Even though yesterday should have been such a good day, I had a really difficult time. I had been waiting for her cardiologist all week to come and talk to us. When the nurse told me that Lucy didn't have an appointment until the middle of next month I panicked. I lost it and began bawling. A nurse practitioner came in and said, "I am a wealth of knowledge. Anything you need to know I can answer." She was wrong. She didn't know anything. One of my biggest questions was about her next surgery. We were expecting her to have surgery the beginning of next year but no one had said anything to us about what we could expect now. The cardiologist that was on call was nearby and she came to talk to us which I really appreciated. She told us we could expect Lucy to go another year without needing surgery. This is good because it will allow time for her heart to grow. Before Lucy had surgery her ox sats were in the high 70s, the day we left they were in the low 90s. She told me that those numbers would continue to drop and as they dropped they would be one indicator of when Lucy needed to be operated on again. She said we were going to continue to see Hazel getting bigger and bigger than Lucy. In the spring Lucy will need another cardiac cath (she's had two already) to look at her heart.
There is something about knowing that my daughter is not "fixed" that is eating me up. I know it's good that we can push back the surgery but how do you put a toddler through something like that? We can't lift Lucy up from her armpits for a month. She seems so uncomfortable. How are you supposed to keep a toddler from moving around?
Jack is loving having his family back. He still gets really nervous whenever the front door opens thinking we're all going to leave him. Lucy looks good. Yesterday my mom kept saying how much she looked like Hazel. We realized it's because Lucy isn't so blue anymore. It struck me today that Lucy was in the hospital the same amount of time as her uncle was on earth. He was my little brother who died of a heart condition. We have a lot to be thankful for. I have my moments where I forget that.