Our First Days Home

Lexi was home with us now but still a very sick baby. She had periods several times a day where she would stop breathing and change colors and then start breathing again. Every 3 hours round the clock I spent 30 minutes trying to get her to eat. My happiness was completely wrapped up in how a feeding went. If it went well and she got at least a half of an ounce I would smile and have peace for a couple hours. If she didn't eat or threw up afterwards I would cry. It felt like that was most of the time. Daniel was often irritated with me during these shows of emotion. He felt I shouldn't be having expectations of her that were impossible. It hurt him to see me hurting.

The first few days at home felt very awkward. I didn't know how to take care of Lexi knowing she wasn't aware of me or her surroundings. It was hard to separate what my mind knew from what my eyes saw. I began to just treat her like a regular baby. I talked to her and cuddled her and waved toys in front of her face. I dressed her up in cute outfits and took lots of pictures, deleting any where she looked sick. I was bonding more with her every day.

Lexi needed me and that got me through. I pushed away the fearful thoughts of death and what would happen if she did survive. We still believed she had no brain activity. What kind of future could she possible have?

I relied a lot on the hospice nurse. I could call her any time with my questions or concerns and she would come. Her presence was a huge comfort. Her solutions were always the same. She told us to give Lexi Morphine.

I wasn't able to give her the medicine at first. With my fanatical care though Lexi was beginning to gain weight and as she got stronger she was very unhappy. She screamed and cried for hours every day. I would say she put in a minimum of 8 hours a day of screaming during that time. We didn't know why she was crying and my fear was that she was in pain. I was told that babies with brain damage tend to be very irritable.

We started giving her Morphine and it helped a lot. She was much calmer and we noticed she breathed much better on it. For a little bit we survived with our routine of taking care of a newborn that was extremely fussy and turned blue once in a while. She started eating more. She was clearly sucking the bottle and getting a couple ounces of milk each time. She still threw up after most meals. We lived with the thought that she could go any time but we had our doubts now.