I've been planning a lot for Vance's birth and memorial. I've met with the palliative care team at MUSC. They are the Dr's who coordinate "not doing anything" as I like to call it. They say their job is to make him comfortable and help make sure our wishes are met. It makes me cry to have to talk to them. One of them said the word die and I thought I would just hearing them say that while talking about my baby. I wrote out a birth plan a couple weeks ago and finalised what I wanted to say earlier this week. I'll post it later in case anyone is interested. I had to send it so they could make it part of my record in case we went earlier than expected. They talk to me about things I don't want to think about. At my appointment this week we were scheduling my c section and they were telling me not to wait to late because risk of still birth. Then right after that we were talking about testing the do to prevent still birth which they normally wouldn't do for me. Seems like a contradiction does it not? Again making me angry that they think it's ok just to not care anymore. I looked straight at the dr and said no I want the tests. The whole reason I am doing this is to hold my son alive at least one time.
I want to look into his eyes and see what I see when I look in his father's eyes. ~Side note~ he just woke up. It's later than his usual. I guess this week has thrown him off schedule because we are getting up earlier and I have stayed up late last night and tonight.~ Anyway back to the blog! Random things have been coming to mind also, like for the first two weeks I can't drive. My mom will be here for a while, but when she leaves, how will my girls get to school? Vu can't help me with that. He'll have to work and he goes early. I want to send the dog away for a few days so I don't have to worry about anyone walking or feeding him. My mom is going to want to bring her dogs and I am going to have to say no. I have to decide about a car seat and sleeping arrangements for him. I don't want to buy a bassinet or car seat we will never use or use for just a couple days but if he leaves the hospital, I have to have them. So I tear myself up with these questions. For the memorial, There are still so many things I haven't decided yet. I don't even know what all my choices are. I've never dealt with funeral arrangements before. Burial or cremation, chapel and/or graveside service, flowers and/or donations? so many questions. Can't do it all at once. I've been really sad this week. I have made some plans for music and it made me feel good to do that. I tried to pick meaningful, but yet not sad songs. I don't want a sad memorial. Easier said than done I know. I picked his clothes and how I'd like him laid out for the viewing. Yes I'd like a viewing. I want everyone to get a chance to see him. But again, I don't want it to be sad, so it's not exactly going to look funeralish. He'll probably look like a little doll sleeping.
Then there is all the praying that has been going on! That's important for everyone to know too. Everyone has started asking for a miracle. We pray for his complete healing. Free from all birth defects including his down syndrome. Even if the Lord only sees fit to give us a half miracle (no down or no heart defect) It could mean saving his life. But of course we pray for as much as we can get and are thankful for whatever the Lord gives us. even if there is no healing, I know God has a purpose for Vance's life and he will make it know to me in his time. I bow to His will and hope for his mercy for all five of us.