand this. No one will ever know what kind of pain grieving a child is really like. And it can't be explained. It's like explaining to a woman who is yet not a mother what unconditional love is. And like a good friend, Kim, of mine said that when people say to her ~ "I can't imagine what it's like loosing a child" (she also lost two sweet babies), she tells them that she hopes that they never will know what it feels like. What a perfect response. It's good you don't know what it feels like to have your heart shattered into a million pieces.
Now that I'm living this nightmare I'm trying to enjoy life again. I know Noah would want this for me.
Initially I was gonna close down this blog. This was when Noah was still in the hospital. I did not have any time for myself let alone blogging. And I knew when Noah came home that I would be a very busy mom of two.
But having said I've now choosen to keep it going. It's therapy for me to sit and write down my thoughts.
I've also tried to keep myself busy. I've had little things to look forward to and I'm trying to add new events to my social calendar.
After Noah passed away I started exercising again. I had not exercised once since Noah was born. I did not have the time, so I was logging around some extra baby pounds. Lucas learned to ride his bicycle without training wheels when Noah was hospitalized, so we have taken many family rides in the evening around town. It's been a lot of fun. But I started running. Yep, I'm running. And I'm enjoying it. When I'm out running it's just me and my thoughts. I've had some tears but also some smiles on my runs. My mind is thinking so much of Noah and our short but long journey we were on with him. I feel Noah with me so often and especially when I'm out running I feel him so much closer to me.
Sooooo...I've signed up to do my first official run. My first 5K. I'm running alongside my new friend, Patty. Patty was one of Noah's nurses, and we have a pretty special bond I would say.
Also other things I've done to deal with my grief is support I've gained from other moms going through the same thing. I HATE, absolutely HATE that we have this thing called grief in common. But I do love EVERY single friendship I've gained from this experience. Everyone I've met in the hospital to people that has been holding my hand since Noah has passed away has been so amazing to me.

So, I'll finish for now, but I'll be back. How often? I don't know. But I'll be back with a smile on my face :-)