Monday, November 29, 2010

She does it on purpose

I was waiting to blog until after Hope's nurse weighed her tonight. She was 6 lbs 15.3 oz as of last night and I wanted to be able to write that I now had a seven pounder. So of course she went down - 6 lbs 14.8 oz. Oh well.

Other news... she got to go on a walk today. It was just around the unit, but she stared wide-eyed. It was great. I'm sure her nurse thought it a bit ridiculous that she had to push her IV pole and drag her oxygen just so that we could get out of her room, but she did it for us anyways. Hope also got approval for "sham feeds". This is what I like to call "bulimia training". They let her have some pedialyte from a bottle, then they suck it back out with the replogle tube. Nice, huh? She's just happy to get to swallow something down. Hopefully she'll get to keep some down soon.

We also are scheduled for our "care conference" on Friday morning at 9. The GI doc won't be able to make it, which is kind of frustrating. We were given the option to put it off until next week, but I just want it done. Please be praying for God to lead us through this.

1 comment:

  1. Sweet friends in Christ
    I just wanted to let you know that I am still praying for you. God will give you the wisdom that you need for the decisions that you need to make. I know how frustrating it is to see the pain filled medical world, and to feel there is no way out. Lillian was to be enveloped by it for two years. I guess God decided that was too long and too much for her. She would have turned 5 in October, and been finished with Chemo only to have to deal with the permanent effects of it(brittle teeth, possible infertility, the possible brain damage and much more). I remember petitioning God after counting her IV's (over 23) and being told of the probability of her having brain damage from lack of oxygen to her brain. I knew I wanted to still hold her, but I asked God to make the decision for me. He did. Lillian thought that what she was going through happened to everyone, even asking me what happened to James' "tubies"(broviac). All this to say, I know that God will lead you and even step in and make decisions for you. We do not have the capability of messing up His plans for us, or our children. He knows our every thought and knows our decision before we were. Call me any time if you need to talk. We love you and you are in our thoughts and prayers. God grant you guidance and wisdom