Cycle Charity Ride Tonite at 5 & 6 pm

25
Jan

Supporting The Children’s Heart Foundation

Our First Annual Charity Ride

100% Of The Proceeds Will Be Donated

Did you know that congenital heart defects are America’s and every country’s #1 birth defect? Here’s a chance to help make a difference in the lives of Long Island families. Join us this February and ride to support this worthy cause. Click here to learn more about the Children’s Heart Foundation, and thank you for your support.

Friday, February 9th
5:00 – 5:45 PM
6:00 – 6:45 PM
$25.00 Donation Fee
Reserve Your Bike Today

Evie’s Story

On November 25, 2013, my husband and I were so excited to find out that we were expecting our second child. The weeks went by as any other pregnancy does – taking vitamins, checking the baby apps to see how big this little person was getting, and sharing our news with all of our loved ones.

At the 16 week sonogram appointment, they noticed a small spot on our baby’s heart. At this point the heart was still small to see, but it was diagnosed as an Echogenic Focus which isn’t much to worry about but can be one sign of other issues. We were relieved when those other issues were ruled out.

Four weeks later, we had another full anatomy sonogram. The technician told us we were having another girl, but also noticed something she needed to bring the doctor in for. Her aorta and pulmonary arteries were running parallel to each other when they are supposed to crisscross over the heart. The doctor confirmed that this was in fact the case and we would need to follow up with a fetal cardiologist as soon as possible. It was explained to us that what they were looking at, in our little 20 week unborn baby, was Transposition of the Great Arteries. Her aorta and pulmonary arteries were attached to the opposite areas of the heart.

Evie

After meeting with our amazing fetal/ pediatric cardiologist, Dr. Luxemberg from Pediatric Cardiology of Long Island, all of this was confirmed. He also gave us an idea of our road ahead. Without surgical intervention right after birth our baby would not survive. He explained that we were to find a high risk OB that delivers at, what used to be, LIJ in New Hyde Park so that the baby can have her surgery at Cohen’s Children’s Hospital.  He gave our number to a fetal nurse coordinator at Cohen’s who would help us make the “best plan possible”.

Our baby girl was due August 4, 2014. Our fetal nurse coordinator at Cohen’s contacted us on a beautiful spring day in March. We set up a fetal echocardiogram, which we would go for every few weeks there, and a meeting with our surgeon, Dr. Vincent Parnell, MD. He explained that our baby would need open heart surgery shortly after being born. During this surgery she would be put on a bypass machine while they cut and reattached her vessels to the correct areas of the heart. Without this surgery, oxygenated blood would never circulate to the rest of her body. It would cycle back and forth from the heart to the lungs only.

 

As time went on we scheduled an induction for the 29th of July. This way they could somewhat control the situation. We also made arrangements to stay at the Ronald McDonald House right next door since we live an hour away. Our baby’s birth was a very long process and didn’t actually occur until 2:12 pm on July 30th. Just as soon as she arrived on this earth, she was taken away to be attached to many machines. We named her Eve.

Evie

The doctors were pretty confident that waiting a few days to do the surgery would be best. We weren’t able to hold her until her 4th day, when they prepared her for surgery. This was, by far, the scariest, most emotional, day of our lives. The surgery took 6 hours. The doctor’s assistant came out and told us they were closing her up and the surgeon would be out soon to speak with us. When he did he explained that all went well, so far he was very happy with the results, and she needed 2 blood transfusions. TWO BLOOD TRANSFUSIONS AT 4 DAYS OLD!

A few hours later we were able to see our Evie. She looked terrible – bruising already, tubes everywhere, and her eyes taped shut. It didn’t last long though! By that evening they were already removing tubes, and every day more came out, she responded more, and then she finally cried for the first time. She was so tough for such a little thing.

We stayed a period of two and a half weeks. Many other children with CHDs have issues where they have to stay much longer, or come back for multiple surgeries. We were lucky that it was a “simple switch” procedure.

Now, Evie is a three and a half year old FIRECRACKER! She’s tough as nails, and enjoying this beautiful life thanks to everyone involved in her care! We have check-ups with our cardiologist regularly, but less than we used to. She has had some immunity issues, and may need to have a procedure soon to correct some tightening of the reattached areas of her pulmonary arteries. So far, it doesn’t look like an open heart procedure, but laparoscopic.

Evie

We are so incredibly thankful for all of the support from our friends, family, and all of the staff at “LIJ”, Cohen’s, and the Ronald McDonald House organization. We do a lot of charity work to spread awareness of CHDs, and to raise money to aid in the advancements of scientific research to continue to discover new ways to detect and help those individuals affected. Eve’s surgery, of a transposition switch, wasn’t tried until 1986. Before that time this was a fatal diagnosis.

Though our story has been triumphant this far, there are many other children, and adults, who have been affected. Some have not had the success we have had. There are children struggling day to day to live “in the norm”, and there are those who have lost their battle. We always keep them in our thoughts and prayers, and are thankful every day for our beautiful warrior, Evie.