I could tell you all about myself, but I promise I’m not that interesting. So instead, if you’ll let me, I’ll tell you about the most amazing little guy I’ve ever met: my son, Liam. Chances are, you’ll learn the most important things about me by learning about him.
Liam was born in Nov. 2011 with 3 Congenital Heart Defects and a deletion of chromosome 22q. He had his first open heart surgery at 6 days old.
Here he is at 2 days old prior to his 1st heart surgery.
At 7 weeks old, he came home and had a really good first year. Just a few days after his 1st birthday, we went to Michigan to have his second open heart surgery at Mott Children’s Hospital.
3 weeks later we came home. His surgery went well, but he didn’t really seem to be himself. Less than two months later, we took a survival flight back to Michigan. The patch they had sewn in his heart had come loose, so in January of 2013 Liam had his 3rd open heart surgery.
5 weeks later Liam came home on oxygen. He seemed to be doing well, even getting off the oxygen.
Then he crashed.
His newly repaired patch had come open again. This time it was completely open and not restricting any blood flow to his body. This caused his liver to go into shock. The doctors told us to prepare for the worst. His liver enzymes were off the charts, and there was nothing they could do but just wait to see if he could recover. But he did recover. After a few more days, they lifted his sedation and extubated him. The next morning he started having seizures. The sedation drugs had been masking them. He had a CAT scan and a MRI. The neurologist informed us that he had suffered a global brain injury. Again, they offered very little hope, telling us that we would be lucky if he opened his eyes again, and if he did, he would have very little quality of life. 3 days later he opened his eyes. Not too long after that he was smiling, laughing, and playing. It was truly a miracle. He had his 4th open heart surgery. The surgeon informed us that he had been fighting a culture negative infection in his heart for nearly 5 months undiagnosed. In May, Liam came home on IV antibiotics.
It was a short trip home, though. In June we found ourselves back in the hospital. They weren’t quite sure what was wrong at first. Dehydration? Maybe a virus? After almost 2 weeks, they decided he was in congestive heart failure and sent us back to Michigan via survival flight. We spent 10.5 weeks in the hospital. His patch had 2 small holes in it. He needed a surgery, but they didn’t think his body could handle it. They sent us home on oxygen to give him time to heal and recover from the 3 heart surgeries he had had within a 5 month span.
Liam really surprised his doctors with how well he did. We celebrated his second birthday and Christmas at home.
He learned a lot and was really becoming such a big boy. He loved Thomas the Train, bubbles, and going for rides on his tricycle. Then we got the call we had been dreading; it was time for Liam’s next surgery.
On May 18th, we drove up to Michigan. His surgery was the 21st. We met with the surgeon right afterward, and he seemed surprised at how well it went. He even thought we might go home in 5 or 6 days and that Liam wouldn’t need oxygen anymore once he had recovered. Then things starting going downhill. He had a lot of bleeding. It took a few hours and a lot of blood products, but they got it under control. That night he had a lot of issues with his blood pressure, and the next morning he had two cardiac arrests, which caused him to lose all of his brain function. At just one day over 2.5 years old, we had to say goodbye to our baby boy.
No parent should ever have to do that, which is why when I’m not doing photography, I’m working to raise money for Congenital Heart Defect research through the nonprofit we started in Liam’s memory, The Legendary Heart Foundation.
Okay, I also watch a lot of Netflix when I’m not doing photography, too.
My heart aches to have him back, but I try to make the most of each day. Liam was so happy and so full of life; I know that’s what he’d want me to do.
