Today was the hardest day by far. I don't think I've ever felt so helpless in my entire life. I think reality is starting to sink in and I feel like I am going to cave.
The reality of Scarlett having a syndrome is hitting me and Jon. I still have hope that if her brain hemorrhaging heals, she will improve, but that is not very likely. After talking to Dr. Simmons today and having him point out all the things wrong with her, I just felt hopeless.
Dr. Simmons decided to remove her ET tube today. It didn't go so well. Her airway is still floppy and she couldn't get air to pass through it very well, so he intibated her again. This time with a larger tube so she could intake more oxygen. He was also going to order an X-ray of her lungs and leg and take more pictures of her to send to the geneticist to see if he knew what was wrong with her.
We came home this afternoon and I made the mistake of researching Myotonic Dystrophy. It seems like Scarlett symptoms match up pretty well to this syndrome. I didn't want to believe it.
Tonight I asked the nurses at the NICU if they've ever seen babies like Scarlett and they said they do about once a year. One baby in particular had Myontonic Dystrophy and many of the other ones died.
Tonight as I was holding Scarlett, I felt sad, hopeless and distant from her. I felt like I didn't know whose baby this was.
She started to spit up and milk was pouring out of her nose. I didn't know what to do. I didn't know how to help my baby. The nurses came over and helped clean her up and we moved her back to her bed. After the nurses left, I quickly prayed to Heavenly Father. Why was I having these feelings? Help me understand. I didn't want to leave the NICU until I felt that love I had for Scarlett this morning. It took a minute, but after looking into her eyes and soothing her back to sleep, I couldn't help but love her, more than I had before. I realized that the way I would have to bond with her was going to have to be different than I bonded with my other babies. It's true that I could only see her a couple times a day, but during those times I would be able to enjoy just her without any distractions and I could also call the NICU whenever I wanted to check up on her. I couldn't nurse her, but I was pumping and my milk was still getting to her. I couldn't hold her anytime I wanted, but I could still sing to her and hold her little hand. I would just have to show her my love in different ways.
I came home tonight and cried my eyes out. I don't think Jon has ever seen me that way. He started telling me things I needed to hear in that moment. He told me that children with handicapps are innocent, that they must have been so faithful in the preexistence that they didn't need to be tested. All they needed was to come to earth and get a body. That made me look at Scarlett in a whole new light. How humbling it felt to have her as my daughter and how grateful I am that Heavenly Father would choose to send her to our family.
I love my Scarlett and I can only imagine, my love will grow stronger each day for her. I don't think my heart has ever felt so full of love as I think of her.
