CHD Awareness Week Feb-7-14 ( Foto Finish Friday)

Chloe's first Picture 11/22/2006

Chloe Today 02/13/2009

So today for my Foto Finish Friday it isn't going to be my traditional post. This is something that is very important to our family as well as friends. Something that will touch every American in the United States at some point in time in your life.

I can promise you that at some point you have stood in line next to someone at the bank, or the mall. Really anywhere for that matter that has a Congenital Heart Defect.

Our special Children with even more special hearts are born every day. They come from all backgrounds in all shapes, sizes and colors.

Today is the second to the last day of Congenital Heart Defect Awareness Week. Tomorrow is Valentines Days a day that is celebrated by all. Our house we celebrate the fact that our baby who was born with a very special heart. She is one of the lucky ones who to this day has not had any problems who's heart remains special and full of holes. So many lives are lost each and every day babies just like Chloe with Special hearts.

Take a moment and pray for all our special babies and their special hearts today and tomorrow on this national heart day.

Don't forget to check out Candid Carrie for other Foto Finish Friday participants!

http://carriestuckmann.blogspot.com/

Until Next Time,

Heart MOM

PS. Here is an article I found on CHD Awareness please check it out!


(Philadelphia, PA) - Valentine's Day and hearts are eternally linked. A group of dedicated parents, patients, family members and friends, along with doctors, nurses and social workers are hoping an annual "heart" holiday will help them raise awareness about the most common birth defect in the United States–congenital heart defects.
State and local government officials will proclaim Feb. 7-14, 2009 as "Congenital Heart Defect Awareness Week."
Jeanne Imperati of Connecticut, herself the mother of a child with a congenital heart defect, in 1999 conceived the idea for an annual awareness day to reduce childhood deaths, and increase funding to support congenital heart defect related causes and cures.
An estimated one in every 100 children born in the United States each year have a malformed heart, making it the most common birth defect. "Few people realize more babies are born with congenital heart defects – approximately 40,000 – than with Spina Bifida, Down's syndrome and hearing loss. Yet, heart defects are sometimes overlooked and not routinely diagnosed in newborns."
"An untold number of children and young adults are put at risk each year due to a lack of early screening for heart defects and childhood onset heart disease," said Mona Barmash of Philadelphia, Penn., the founder of the Congenital Heart Information Network (CHIN), which sponsors the national awareness day.
C.H.I.N. (tchin.org) was launched in 1996 as an international non-profit organization that provides reliable information, support services and resources to families of children with congenital and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. The all-volunteer member-supported organization publishes http://www.tchin.org/, which receives thousands of visitors from throughout the world every day.
"Valentine's Day is the perfect time to bring families, health professionals, and local organizations together, and to draw attention to the needs of the congenital heart community," said Barmash, who is the mother of a young adult with complex CHD. "For parents and families of kids and adults with heart defects, February 14th means hope and remembrance.
Local coordinators nationwide are planning activities in recognition of Congenital Heart Defect Awareness Week 2009. For more information on what's happening visit http://tchin.org/aware/index.htm, or call (215) 627-4034.

Boots

Sweet Baby Girl your almost 2 I cant even believe it.

Two days ago was the 2 year anniversary of my goal due date. And to think we made it 13 extra days!

Thinking back on everything from the long almost 9 months you were in my tummy. I was so sick and from the very start I couldn't wait for it to be over. Until the day the doctors started to worry about you.

You were extra small and not moving much. There were so many questions being asked and yet no answers being given. Each and everyday that went by we prayed for you. At 21 weeks and 4 days we found out that you were a girl. While I was so excited to be having another girl the doctors kept measuring you over and over again to figure out why you were only measuring at 16 weeks. This doctor wasn't our normal doctor and she wasn't able to say a word about what she was finding. The famous "Hmmmm" we kept hearing for many months after. I still cringe every time someone does it.

Every test under the sun was ran that day. We were hopeful that somewhere down the line we had a history of "small" babies and prayed that genetics were playing a part for you.

