Damien was our first baby and we were so excited that he was coming. We found out early in our pregnancy that there was something wrong. At our 20 week scan the tech told us that there were problems and called in the doctor. She told us that our baby had a large hole in his heart and they wouldn't know how it would affect his life. We had heard of many people having holes and being perfectly fine so we were scared but optimistic.
Then on March 24 2004 at 27 weeks I went into labor and they were unable to stop it. In I went for an emergancy c-section and our little boy was born. He weighed 2lb 3oz and they discovered he was also missing a large part of his pulminary artery. We were told that this could be repaired by surgery at a later stage. When Damien was 3 months old he had his first round of heart surgery. Everything went well and after another 3 months he finally came home. It was like life had been put back into order. He was a beautiful baby and had such a forgiving nature. He loved people and was always ready with a smile and cuddle. We enjoyed this fantasy life for 10 month, during which I became pregnant with our second child, also a boy.
Adrian came 5 weeks early and on the day he was born, my partner took Damien to have a scan to check his heart. The technician told him that day that our angel was going to die. Of course we didn't believe her until the cardiologists made an appointment for him at the Childrens Hospital. He had developed a condition called hypotrophic cardiomyopathy and it wasn't looking good.
July 12 2005 Damien was admitted and our nightmare began. He caught an infection and after going into respiritory arrest was taken to ICU. After suffering 2 cardiac arrests in one day he was put on an artifical heart and lung machine. We were told that he had to have more heart surgery but they weren't confident in him surviving. My world ended that day. Both my babies were in hospital. What the doctors didn't take into account was Damien was a fighter. He breezed through the surgery and recovery. But over the next 7 weeks he would repeatedly crash and end up in ICU again. After his fourth visit, we were taken into a room and told we would be lucky if we had 12 months with him.
Finally on 16 September they decided he was well enough for us to bring him home and enjoy our time with him. We weren't to know that our time would be so short. One week to the day 23 September, Damien started having trouble breathing so we took him back to the hospital. While the doctors were trying to put him on a ventilator he went into cardiac arrest. We watched while the doctors and nurses worked with all they had to bring our beautiful boy back. They couldn't. He was 18 months old and had just cut his 5th tooth.
If I hear the pain will get easier once more I will scream. It's been 6 weeks and the pain is getting more unbearable each day. We were lucky that we got some photos of our babies together before he was taken from us. We made a website while he was in hospital, www.damiens-habitat.com
If anyone can tell me how to get through the day without feeling like I need to scream please do...