The ups and downs of the end of life...

Yesterday and the day before, Julia was a new baby. She was bright eyed and alert and stronger. A true gift! A stark contrast to how she was the day we brought her home from the hospital last Saturday. She was limp and weak and not looking good at all. It was like I had my baby back the past 2 days. Yesterday, when we went to see the cardiologist on the heart failure team at Lucile Packard Children's hospital, even they were pleasantly surprised to see how well she looked. They suggested that we think long term until Julia gives us reason to think otherwise. However, yesterday late afternoon, Julia became very agitated. She was not very consolable. Her respiratory rate had significantly increased and her breathing was more labored. I tried to give her some anti-anxiety medication and that helped just a bit. As the night progressed and she continued to be agitated, I gave her some methadone. That seemed to help a bit. I had to give her a second dose of that at 4am this morning. Her respiratory rate continued to be high even in the middle of the night. Then this morning when I woke up, her respiratory rate had decreased significantly, but her breaths are much more shallow. She has been sleeping all day and is rather limp. The hospice nurse came by this morning. She said it could be closer to the end and Julia could just be tiring out. She said that when people are near death, they can sometimes rally and seem to make a small comeback before their body finally gives out. With children it is much more unpredictable. It is so emotionally so exhausting and draining. I am so tired- both physically and emotionally. So I don't know how long we have. She doesn't look great. Saturday is Bob and my wedding anniversary... I am hoping that she holds out until after that.