Thoughts...

The more I read about other families dealing with this CHD, the luckier I think we were after Monique's first open heart surgery. We had no complications. She went in for surgery, it finished sooner then expected, yes she was on many medications and needed blood afterward but she only stayed in the PICU for 1 week. After that week we went into a normal room and we went home a week later with only Lasix and Aldactone. That was it. We had check-ups every 6 months. When she was a year and a half old she needed to have a cardio cath done. That's it!! Just check-ups and normal kid stuff.

I have read stories of so many complications and the more I read the more afraid I get for Monique's next OHS. So much can go wrong. So many complications could arise. Do I drive myself crazy trying to analyze everything and find all the answers. Are the answers out there? I think that because everything went so well, I somewhat shrugged Monique's condition off. Now I am realizing how very serious it is and it could be!

Yesterday Monique got her flu shot. It almost broke my heart. As she screamed before being poked with the needle i got flashbacks of the problems they had finding good veins when she was little. She had rolling veins. Before her cath she learned 2 new words - stop! and OW!, pretty sad. So last night when she did not want to go to bed i didn't force her, I rocked her. I feel as if I should be taking every opportunity to be with her and to make her feel like a princess as I can. But doing so, I am spoiling her and I would not be making things easier for the future. As I lay in bed last night I felt like she should be in bed with me and I should be enjoying all the cuddles I can get now. I am so afraid of losing her, she is my life.

But I try to tell myself everything will be ok. Everyone around me is telling me it will all be ok. I try to believe them but it is so hard. Jon tells me not to worry yet and that the doctors will tell me if and when I have to worry. I try so hard to understand and really believe that. Then I go into defensive mode and scream inside. YOU DON'T UNDERSTAND!!!