Saturday, October 06, 2007
The Princess Macy Jane Current mood: sleepy
Macy Jane smiled for me tonight! It wasn't her usual big smile, but it was a smile nonetheless. I have been waiting for that smile for over 3 weeks. When she smiles that usually means that she feels good. That makes me feel better knowing that she isn't hurting.
She did not sleep very much last night and today. Her dayshift nurse asked me if she could give her something to sleep and I had to tell her no. Why would you give a baby something to make her sleep when she is perfectly content to be awake and watching television? I could understand if she was fussy and dropping her sats, but she wasn't. Needless to say she didn't giver her anything. She finally drifted off a few hours ago and woke up a few times, but I just put her on her left side and unrestrained her right arm, and whaddya know? She curled up and went right to sleep like a big girl!!
She has been on room air for two days now and her sats are 92% at the moment. They are actually too high according to her doctors! The other day (I may have mentioned this before, if so please excuse my overstressed brain) we were thinking that she was flushed looking and then it dawned on me. We are so used to seeing her pale and bluish, and now that she is pink like a normal baby, we can't get used to it!
Everyone comes by to see how Miss Macy Jane is doing. She has everyone smitten, just like she did at LeBonheur. Everybody keeps saying how beautiful she is, and as a proud mother I can't help but agree! I have decided that Lord willing, I am going to dress her up for halloween in her little outfit I bought her at Target. It isn't a costume, it's a really cute shirt that has a flying witch on it, a hat that is a black cat, socks that have halloween characters on it, witch slippers, and black pants with halloween stuff on it. She is going to be cute. I can only do this if she is out of ICU or her arterial line is removed. So pray for that!
In other good news, my dad, sister, brother and sister-in-law are flying out here for the whole week of Thanksgiving!!! I am so excited. When we found out that MJ would have to be out here until her second surgery, I cried. The first reason was because I miss home and want to be able to give MJ a normal life, AT HOME, and the second was because I would not be home for the holidays. The holidays are a big deal in my family and everyone always gets together. I am so thankful that everyone is going to be able to fly out here! God has blessed us.
Something that I need ya'll to pray about is insurance. MJ has a 2 million dollar policy and as of October 1st, she has used 1.3 million. YIKES! She was not even at $300,000 when we came out here and within 3 weeks she has used one million dollars. Because of this, we are applying for SSI for her and also to Tenncare. If she gets SSI then she will automatically have Tenncare. However, we think that we make too much money and have too much in our bank accounts, but nonetheless we have to try. Once her insurance money is gone, they should have to cover her, but then again they may not. Please pray that we will get her on one of them!! If not, Steve and I will be stuck with A LOT of bills that we cannot ever pay off, especially with another major surgery in the near future. God will provide, He always has and He always will.
Steve may get a job as a nurse out here. He really wants to be here for me and MJ and he can probably get an assignment. Brian, MJs favorite nurse, told us about a way to make some fast cash because nurses in San Francisco are going on strike as of the 10th. However, Steve has a lot of paper work to get done between now and then. Pray that it works out because he could make a LOT of money in just a few short weeks and it would help us out greatly. Again, God will work out all of the details. His personal leave at Baptist ends in February and if he is without a job because we are out here, then so be it. They should rehire him, but if not that will be God's way of telling us that it was time for him to move on anyways. That place is supposedly going down the tubes anyways, so it might be better. Who knows! That is a long way off from now and I certainly hope that we are home by then.
Tonight we all loaded up in our nice little piece of crap rental car and went searching for a pizza place. We found one and it was SO yummy. Steve was in heaven because they had an arcade. He is such a sucker for them and was like watching a kid at Christmas opening packages. He will probably kill me for saying that, haha. Oh-well.
Well, it's almost 0430 and I am a little tired. Think I will go and get some zzzz's. Oh yeah, my sister got MJ the cutest halloween, Thanksgiving, and Christmas, and winter clothes at Carter's the other day. She is going to look SO cute in them. Remember me talking about MJ looking emaciated? Well, she looks like her old self again. She was so dehydrated before that she looked all drawn up and sunken. She weighs over 10 pounds again and seems to be doing well.
Last but not least, people have been asking for our address to send us care packages. The address is:
Ronald McDonald House
c/o Steven & Bethany Wiles--M208
520 Sand Hill Road
Palo Alto, California
94304
Hope everyone is doing well. What's the weather like where you are? A few hours north of here it is snowing and it is in the 40s here tonight! BRRRRRRR.....I have ice forming on me now. Haha
Much love,
Bethany