Nick's Story

Hi, all. So as you know by now, Nick is having open heart surgery to replace a valve on Thursday, August 16th. We've known for years that this day was coming and it's finally here. Many of you don't know Nick's story, so that's where I'll start with this blog.

Nick was born Sept. 16th, 2001, just 5 days after the 9/11 tragedy. With so much going on in the world, it was amazing that our prayers were heard and our little baby boy was given the miracle of life. He was born with Critical Aortic Stenosis, a condition where the aortic valve (the valve in charge of pushing oxygenated blood out into the body) is too tight and not enough blood can get through. We had no idea about this condition until he was a day old. He was transferred from St. John's Hospital in Santa Monica to Childrens Hospital Los Angeles (where Jeannette coincidentally had been working as a fundraiser since the previous December) where he was a patient in the CardioThoracic Intesive Care Unit (CTICU) to get him healthy enough to even survive a surgery, as his organs were already beginning to fail.

When he was 5 days old, Nick underwent his first surgery, which somewhat opened up the valve to allow for more blood to go through and begin getting him healthier for his next surgery which would actually correct the situation. 7 weeks later Nick underwent his 2nd surgery, known as the Ross Procedure. This procedure is known as a double replacement because it removes the aortic valve and replaces it with your own pulmonary valve. Then the pulmonary position has a cadaver or pig valve placed into it. This is done because the aortic valve is the most important valve that has a lot of pressure on it, so when possible you absolutely want your own tissue in that spot so that you don't have to worry about your body rejecting foreign material or tissue.

The thing about cadaver and pig (porcine) valves is that they are sterilized, non-living tissue. Therefore, they do not grow and eventually wear out or get obstructed. When Nick was 22 months old he had his 3rd surgery to patch open the cadaver valve because one flap of the valve had folded over onto another, causing an obstruction. But it was repaired and Nick was in the clear for what we knew would be a few years.

At that time we were told that the average time this valve would last is 3 or 4 years, so expect Nick's next surgery at around age 5 or so. Since then we've waited, and waited, and waited. Around age 6 we thought the time was approaching, but then nothing else changed, so we continued waiting. The way we tracked this was by visits to the cardiologist every 6 months. They monitored/measured the outflow of blood through the valve via a sonogram called an Echocardiogram.

Back in December of 2011 during our visit to the cardiologist we got the news that it was time to consult with the surgeon. After months of going back and forth with our medical insurance we finally got the appointment with Nick's regular surgeon at Childrens Hospital Los Angeles this past week and he confirmed that Nick indeed needs the surgery now. So here we are a week and a half out and Nick is being a rock star about it all. Tune into the next post for the details about this upcoming surgery.

Thanks for your support and love!