Wednesday, August 24, 2011

Little Changes

Today Naya turned 1 month old and it was another decent-ish day. When we came in the morning, her Blood Pressure and Sats were a bit low but nothing to drastic. We were glad to see that she had also been measurably peeing more. Her blood pressure and Sats remained pretty stable and consistent throughout the day. She is close to peeing out as much fluid as they are putting into her today, so that should help with the edema (swelling), which will (theoretically) reduce compression on lungs and heart. They also gave her a blood transfusion today, which they hope will pull in some of the fluids and help her pressure and peeing. The Doctor is still extremely worried about her chances for recovery though and told us that again today (We have asked for complete honesty.) It's very hard to hear but ever since yesterday, I've felt some sort of strength take over me where I truly believe that she is going to get better and that everything is going to be okay. I can't really describe it, it's actually very strange, but I believe in her strength. She wants to get better. Hundreds of people are out there rooting for her - that must mean something. And I do believe that she is showing slight improvements, just very,very slowly. Maybe I'm just avoiding the inevitable but I really don't care. That's how I'm choosing to deal with it and it's working for me.

Anyway, her hair seems to be getting lighter and I have definitely noticed some red tints in it. Her nurse (whom I just love!) changes her hair bows every morning. Today her bow was purple. Dan and I downloaded some Disney Princess Stories aps today and started reading them to her. (Side note - real Brother's Grimm fairy tales do not always have happy endings.) She seems to like them. We have also been playing her music from the Disney Station on Pandora, which she really seems to enjoy. It's funny, as soon as we turn the music on, her feet and hands start moving around and sometimes her stats improve. She loves her music just like her mama. I love seeing her moving around and responding to our voices and touch. It helps show me that she is really in there and that makes me want to fight harder.

Dan and I have been keeping ourselves pretty well occupied. Lots of Words with Friends. We have a game going with each other where all we try to spell are inappropriate words. It's an interesting looking Board and makes me laugh every time I see it. Dan is pretty competitve and I've noticed that my friend Lindsay (who has been playing Dan for awhile) is starting to do the same tactics that he does. He told me to say that if anyone want to play him, they can send a request to DeviousDM (he says the distraction helps). I agree. TyandNaya is mine :) We also are very, very good at Cat's Cradle (You know you remember that from grade school. If not, here's a tutorial with pictures.)

Pray for another stable night and a better tomorrow. We all appreciate the love, prayers and support.


  1. Feels so good to read your writing. Makes us feel like we can actually help support and root for Naya, even when we are far away.

  2. Doctors have an important function. They help us in ways that no one else can. But never let go of your belief or your faith that your daughter will be better. Honesty is often a matter of perception. Doctors often forget how to see health and healing, when their days are filled with illness and suffering. What matters is your knowing inside that Naya is healing and getting stronger. Your energy supports her and provides the environment for her to grow and flourish. We all contribute to the miracle. Accept my families thoughts and prayers of health and healing for you all.