Saving Little Hearts

My son Connor was born on May 1st, 2003 at Bergan Mercy in Omaha, Nebraska.

It was a c-section delivery because he was breach but it was a perfect delivery and he checked out just fine. That night I was holding him and he was turning blue and wasn't breathing very well so I called the nurse and they rushed him to ICU. Since I was recovering from a c-section I really did not realize what was going on and an hour later I was told to call my family because his condition was very serious. At 2:30am I called my family and they came to the hospital where we spoke to Dr. Amin a cardiologist from children’s hospital. He explained what his heart condition was and that they were shipping him to children’s hospital only 12 blocks away. Before they took him he was baptized by the chaplain at Bergan just in case. My husband and mother in law (who is a nurse) went to children’s with Connor and of course I had to stay.

The next morning I got a phone call from Dr. Duncan, one of the best cardiac surgeons in the world and he explained to me that Connor had Hypoplastic Left Heart Syndrome or HLHS which basically means that the left side of his heart did not develop properly so it is not able to function. My doctor let me out of the hospital that day and I was able to see Connor hooked up to every medicine possible. I was told he would not make it another 24 hours...but they were wrong.

There is a series of 3 surgeries Connor had to go through and they are too hard to explain for I still don’t know everything but the first Surgery was called the Norwood and although not recommended his surgery took place on May 15th 2003 which happened to be his original due date so we took that as a sign. He recovered better than anyone expected but it was a long hospital stay. We were there until he was 4 months old and we went home for 4 weeks and came back for his second stage called the hemi-Fontan or Glenn and that took place on September 30, 2003. We were out of the hospital in 10 days and were free until he was 2 when he would have his 3rd and final stage.

Connor had his Fontan August 30th, 2005 and it was a struggle. The fluid just would not leave him, so were ended up staying for 4 weeks and that seemed like a lifetime but it was worth it. After we got him home and started therapy again he started walking in April of 2006 just a month shy of his 3rd birthday. He is behind in a lot of ways and developmentally he is only 2. He started school in August of 2006 and was loving it until he got really, really sick and we had to take him to the emergency room at children’s.

September 20th, 2006. Connor had a bacteria infection in his blood and on top of that he fell at school a few day prior and developed blood on his brain which later went away. The bacteria in his blood is a mystery to this day. No one knows how he got it but they do know it came from his stomach and some how spread to his blood stream. After some more tests we found out that Connor’s last heart surgery was failing and we were told there was nothing that could be done so we thought we had lost him but we received the wrong information and after 10 weeks at the hospital Connor had surgery to "fix" his heart and we were home in 2 weeks just 3 days shy of Christmas.

This last stay was 3 months long and Connor got so weak that he still is not walking again but he is getting his strength back.

It's been a long 3 and a half years and every parent knows that having a child with a disability is not easy but we have to believe that God gave us these children for a reason and I've come to learn that everything happens for a reason even though we don't understand. There is so much that has happened in the last 3 years that it would take forever to type it all out but the main thing is that My son is strong, he went through 4 heart surgeries in 3 years and despite being told twice that he's not going to make it and the fact that he is still here is a miracle in itself. A few weeks ago I got a phone call about Make A Wish and just before that phone call I had forgotten what Connor had been through and that snapped me back into reality. I never thought at age 22 (now 26) that I would be raising a child with a heart defect and making a ton of friends along the way, some who had passed and some brand new and I am grateful for every one of them.

Not every ones story is the same but they are all alike. No matter what heart condition our kids have they all share one thing...their heart. They are all strong and amazing and I wouldn't change my son for the world.

I don't know how long I have with him but every day is a blessing and I cherish every breath he takes because he can be gone any second as I've learned by losing friends.

Today Connor is a very happy almost 4 year old who is back at school and causing problems with his 2 year old sister again. I never thought I'd say I miss the fighting but after that big reality check nothing bothers me a whole lot anymore. Even though his heart will probably never be "fixed" he is perfect in every way to me and I love him more than words can say.

Sorry I didn’t go through all the details but my story could be a novel if I sat down and wrote out everything.

Thanks for reading.

Jamie