Last week we had a positive outlook. This week not so much. On Saturday Scarlet had a set back. Her belly bloated up and her doctors were worried she had an infection. After almost 3 days of blood tests and X rays, it was determined she had gas. It was very discouraging, so I haven't wanted to post. I don't want to get my hopes up. I don't want to talk about it anymore. I don't want to sound too pathetic or ungrateful, but I am starting to lose my ability to stay positive and get excited for any progression.
Every one has asked me how I am, and I will give you the answer. I don't want this to come across as pety, or bitchy, because it's not. I'm not ungrateful or angry or jealous. I do not seek attention or desire pity. I am simply describing my experience.
This has been the most terrible experience of my life. And to be honest, I have been through some $%*@ in my life. I have never felt such helplessness and heartache. I have never been so frusterated and consumed by my need to act. It is difficult to describe how hard it is to watch your defenseless infant struggle. To watch her be stabbed with needles for blood. To stare longingly through the plexi glass of her pod, but not be allowed to touch her for weeks. To not have the oppurtunity or option to hold her, or touch her, or to stop her from crying. To watch a stranger comfort her. To see her weak and watch her cry.
I am heart broken. Yes I know this will end. I know it will resolve and she will come home. But the journey from the beginning to end is a long, hard one.
Do I feel sorry for myself. No. I'm just sad. I don't ask, 'why me'. I know it could be much worse and I'm grateful it's not. I have seen babies come through the NICU with heart problems, one with limbs missing and some that can't breath on their own. I even watched a little boy cling to life and found out later he couldn't cling any longer. He slipped from the world through the night.
I am ready for my family to be together. I'm ready for the emotional upheaval to end. I'm ready for the uncertainty to be over. I don't plan on posting until she can come home. I do not know when that will be. I don't have a guess, and I have to come to the point of not even trying to estimate. Hopefully one day I will be able to have a picture of her at home, with out tubes or wires, and then I will believe it.