Days with Lucy were exhausting both mentally and emotionally while Connor napped and fed. Lucy was cared for by an awesome staff, while I slept through the night at home. Connor's night schedule is not something to be desired. Almost eight weeks in and I am still trying to adjust.
Lucy's crying was so stressful (even in the hospital). I can still remember my back just getting tight at the first sound of hysterics. Connor's crying is bearable during the day, but at night I still can't handle it. I am sure most of that comes from our experience with Lucy. Lucy's feeding was an exact schedule while I am still trying to figure out Connor. The nice thing is Connor is getting easier a lot quicker than then Lucy.
What I have come to find out though, is whether your child is chronically ill or healthy, a hospital stay is like jail. A chain around your ankle making it almost impossible to leave. Although Connor's stay was much much shorter, those same feelings arose. I had so much trouble leaving his room, even though I know it's healthy for me. Even worse is that this carried over when we left the hospital just like last time. It was hard to do anything except sit at his side. Slowly that has changed and aside from lack of sleep, maternity leave at home is pretty great.
I was even able to squeeze in a newborn photo session. Here are some of my favorites
We had Lucy's cardiology appointment and it was another great one! The whole way to the appointment we practiced what she would say to her cardiologist. He walked in and with a little prompting she said,
"Silly doctor, my hearts just fine"
And to my surprise, she wasn't far off. She was amazing during her echo with no tears and for the most part sat pretty still. Her results: no appointments for six months. I can still hardly believe it as I type it. We don't go back to see the cardiologist until October. OCTOBER! All issues are unchanged from her last appointment. We talked a little about her 3rd surgery and we are still looking at next year. I definitely am not ready for it. I think about keeping her confined to a bed and one room and I can just hear her saying, "walk around. walk around out there". Maybe by the time she is three we will have some fun activities that can keep her sitting for eight plus hours a day. But let's be honest, sedation is going to be our best bet!
We are really excited to enjoy the summer with only one trip back to the hospital in August for the neurodevelopmental clinic. We are hoping that she is caught up in all categories and we can look to stop all therapies. In May, we unofficially graduated from speech and nutrition because we are officially eating like a two year old. Praise God! It's been quite a road, but I am happy to be here. In each moment you never seem to think you'll get there, so it is nice to look back and see her milestones and be grateful for each one. We will be looking to move our annual Early Intervention meeting up to the end of August and hope we can graduate from the program all together.
Lastly, an updated family photo. We got this one much quicker!
