7/19/2011 222 Days Old

On the 222nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya slept all through the night last night. I wish that I could say the same for me. When we layed her down I tried to put her monitor on her hand. Normally it does not read acurately due to Maya’s incredible chubby hands, but last night with a new lead installed we were able to get a reading. Maya’s sats started out at about 78%, but soon dropped to 65 to 70. Her heart rate was very high between 180 and 195 beats per minute. Her monitor alarms at 65 % oxygen and 210 B.P.M. heart rate. After trying to wait it out to see if her sats would come back up I decided that Erin would not be able to sleep with the alarm sounding all night, and Maya was sleepin comfortably I decided to take the monitor up and I would just stay up with her to make sure she slept OK. I tried to sit on a yoga mat next to her bed with my hand on her chest, but I quickly realized that wasn’t going to work. I went and got our desk chair and tried to sleep once again with one hand in her bed. That was not successful either. So at about 1:00 this morning I woke Erin up and we moved Maya into the bed with us. She stayed asleep through the whole process. With Maya safely in the arms of her mother I was finally able to go to sleep shortly after 1:00.

This morning Erin got up and got ready for wotk and me and Maya moved out to the couch. Maya stayed asleep. I could tell that her breathing was still fast and her heart rate still high, but she stayed comfortably asleep. We passed our morning that way.

At 11:00 I heard a noise coming from where Maya had been nestled in her boppy and looked over to see two beautiful blue eyes looking up at me from just above an open mouth with tongue protruding. Maya was awake. She was awake and happy and making happy baby noises while playing with her tongue. I was so happy to see all this that I immediately called Erin at work. It was difficult for her to leave this morning and I had given her a few updates through the morning hours. Erin got to hear beautiful Maya noises coming through the phone. She stayed awake for an hour and a half before returning to slumber during her 12:30 feeding.

Tonight Grandpa Bob and Grandma Chris came by for dinner. Although I don’t remember seeing grandma eat anything I do remember her holding Maya while the rest of us ate. Shortly after dinner Maya woke up again. Tongue out and eyes open seems to be the way she likes to introduce herself. She stayed awake for a while until her and grandpa found a sleepy spot in the recliner.

It is hard to describe how Maya is doing. On one hand there is Maya’s physical condition. Her heart is working so hard to try and get what little oxygen she can from her lungs, and her breathing is rapid. When I place my hand on her chest I can feel her heart beat fast and hard. I can see by the color of her skin and of her lips that her oxygen levels are not good. We know that she gets so tired that she sleeps for 20 hours of a day.

On the other hand. Through all of those physical problems that Maya is struggling with she finds the strength to open up her eyes interact with us. When she has been resting today she has been comfortable and when she has been awake she has been pretty good too. That was not the case yesterday and may not be the case tomorrow. So Maya had a good day. That doesn’t mean that she is better or she has recovered. It just means that all things considered she did well.

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