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Thanks for visiting my diary. I've been journaling since 1984 and have chosen to share some of my entries online. They are not all positive thoughts, but I hope that reading them might be a blessing to someone who needs encouragement.
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Dad has shown quite a bit of interest (for him) in discussing NICU issues with me. He's let slip some things since last night that are pretty interesting but also very sad. I'm realizing just how complex this issue of my parents not having support in adjusting to having a preemie was. I have always trusted in doctors and other health care professionals. They're working health care; surely they have good intentions. I think this complacent trust has been handed down through generations in my family. It's much easier to rest in complacency than to try to find the balance between paranoia or hysteria and getting accurate information. My parents were so young when I was born! They probably never realized there could be any complications with pregnancy, let alone thought about what those could be or how to deal with them. They were just a young minister and wife having their first baby. And unfortunately, I know enough now to know that NICU's do not tell much.
Dad said last night that when I came home I did not sleep through the night. That was when they found out that most of the procedures that had been done to me (whatever they were) were done at night. This morning he told me that he didn't know I had had a blood transfusion until after I came home. I asked him if the hospital had given them a discharge summary. He didn't know. He said, "We were so ignorant. We didn't know what to ask." And the NICU probably did not offer up anything unless it was asked for. If they did give a discharge summary--and surely they must have--it probably made no sense to my parents.
Dad asked if I had ever gotten the records. He remembered me and Mom talking about it. Well, I never did. I really do want to take that up again and at least get the summary. I know the chart would be horribly expensive, although I would really like to have it as well. I don't want to overemphasize or go digging for things that may or may not be there, but neither do I want to be unfamiliar with my past. It's becoming less a matter of finding answers now and more a matter of simply knowing the truth about my own life and medical history. Whatever hurts happened there, God can heal them. But it wasn't right for my parents to be kept in the dark about their baby's medical needs or condition, and it isn't right for me not to know. It's not a matter of frantically searching for missing pieces now, and how it ceased to be that I really don't know. I just know I won't question it.
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