How can one do it all during a time of crisis? When your baby is at the mercy of their health condition and need help to survive, the best place of care is inside the four walls of hospital. 7 years ago, I was Kaiser Roseville, and lived in the NICU for my child. It was almost like it was yesterday, and the memories never leave. It comes and goes and sometimes, the familiar triggers, can set me off into quiet tears.
Now, if I can offer some solace, here it is:
It does get better. It seems slow with improvement at times because we are desperate for normalcy. There is nothing wrong with a new normal. I wanted to so much just take my child and wish our family back to normal when we were in so much uncertainty. With that, it created resistance with my emotions and it wore me out. If I had realized not to fight with what was, and just go with what is in a positive light, I would have been able to see things a lot quicker that would have benefitted the family earlier on. With time, it does get better, and you will have a new manageable new normal.
In the thick of it, it seems like you are running in circles. Keep a journal - notate everything. From what is bothering you, your child's daily schedule, medicine schedule, your family's well being, what you hope for, timelines, - empty it all out on paper. This will provide a little clarity and help when you are so dead beat tired, you can barely remember what happened yesterday. For me, notating the medicines and schedules, helped with clearly identifying what worked for my child and what didn't. As much as we rely on our nurses and doctors, it is the parents pro-activeness that takes the lead in care. The journal is your record of goes on daily in hospice care, and it will become a history book for this period in time.
Do not try to do it all. I know that you want to, but you will only end up shortchanging yourself. Ask for help. People are here to help and sometimes they just don't know how to ask in this situation. Help is always around. Ask for it. You need a nap, take it. You need a shower, go do it. I recall losing so much of my hair during my time in NICU, when I was in Children's Hospital of Philadelphia, that I just wanted to shave it all off because I had no time for even a hair wash. But it was under all the stress that my body was failing. I couldn't do that to my child, to have a mom who wasn't caring for herself and miles away from family. So I began to ask for help. I asked for one hour nap and the nurses were so happy as I was so stubborn to do it all. The couldn't force my self care, I had to do it on my own.
Pray. Every. Single. Minute or moment. Even a whisper. Pray. Praying is for your soul. It kept me going on my path of despair. I had faith that something about my child - a miracle and I just needed to be faithful to keep going for her, but I could not do it alone. Faith is truly believe that no matter the outcome, it will be for good.
This is what I can offer you - my experience of my path. We came out a bit scathed, but we are blessed and here with a new normal.