The Long, Lonely Walk

As I walked to the hospital on shabbos this week I reflected on my walk last week. There was a spring in my step, a happiness to it. I felt sure that it was the last time I would be making that walk. I was certain that the following week we would be lighting the shabbos candles with our little girl safely tucked away in our home.

It was not to be.

As I made the walk this week it felt a little longer, a little more lonely. I wanted to see my baby, to hold her. I also knew that if I didn't go she would not have enough to eat. However, a part of me didn't want to go, or more accurately, didn't want to have to go.

We have come a long way. Sometimes its hard to see that. A good friend, who happens to be a neonatologist, pointed out the other day that we are no longer talking about chances of survival.  Baruch Hashem (Praise G-d). While this is so frustrating for us and some days are so hard. It sometimes helps to know that we are at least past the question of "Will she live? Will she make it?"

Her nurse the other night was one of the nurses who was on duty when she was born. She told me what they hadn't told me until now. Apparently, the beginning was a lot more touch and go then I had thought. She really had a very rough start. It made me look at our daughter, our tiny baby girl with a new respect. She is a true fighter. I hope that spirit will help with the challenges ahead.

We got a lot of new information this week. Some of it was encouraging and some a little hard to swallow. Her pulminologist said that at this point, he expects her to need the machine for at least a couple possibly several more months before she can be moved to just oxygen. Her BPD is severe and could affect her life greatly until she is 5 and may affect her in some ways until she is 16-18 years old. She is also having trouble eating. Her vomiting has increased a lot and she is not gaining any weight. The doctors restarted her on the antibiotics to try to help her digest her food. She is being given a new additive to try to help with her weight. Unfortunately, she is simply very uncomfortable and has been crying a lot.

I wish there was more I could do to help her. I wish there was a way I could take her in my arms and make everything better. Until then, I will continue the long, lonely walk of the NICU mother.