3/19/09

Changes: I held him skin to skin for almost 3 hours, his feeds were increased to 20 cc every 3 hours with supplement to make it 24 calories per ounce. Will go up to 21 cc every 3 hours at midnight. Ventilator changes: rate decreased to 40 and pressure support from 12 to 10 (good thing), he is still requiring oxygen beyond room air which is 21%, his oxygen requirement is between 35-50% (not good but better than before). His nurse tonight was a labor and delivery nurse and has worked several places including Alaska. She has a friend that has a similar experience with her premature baby: heart shaped uterus, brain bleeds and a diagnosis of CP. The child is now 5 years old. I am going to check out the website, currently the site is down. On my drive back to the Fisher House, AKA home, I heard that Country song again "It Was Just a Dream" (about the military man that dies in the war and she is preparing for a funeral instead of a wedding), the line that gets me the most is "This can't be happening to me this is just a dream". I feel like I am being punished for something I did or did not do. I tried very hard to be careful while pregnant, like take my vitamin every day (even had a reminder alarm off on my phone daily to remind me to take it), drank water, laid on my side while sleeping, tried not to lift anything heavy and limited caffeine. I love soda and green tea but I eliminated the green tea since it interferes with folic acid absorption. I read him a story tonight and it talks about the miracles that God preformed. Is it wrong that I feel that he won't heal him? Is it his will that Abraham require extra care? Right now we don't know. I am growing more attached to him and it would be difficult to let him go to heaven. I just don't understand. Everyday millions of babies are born that are healthy. Their parents may not have the best lifestyle and not be in a situation to provide for them but it boils down to their babies are healthy. Granted I do have the background to care for a child that has a chronic medical condition. He seems to be so perfect and it will be difficult for me accept in the future that he might not be able to walk, talk, swallow food, hear or see. Would God want a child to remind on earth and not have a quality of life or would he want him in heaven where he can make a difference. Aubri in Guam sent us a card that her friend Kelly wrote "God does not make any mistakes". I just am questioning why and it's probably not good to have this question. I am going to stop now because this could just keep going. Children with CP can have a quality of life, I have taken care of several; However if he does not know his world at all or who his parents are then what his quality of life?