The Never-ending Gobstopper

We just got back from down south. I really had such a wonderful time with the kids, and I loved being able to spend solid time, engaged time with them and everyone having such fun. This morning I started to feel incredibly uncomfortable, right around the time Cora went in for her procedure. I questioned why I was gone and felt out of my mind that I wasn't near her. But then the kids lured me back into the present with their funny, loving and overall wonderful selves and I was so glad we were able to have that experience together. As Jay said, I was doing my job of keeping them happy; he was good with Cora. I will go down to Stanford early tomorrow morning and join him as we sort through the next few days.

Cora made it through her cath and did very well. Jason was there at the hospital and by her side every possible minute before and after. The procedure produced a lot of information, but much of it we really don't understand yet. Of the things we do understand, one is that the pressures in her heart were very reassuring. This confirms that her heart has dramatically recovered from its terrible function, at least for now. It therefore also confirms that she does not need a transplant at this point.

Unfortunately the other thing we understand after the electrophysiology study today is that her heart's conduction system is very sick, so much so that it is insufficient to sustain her. They were able to ascertain that the type of heart block she has is very serious and puts her at risk for a sudden "event," which is the gentle term doctors use for cardiac arrest. This means that Cora will need a pacemaker in the very near future -- like the next week or two, as we understand it. Putting in a pacemaker means another open heart surgery for Cora, which lodges a big knot into my stomach.

The doctors also noted some other serious problems with the way Cora's heart functions, but we don't understand those as well yet. We will need to have many follow up conversations with the doctors at Stanford, and with Cora's primary cardiologist at UCSF in order to really digest everything.

So although on the one hand not needing to pursue transplant at this point is a huge relief, it does appear that the road is stretching a bit longer. And at minimum, discharge is off the table for now. I'm sure we'll get there, but first we need to get through the surgery, and then we will need to consult with some other specialists in other areas to tease out all the issues which have come to light.

I was talking with a friend tonight about how, mostly, things for Cora seem like one big, giant, continuous ball of sucky-ness. It's like a never-ending Gobstopper. Now matter how long it goes on, it just keeps sucking. Yes, there are different colors and textures, but you're still stuck with the same old Gobstopper, and you can never seem to get to the bottom of it.

If you  haven't noticed by now, I like analogies. They help me manage life.

Poor Cora. Of course the hardest thing about all of it is accepting all the awful things she has had to endure already in her five months of life. I hate standing by and handing her over for one more thing, to one more person. It is truly heartbreaking. I feel like it's impossible to protect my sweet girl. That she will never be able to get back on track and on with the beautiful business of life. But that line of thinking leads nowhere.

All the big questions I love to ponder will be answered in time, just not in my time. 

I have to come back to the now and protect her in the small ways I can: being there, holding her, surrounding her by visitors who love her, wrapping her in special blankets, decorating her room with a zillion guardian stuffed animals, trying to show her she isn't alone and that she is so beyond loved. 

That's really all I can do.