This was the day your Big Brother Avery named you boots!

A few weeks later I found out that I had gestational diabetes. From that moment on I ate everything that I was supposed to and made sure my sugars were perfect. I gave up my love of pasta and bread in hopes that you would be okay.

Shortly after that I was going in three times a week so they could check up on you. Make sure you were moving like a crazy girl and growing just right. On Thursday September 21 2006 the sweet nurses at Material Fetal Medicine decided to keep monitoring me for a few more minutes while they finished some paperwork. Not even two minutes later your heart rate dropped.

I don't think I have ever been so scared in my life. Your daddy was working late that night and Your Big Brother and Sister were at a friends house. As they were searching for your heart beat and having me move a million different directions then the Marie one of sweetest nurses I have ever met ran out of the room and the on call Doctor ran back in. When she came back into the room her face was white and the smile that was always upon her face was no longer there.

She walked over to my left side and held my hand. Handed me a tissue and told me everything was going to be okay. They still hadn't found your heart beat and you weren't moving. It had been 3 long minutes. I was being transferred over to the labor and delivery floor. Nothing was being said I had no idea if you were okay.

Just before they started to wheel me out of the room. You moved! The plan was to see how you do for the next few hours and if it happened again then they September 21, 2006 would be your Birthday. You would have been way to early more than 2 months early. Over the next 15 hours you did just fine. Our wonderful doctor came in and that is when we set our plan. She even had a little heart to heart talk with you. You were to stay healthy and strong until November 9th and I was to stay pregnant until then.

We had weekly ultrasounds and we sat in that very chair that were we almost lost you 3 times a week.

I prayed every single day that we would make it to November 9th.

Grandma had a shower for us on October 14 I only had two bites of that Oh so very tasty Chocolate Cheese Cake. I was sure you wouldn't mind something non organic and sweet to eat. We all laughed and talked about everything but the worry we had for you.

I figured that if I didn't pick up your bedding or have everything ready you wouldn't come until we were. Everything stayed in bags and boxes that people gave you at the shower. We had your butterfly bedding picked out, but I wasn't going to buy it until November 8th.

November 9th we were all ready for you to come. I went to see the doctor and you looked just fine so it was now a waiting game. Were you going to come soon or would you wait until what I like to call "D" day.

On November 22, 2006 at 6am your Daddy and I walked through the empty parking lot of Evergreen Hospital knowing that in a few short hours we would be meeting you. Not only that your Big Brother I think was more excited than we were. He was going to meet his Boots!

Everyone showed up at the hospital about 30 minutes before you were born. Avery couldn't figure out why you weren't out yet. Bella was being Bella and had no clue as to what was going on.

At about 12:40 your Brother and Sister took a stroll to the gift shop to pick up their Big Brother and Big Sister T-Shirts. At 12:52pm you were born weighing 7 pounds 9 ounces and 19 1/2 inches long. You were Perfect!

Even though you were small to us but normal size to Doctors. We figured you were okay now that you were here.

Your Big Brother held you minutes after you were born. He cried and told you how much he loved you and how he waited so long to meet you. Your Big Sister really wasn't too sure about you, but that didn't stop her from petting you while Avery held you.

Later that day after everyone went home. Avery decided to stay with us in the Hospital just in case you needed him. I remember looking at you next to me you were so sweet and so little. You had the most perfect little lips and those oh so kissable cheeks. You had a tiny bit of blond fuzz on your head and we were almost 99.9% sure your eyes were blue. You wouldn't keep your eyes open long enough for us to see.

Your lips kept turning blue our nurse Liz kept telling me to keep your hat on that you were just cold. I couldn't help it that blond hair was just too sweet! We had no idea that your blue lips were just the start of everything that was going to come.

I didn't get much sleep that night I couldn't take my eyes off you. We waited so long for this day Chloe a day we thought that might never come....

Until Next Time,
Just MOM

Check back tomorrow for the more of the Chloe story.