today was a very hard day yet a very needed day. ryan and i spent it alone together with kenzie + doctors and nurses. we decided we would 'try on' our decisions today. for part of the day we would live like we made one choice, we would plan things, talk about what we would do next and how it would effect our lives. the other part of the day we talked about the other decision. it was full of tears. our life has become something we never thought would ever happen. i never thought we would be making these choices. i look at my daughter and struggle with what to do. i think i would do anything to keep her here in my arms. to keep her happy as much as possible and to give her the best life i possibly could. i just think, I'm not sure that's enough. my 4 month old cant breath on her own, she is at the best she will be physically. we are not sure how fast but all her functions will go. every 3 hrs. or so, she will hate us. we will have to do cpt and cough assist and throughout the day suck out her secretions. will i be able to give her enough happiness to over rule those moments? my daughter will not learn to crawl or walk, she will never dance. would i be okay to sit by knowing she would never be able to do that? kenzie may only be in our lives for a couple years- during that time, would it benefit her to be here on this earth or would she be better in heaven? if i choose to take her home with ryan and i trach and vented would that be selfish of me? would i be keeping her from being free in heaven? we talked to makenzie today- this girl is hard to read sometimes. i kept trying to see what her eyes were telling me but couldn't quite figure it out. i have prayed to God to help me, i feel a little more peace with one decision but not enough to make that decision. I'm not ready. we are not ready. to end our day, ryan and i went out to dinner during the time we get kicked out of the room for shift change. just a quick run to chillis. i haven't left the hospital other than thanksgiving since kenzie got here. it was weird to go out to eat without her. while sitting there watching all those other families with kids my heart broke. life has stopped for ryan and i but the world continues to go on. we were ready to have a family, to have our daughter with us wherever we go. now that she wont be able to do that- i want to scream and hit someone. she is our pride and joy, she was suppose to be with us forever. i am still not understanding why we are going through this. i don't understand why i cant have what most other people have and that's a healthy child. i hate that kenzie has to be in this position. we have talked to a few amazing people the last little while. they are going through similar situations. i wish i could hug them. they are all so strong, so empowering. i don't feel strong, i feel weak and i feel I'm going to crumble. we have so many choices to make and although everyone says there is no rush, there is a little rush because we have other things we need to get in order sooner rather than later but they all depend on our decision. my heart hurts so bad.
kenzie has had a pretty good day. she has been really upset a couple times and they had to give her some medication. earlier this evening she threw up twice on me, after we go her back in bed she did it again. it wouldn't seem like a big deal but when she got her gtube she also got a nissen which prevents any throwing up or reflux. they didn't know why she was throwing up but she is doing fine now so they are not worried. if i was at home and that happened, i probably would have passed out. i get so nervous about everything, every noise, every movement or non movement.
kenz got another bath today. hooray. she loved it again. she is so beautiful.