Update on Maya

We didnt get home until 1:30 this morning (we got to the hospital at 4:30am, so it was a long day). Maya was still under sedation when we left. Unfortunately, she isnt metabolizing the drugs quickly. She started waking up but wasnt breathing on top of the ventilator. As long as it breathes for her, they wont extubate her. It's so hard to see her this way. Because we never dealt with the vent in the beginning, watching her take such a step back (even though it wasnt really a setback and was used to help her through surgery). She has two black eyes and looks so helpless. It breaks my heart. I sat by her bedside for all of the day except for when I pumped and went to take care of Bobby. Peter was with her when I wasnt and went to work for half a day after being there all morning and then getting there in the early evening and staying all night. We almost spent the night at the hospital because he thought she might be removed from the vent, but when that became clearly not the case, we went home. It killed me to say that I wanted to go home, but I hadnt slept more than a handful of hours in 48 and my back was having spasms from a poor shoe choice for standing most of the day. I slept a good 4 hours between getting home and now and, honestly, it was so refreshing. After pumping this morning, I was able sleep another hour in between pumps. I know it doesnt sound like much but it really does help and was enough. Once Maya is safely back in her bed, things will be better. But leaving her in isolation is too hard to not stay at the hospital as much as we can.

Another sweet story... Bobby wouldnt take his bottle from me yesterday. He kept making these noises, wanting for Maya to respond. She wasnt there so it was silent. He'd suck a bit and repeat. After a few minutes, he just stopped eating. He just kept lifting his head to look at her bed. Finally, I had to move my chair so we were next to her bed and he just laid his head on my chest and watched. I had to have his feed gavaged and then he fell asleep. He repeated this with Peter, although he did finish his bottle. But he was only calmed by being by Maya's bed. Peter actually took her hat and gave it to him. Then he fell asleep and was calm. I went back in later and he was awake and he kept making his "twinning" noises and would lift and hold himself up to look at her bed, until, once again, I moved next to her bed so that he could watch it. It was so cute... and so sad...

I hope Maya is extubated and returns to her bed today... Thank you for the prayers. Please keep them coming...