A year

I haven’t updated in a while, and I am sorry to leave anyone hanging! Anya had c-diff, an infection of the intestine, and it probably was causing some of the problems she was having. At one point she was nearly intubated again but she went on bipap instead, it is a mask that can give a lot of pressure. We were home for about ten days or so and then she started having more desaturations, so she was admitted again. This time was only 48 hours, a pit stop compared to what we usually go through.

She had some wheezing and an ear infection. Antibiotics, steroids, and nebulizer treatments have straightened her out and I am hopeful that the home nebulizer treatments will help keep her home longer. We are getting closer to spring and with winter ending there shouldn’t be as many bugs to catch.

I got to talk to Dr. Kays at one point and it turns out that Anya is way too big. Not fat, just too big. She is 50^th percentile and it would be better for her to be in the 5^th percentile or less. Counterintuitive as it sounds it makes sense. The bigger you are the more you have to breathe to support all that body. the more you eat the more CO2 is made, and the lungs need to get rid of that. Anya’s lungs are not developed enough to do all of this for the body she has right now.

Anya’s calorie goals were cut down, and she has been doing well with it. She has started eating baby food; two tablespoons at a time. She gets excited about food and enjoys the different flavors, and is behaving much like Arwen did when she was just starting baby food. Anya is also putting everything in her mouth, most of her aversions appear to be gone, but she still will not take a bottle!

We are right at a year since this roller coaster got started. February 15^th, 2012 I waited on an exam table to learn that my unborn child had a life threatening condition. One year since Adam got home on a red eye from Las Vegas and I pretended to be asleep, because I didn’t know what to say or how to deal with his reaction, since I couldn’t work through my own. One year since I hid Arwen’s baby sibling books because I couldn’t figure out a way of telling her we might not bring a baby home. One year of heartbreak, pain, frustration, fear, exhaustion. Slowly it turned into a year of blessings, joy, triumph, and different forms of exhaustion.

One day all of this is going to catch up with me, and I will have a nervous breakdown. No doubt it will be fantastic. Right now however the emotions of a year ago are too close. Comparing where we were to where we are now, watching the wonder of Anya’s story develop, I am unable to allow myself to wallow in negative emotions. Well, at least not too much. Yes everything is insane, I constantly feel like I am forgetting something essential, I hardly know what it is to relax without leaving something undone. Be that as it may this is exactly where I hoped we would be a year ago when I pled with God.

Not all of you know but February 15^th is another anniversary for me. This year it marks the fourteenth year since my mother died from lung cancer. She was 42 and I was 18, and I always will remember how she handled herself after she was diagnosed. One day she found a verse from scripture in a frame, and brought it home. I thought she was a little bit crazy, to be diagnosed with terminal cancer and have this verse as a motto:

In everything give thanks; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:18

I guess I am crazy too, because it makes sense to me now.