Monday, August 22, 2011

Roller Coasters

Today started out much like yesterday. We came in the morning and her stats were about the same as when we left last night (which I will gladly take.) She tolerated suctioning very well this morning and they were able to remove some gunk from her tubing. Her bp and sats held steady all day so, in turn, we were able to have a pretty nice day. Dan's parents are still here, so we had a great lunch and dinner with them in Los Feliz which is a neighborhood close to the hospital. The rest of the time, Dan and I worked, read to Naya and played Words with Friends.

When we came back from dinner (which we go to during shift change since we can't be in the room) Naya's bp and sats had dropped a bit. We are still waiting for them to come up and I don't think Dan and I are leaving until they do. This is the worst for me mentally. I don't understand how she can be fine all day and then things change at a snap of a finger. It's truly killing me. I have to keep telling myself that i need to be strong for her even though most of the time I feel like I absolutely can't take this anymore. I am literally staring at numbers on a screen and willing them to move. Begging for them to move. At the same time though, I would rather endure this forever than lose her. I just wish that she would finally turn the corner and I could know with even a little bit of certainty that she is going to be all right. I have to keep praying and visualizing the future. I have to keep believing in the positive because, in my head, there can't be any alternative. The stress is really starting to get to us though. Dan's hair is falling out and I've already lost my milk production despite pumping all the time. I feel guilty about that but there is nothing I can do. I just hope that I will be able to get some sleep tonight and try to regain some energy for tomorrow.

Pray for a good, stable night for us with higher bps and sats (and more pee, while your at it. She needs to get rid of some fluid too.)


  1. this is beautifully written, Jame. all of us love you so much and think about Naya all the time. at this point, i have faith. everyone does. she made it this far, and she can definitely keep defying the crazy odds they give her and pull through.

  2. I am so glad I saw this on Maria's FB page. I knew your baby girl was having health problems when Kevin left for Indonesia but I had no idea it was so critical. I truly can't imagine what this must be like for you and your family. As a fairly new mom I can say that you are so strong and amazing, just being there for Naya and sharing your experience here. Thinking of you and sending prayers. Naya is so beautiful, just like her name.

  3. Is there a direct link where we can donate?

  4. Yes there is! Here's the link!