I feel like a broken record when I say that today was the hardest day. So many feelings and emotions are running through my head. I worry so much about my little Scarlett. Questions like: Will she be disabled? will she be healthy? will she live for very long? are running through my mind.
Dr. Simmons "scolded" me today on not worrying about the future because we don't know what it will bring. He told me to focus on the positive- like her feeding were going up, she is able to breath on her own- mostly, her leg is healing and her limbs are loosening up. He is absolutely right. I am just going to have to take things a day at a time and enjoy the accomplishments she is making. I know I can't change Scarlett, and I wouldn't want to if that is how Heavenly Father wants her.
Yesterday, Scarlett had another EEG done and a hearing test as well. The EEG showed she was no longer having seizures, so the phenobarb was helping, and the hearing test showed she couldn't hear out of one ear and partially out of another, but the doctor said not to worry so much about that yet and we would retest later.
I got to hold her again this morning. I loved every moment of it. They almost always feed her my milk while I hold her. She's up to 35ccs now and just needs to make it to 45ccs, but she's been spitting up a lot. They've been worried that she'll aspirate her milk into her lungs so they moved her to a more upright position to see if they could prevent that.
They suctioned out a ton of mucus from her lungs and nose today. My poor Scarlett. That must be so uncomfortable for her. I wish I could take that away from her. The nurses tell me, though, when they suction her out, she coughs, so that is good.
Tonight when we went to see Scarlett, she was breathing really rapidly, like 130 breaths/ minute. I didn't know what was going on and I was afraid. The nurse didn't seem to be too concerned about it, but they drew blood to test for an infection. I didn't want to leave Scarlett tonight until I knew she would be okay. Her nurse gave her a dose of phenobarb while I softly sang to her and stroked her hair. Her breathing seemed to settle down a bit.
Something special happened to me, though, while I was singing to her. I started singing "I am a Child of God" and for once I realized that Scarlett was the one teaching me. She was helping me "find the way". She was teaching me that if I but learn to do His will, I'll live with Him once more" I had never thought of the song that way, where my child was doing the teaching. Tears welled up in my eyes as I sang to her. I know Scarlett is a special little girl.
Our other children bring me so much joy during this time. Some days I feel like I will never know what it's like to be happy again, but then they do something that makes me laugh or say something that makes me realize that no matter what happens with Scarlett, we are a family and we can get through this together.
