Monday, August 23, 2010

It all began with "I think I hear a murmur!" - Blog Event!

Hard to believe it's been 3 years since our CHD journey started with Jordan. It all really started with "I think I hear a murmur!" When she was born, her pediatric doctor thought she heard a murmur but figured it was a ventricular one that MANY babies are born with and fix themselves. After 2 weeks, she couldn't hear it anymore and no testing was done. Little did we know we needed to push to get some testing done...

Jordan after devouring her 1st birthday cake!

Jordan turned 1 on Thursday, August 9, 2007. The next day we took her to her 1 year well baby visit. That is when we heard those dreaded words "I think I hear a murmur!" We discussed that she had one when she was born but no further testing was done at that time. Dr. Hempy referred us to Dr. Scholz, a peds cardiologist at the University Of Iowa Hospital and Clinics. We were able to get an appointment for the next Monday. The weekend was long but I had myself convinced that it was just an innocent murmur and nothing to be worried about.

Monday we started off with chest x-rays which wasn't a big deal. Getting her to fall asleep for her "nap" for her echo was a challenge. She wasn't sedated for her 1st one since they had planned it around her nap time. Throughout this whole time we have only seen residents, med students, and fellows. After Jordan's echo, the fellow looked at the results and clammed up. He wanted us to come back and see Dr Scholz that afternoon. I had a feeling that something more than a murmur had appeared on the echo but just convinced myself I was over reacting.

Jordan's diagnosis was more than a murmur. She had an Atrioventricular Septal Defect (AV transitional canal), a cleft mitral valve and was in mild congestive heart failure. She was in surgery on August 22, 2007, to repair her defects. This was when everything became real. No one or nothing can prepare you to give your daughter over to a surgeon whom you just met 3 days before to "fix" an part of her body that is essential to live. No one prepares you to see your child being wheeled out with tubes and wires that are all necessary to keep her stable. And no one or nothing prepares you to see your child on a vent to help her breathe.

Jordan rebounded quickly and we were out of the hospital in 5 days. This was "suppose" to be it. She was "only suppose" to have yearly appointments to keep an eye on her and her mitral valve since it still regurgitated due to the cleft. Little did we know that we were not done.

Our family in January

Just this last January, Jordan had surgery again. She had been diagnosed with Subarotic Stenosis and Mitral Stenosis (or narrowing) at her last appointment in December. Because of the stenosis, it was causing the pressures in her heart to go up and putting more pressure on her valves. It had already started to cause the Aortic valve to weaken and regurgitate. She had surgery to remove what was thought to be a membrane. What Dr. Scholz and Dr. Davis didn't know was that it wasn't a membrane but the actual wall of her heart thickening in that area. Dr. Davis did what he could to remove the membrane that did exist but unfortunately it did not "fix" her problem. This is also when he found out she had a partial bicuspid aortic valve.

Jordan within hours of her surgery. While this is a hard picture to see, this is what makes it real for others. This isn't tonsil surgery...

This surgery did make her heart function better however she got staph infection in her chest incision. She landed back in the hospital for another 6 days and had a PICC line for IV antibiotics for another 6 weeks.

Notice the IV "ball" in her hand! It took about an hour to infuse. She had to do this for 6 weeks!

Today Jordan is a vibrant and energetic child who attends preschool and acts just like every other 4 year old I know. She has had some delays in speech and some of her early milestones were reached later than heart healthy kids. Her pressures are down and we are on 6 month visits right now. We know there are more surgeries in her future. We just don't know when-it could be next year or it could be 20 years from now. All depends on how her heart handles her growth. She's been told she can't play football, wrestle or be a heavy weight lifter when she gets older by Dr. Scholz. She handled that news pretty well :-D

Jordan just turned 4! Blow those candles out baby!

Jordan 1st day of preschool was Monday! This is her 2nd year at Bright Starts!

Jordan with two of her biggest supporters-her brothers. Riley and Drew started school last Thursday. Riley is now in 5th Grade and Drew is now in 2nd!

I can't imagine our journey without such wonderful support from not only our friends and family but also from our CHD family. People whom we have only "met" online have become good friends of mine. People who we wouldn't have met otherwise are now some of my closest friends. While I would do anything to take the pain, future surgeries and worry away from Jordan, I really don't think I would trade it for anything.

We've come a long way from "I think I hear a murmur" but a road that is never ending and always changing. We will continue to travel that road where ever it takes us. We have faith in Jordan's doctors, nurses, and most of all God that road will take us to only bigger and better places. It has led me to become more aware of spreading CHD awareness. I have contacted senators and representatives regarding health care laws. We have participated in Heart Walks (Jordan was the Heart Child this year), support groups, and contacting the Governor of Iowa for a Proclamation for CHD week in February. I have also written letters with other CHD moms ( ) to Oprah, Good Morning America, The Today Show, Ellen, all of which have gone unheard. (However, recently Ellen and The Today Show have had clips of CHD families!) While our efforts are not always greeted with open arms or open hearts, we continue to raise aware awareness any way we can. We continue to pray for that "magic" procedure to benefit the worst of heart defects. We continue to support those who have lost their children to CHDs and celebrate those who are beating it.

While Jordan has put her surgeries on hold, our journey is far from over. This is something we do NOT go through alone and praise God for that!