Most babies go through the "eat everyone's face" stage, but Cora is not a typical baby, she doesn't explore the world by eating her way through it, and she doesn't usually want anything near her mouth that isn't a binky. But today she had my cheek there, and in her gentle way, she just kind of popped her lips on it like a quiet little kiss. With my ear next to her mouth I could hear her tiny breath over the hum of her oxygen, while her soft sweet baby fingers kind of tapped on my cheeks.
It was pretty special.
They are keeping her there at UC for at least the very near future so as to keep a very close watch on her ins and outs, and to try to get her to gain some consistent weight. She has gained a very small amount over the last few days, so the team is happy. With Cora's "challenged" heart, she is always in some degree of heart failure, the effects of which are managed with her various medications. The goal of her doctors is to manage her failure symptoms as optimally as possible, while simultaneously getting enough calories in her to ensure her growth.
At least that's the plan for now.
It sounds like sometime in the not too distant future they will also want to do another heart catheterization to better understand her persistent need for oxygen and her chronic lung disease. They also want to examine the functions of the heart that her echocardiogram doesn't fully explain. It's possible there is something going on with her heart or lungs which is making it difficult to gain weight. Basically, they would do it in attempt to get answers to some of the questions which, so far, have been unanswerable.
Her primary cardiologist suggested doing the cath procedure this week, but the rest of the team feels that the primary focus should be on weight gain. And any time there is a surgical procedure there is a day of no food, and at least a day of only moderate eating afterward. So we will see, but there is probably a strong argument for waiting on the cath for a couple of weeks to see if she can grow.
Jason took Dominic and Cosette to the beach today, while I hung with Cora. Our parallel lives continued for another day. But tonight we met with some friends for dinner while another friend of mine stayed at the hospital.
As much as I enjoy the luxury of the four of us being together, I always feel that something is missing, which of course it is. That little soul full of light. Our little baby glue who silently pieces us all together. Without her here, no matter how happy I feel in any moment, there is stress three inches beneath the surface. My fuse is short. I do my best; we all do. But the more tastes I've had of us all being together, the more bitter it is to be apart.
My heart goes out to you and your family. I have read a few of your blogs and I hope there will be that one day where the doctors will find out whats wrong and it will fix everything. I really wish you and your family well. I know we barely know each other but you were one of those girl's I looked up to when in was first coming around. Who gave me hope that maybe there was something better.
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