Well crap...

I was really hoping that Ayva's EEG today would be better than last time (even though I can see her having seizures all day and shouldn't have gotten my hopes up)- but some part of me was still clinging on to a shred of hope that she would be "all better". But no- she is not all better. She is still having seizures all day long (and sometimes at night). Dr. A has increased her dosage of meds and I am to call him in 10 days to tell him if things are better. She is such a trooper. Usually putting 26 little buttons on her head at 730 in the morning after a very sleep deprived night (they make me keep her up till midnight and wake her up at 4 am!), usually it makes her very crabby- but this morning she was in a good mood. No crying in the car (she hates her carseat), no crying while we watied in the waiting room to be seen- she actually smiled and giggled a little while I played with her and laid so nicely while all the buttons were being put on her head. She went to sleep fabulously after that and barely cried when they took all the buttons off. Then for her appointment with Dr. A after her EEG she slept in my arms- with her mouth open! She is so brave and I am so proud that I have such a wonderful baby- I'm glad I have such wonderful children! Anyway, her EEG was not better and I am still feeling a bit depressed about it. If only we knew the signs of I.S. she might have been diagnosed earlier and it would have not been so hard to control. Dr. A gave me this analogy to understand it better (he always gives me analogies and it really helps me understand) he said it was if we are trying to put out a fire. Well if you act quickly and the fire is only in the trash can, then it is easier to put out. But if you wait, and the fire spreads through the whole room, then it is harder and can take longer to put out. We are trying to put a fire out that has spread and it really sucks. That's all I can say about it. It sucks. Her siezures are so......so... It's like a very exaggerated startle reflex. That's why I thought for so long that she was just being startled. I would say, "Oh, I scared her" or that she was having that reflex when you are starting to fall asleep and get startled. Well that was obviously not the case. I just wish things were different. I wish I could go back in time and change things. I would change a lot of things- as I'm sure a lot of you would. I would make them take the babies out three days earlier than they did. I had another bleeding episode and after all that had happened before that day, I should have demanded they take them out. I should have trusted my gut and told them that it was safer to be out than in there with deprived oxygen. But I didn't- and I blame myself sometimes for it. Those 3 days could have made all the difference for the girls. It could have changed everything for them. But I thought the Dr.' s knew best and I let them tell me the bleeding was ok and it was not a placental abruption. They were wrong. I was wrong to not go with me gut feeling. Now they are having to pay the consequences- not me. Not the Dr.'s. Life isn't fair. It isn't fair that they have to deal with all that comes from one decision. Those three days could have made all the difference for them- but we will never know. If I had known poor Ayva was having seizures, that could have made a difference for her also. It's just not fair....