Saturday, August 27, 2011

Mixed Emotions

Today started off rough. I think I start half my blog entries with these words but it is only fitting because half of our days start off rough. At about 4am, Naya had some more blood pressure issues and they had to raise the level on her pressers again. So disheartening to come in and see low numbers on the monitor and high numbers on her medication. It really affects our mentality for the rest of the day. Her blood pressure eventually rose up again after she got some fluid. It's ironic because that's what her body needs yet is what is causing some of her problems.

The doctors rounded around 10ish and we talked to the doctor who made the connection to this condition they believe Naya has called lymphangiectasia, an extremely rare disease with no true "cures." To put in in basic terms, her lymph nodes are very leaky. It explains a lot of symptoms she has been having and why they haven't been able to get rid of her edema.

I have such mixed feelings about this diagnosis. In one way, I am glad that we may finally know somewhat about what is going on and what we need to do for treatment. On the other hand, it is terrifying that she may have this particular disease. We've spent a lot of the day reading up on it and that has made us very depressed since it's chronic and may affect her day-to-day life and might involve a lot of future hospitalizations. I know we shouldn't go there, especially since she is a) not diagnosed yet and b) nowhere near out of the woods yet but I can't help it. It terrifies me. This is not something you want for your child - a lifelong illness that is hard to control. I still can't believe this is all happening to her. I feel like such a failure as a mother that I wasn't able to protect her from this.

This diagnosis also leaves us with sooooo many other questions and worries. We don't know how she got this disorder - it could have been a result of the septic shock or she could have been born with it. If so, is it genetic or just some sort of abnormality? (They don't know). This disease is so rare that they can't really answer any questions about it. They actually said they would like to get our permission to make her a case study. It's just un-freaking-believable. The fact that it is such a rarity gives me even more mixed feelings. Are they going to use her as a guinea pig? Or will this push them even harder to help her get better? One thing I do know is that I feel terrible about this. I feel like I somehow caused this to happen. All I know is that she doesn't deserve this. And my husband and son don't deserve to be dealing with this. Nor our families. Nor does anyone. This is not what you expect or plan for to happen when you are pregnant and desperately want to have a baby. That's why we didn't even find out the gender when we were pregnant - all we cared about was having a healthy and happy baby that we couldn't wait to love. I just wish she would start getting better. I hate seeing her like this and it kills me a little more everyday. Sorry for ranting a bit but, as I said, my emotions are all over the place on this one and I haven't really had time to digest all of this information.

Moving on to happier things, my friends Arlan and Todd came to spend some time with us this afternoon and we went to dinner at Home, a cute restaurant in Los Feliz that serves breakfast all day long. I got some ridiculous pancakes covered with sauteed bananas and walnuts with a yummy frosting on it. And a beer. Cause that's how I roll. It was nice to see them and spend some time in the "normal" world again. Of course, that makes us feel guilty even though we are going to go crazy if we don't get out of here once and awhile. They left a little while ago and then Dan and I went back to her room. Her stats are currently okay but her arterial line is acting up. Hopefully, they can fix it so they don't have to start another one in her. Dan and I are going to stick around for a bit more and then head back to pass out. It has been a long and emotional day. Thanks for keeping us in your thoughts and prayers. As always we appreciate it.

PS- Happy Birthday to two of my besties Lindsay and Jess. Love you both and I hope you had wonderful days. I'm sorry I couldn't be there.


  1. are not a failure. You had NOTHING to do with this. Unfortunately terrible things happen all the time, just not to our children. That baby girl is as strong as they come. Are the diuretics working at all? Just try to keep the faith, because I have a whole other church praying for her. She's a fighter and she's giving it her all! No one deserves this especially an innocent newborn. All of our love and prayers are with you all. Wish we could all be there to support you all! BTW Allison's middle name is Jane too! :D

  2. Awww....Jamie...try not to beat yourself up for this. I can only imagine all the feelings and emotions you are dealing with and they are valid...but you have to understand that it is not your fault!!! You are doing a marvelous job of staying strong for her and that is what Naya are doing so much for her when you are there talking to her and touching her and playing music for her...more than you may know it...again...I am so sorry that you, your family, and Naya the princess warrior are going through this and your all do not deserve this!!! Thought and prayers are continuously coming your way from all over...she will fight through this!!!

  3. Hey Jamie, please don't blame yourself. This is not anything you had any control over. I know how hard this is for you and Dan and your families. You are in our thoughts and prayers. Please don't apologize for anything you put in your blog either. This is a place for you to rant, rave and hopefully feel a little better afterward. Your friends and family are here for you. Love Terry and family

  4. Dear Jamie,

    The Clark Center volunteers want you, Naya, Dan and Ty, to know you are in our thoughts and prayers. Please continue to keep us posted. You are such a wonderful Mom, and Naya, the little warrior, is undoubtably drawing much of her strength from you.

    with loving thoughts,
    The Clark Center Volunteers