Moving On Up

We spent a few more days in the CICU, making small steps each day. Clara had her breathing tube removed Monday and I finally saw most of her face, for the first time!

Todd and I received training on infant CPR and the fear of our situation became a little bit more real. I know that any kid, any time, can be in danger of choking or getting hurt or having their heart stop. But Clara had actually had her heart stopped, on purpose, for a significant amount of time. This made me feel very vulnerable on her behalf, and I realized that this baby had come to us for a reason, and we had a very real responsibility to take care of her. Was this really a good idea?
Each day she was getting a little better and each day I beat myself up over not spending enough time with her, not getting enough sleep, not doing any dishes. Todd kept me grounded and let me cry when I needed, but also keeping me cheered up and not feeling too overwhelmed. We visited Clara as much as we could, and were so proud of her strength.
There's no way to describe the ups and downs of having a baby in this situation. We continued to be so grateful for the knowledge of Clara's heart condition and the 22q deletion before she was born, it helped set reasonable expectations about what would happen, chronologically at least. But it is hard to prepare yourself for the less tangible things: how excited you will be to see your baby's face after almost a week after delivery; how hard it is when you feel you have to get permission before touching her face; how upset you will get when you realize that you don't know anything about your daughter. I couldn't answer questions from my mom or sister about how she slept, if her umbilical cord had fallen off, if she was gaining weight. I'm a first time mom, I don't even know what stuff to ask, and half the time, I'm not sure who to ask-a nurse,  doctor, her pediatrician? I knew this was temporary, that she would eventually come home and no one would know her the way her mom would, it broke my heart a little bit each time someone asked me about her and I had to say "I don't know..."
I finally got a bit of peace on Wednesday. Without any doctor's orders, any time we wanted, Todd and I could hold Clara again. She still had a few invasive lines in, so it wasn't easy but it was so soothing. During  shift change, we celebrated her progress by going out to dinner, just the two of us. We returned to the hospital and snuggled with our daughter. It was so right and finally helped me feel more like a mom. It was still a long way from having her at home with us, without an audience of nurses and doctors, but it was a step in the right direction. And Thursday morning, we got the next good piece of news-Clara had graduated from the CICU and would be moved to the surgical recovery unit, 1 floor up and 1 step closer to home!