Last night I went out to dinner with three special mama friends, whose beautiful kids are similar to Emily medically. We had a good time, although the feeling of guilt was heavy on me. I know going out and trying to relax a bit is good for me, but it is hard not to feel guilty about giving up any time at home with Emily.
She is clearly uncomfortable most of the time she is awake, and gets a lot of medications around the clock. I don't know how much she weighs now, but she is getting more bloated by the day. She has some other weird symptoms that I am sure are to be expected at this point.
Tomorrow morning will be the hardest so far. While Jacob goes out to breakfast with my in-laws, the hospice nurse is coming to do our official intake. We will be making the DNR formal and inquiring about what medical things we can stop. I have already stopped some drugs and daily procedures that are not necessary. Things she hates the most, I am not going to do anymore. Then the day will get harder, as we have a 3:00 appointment at the funeral home and cemetery.
Please pray for Emily's comfort, and also for strength for us. This is incredibly exhausting and heart-breaking. We are soaking in every minute of Emily as we can, and trying to remember to eat/shower/sleep in between.