forestfly - my dd was eight weeks old when she had to have two open heart surgeries within three days of each other. She has a wonderful zipper scar and is doing brilliantly at 14 months old. I was also lucky to have a fabulous supportive husband. We supported each other and when one was down the other would be strong and vice versa.
If you want to contact me via email I would be more than happy to answer any questions you have.
There were a number of children/teenagers in and out of the ward whilst dd was there - i discovered it was more common than I thought. I was also inspired by a mum whose baby had already had four operations in her short life and yet the mum found the time to come and talk to me and tell me everything would be all right. That really touched me - that she could think of me while her little one was in ICU.
Cope - I think like someone else said - you just do cause you have to I guess - which sounds silly and patronising but that is how I felt. Generally the staff at the hospital were brilliant and the best person to get talking to were the cardiac liaison nurses - they were very helpful and supportive - in fact our liaison nurse phoned just recently to see how dd was.
We knew when I was 20 weeks pregnant that she would need surgery although a proper assessment could not be made until she was born. We were told about ten days after she was born that surgery would be December - then we got a call in September to tell us she was to have the surgery late September.
Those hours your son is in surgery will seem like the longest of your life but the nurses where very helpful in giving us a tour of ICU and explaining everything to us - prepared us for what dd would be like after surgery. I am not sure how long it will take - dd was in about 4 - 5 hours each time. That depends on the type of procedure. Dd had to have a patch sewn in to form the central wall of her heart where she had no central wall as well as a valve repair. The second operation was to secure the patch where it had started to lift as the stitches had not secured it effectively enough.
IN fact the day we had to take her to hospital last year to be prepared for surgery the next day was my birthday - pretty horrible birthday but the last thing to worry about and dh made it up to me this year. Although dd recovering and doing so well is the best present anyone could ask for.
What hospital will he be in?
Just to let you know another poster - 2under2 - her dd had open heart surgery also at a very young age.
You will worry and you will cry and be scared and angry and think it is all unfair and horrible and you are right it is. Don't worry about how you feel and what others think - you have the right to be scared and worried.
I just look at my daughter today and am thankful that she is recovered and her heart is like a normal one according to the consultant at our last appointment.