It will be okay

It was my night to be at the hospital last night with Cora and it was a pretty rough one. Something was really bothering her and her breathing was faster and more labored. She ended up being awake from about midnight until 5:30am. She still seemed to be working with her breathing as the day went on so they added back one of the medications they had planned to cut, and they'll get a chest x-ray in the morning to see if her lungs seem to be gathering more fluid.

Overall I'd describe her mood today as rather blah. She didn't seem to feel too well and didn't want to play. Maybe it's indicative of something medically, or maybe she just wasn't "feeling it" today. Lord knows I have those days.

They made a few other changes to meds and things today. Cora's electrophysiologist also came with his large magnet device and tweaked the settings on her pacemaker once again, since it's been going off quite often and seems to be agitating her a bit. Now where we've landed after many tweaks to the settings, is that the pacemaker is truly only being used in fail safe mode -- only if she takes an excessively long pause between beats, or if her rate drops below a certain number. Other than that they will let her roll with all the crazy arrhythmias her heart block presents. No matter how much they've tried to get her to beat faster or in a more coordinated way, she just wants to do her own thing. I think that much is clear. And now that we have the pacemaker in place for emergencies we can all breathe a bit more easily watching her heart beat to its own cooky drum.

In other news, I quasi went back to work, starting today. Luckily I work for an extremely flexible and supportive company and am able to start slowly and at a pace that works for our family, but it felt strange all the same. The entire time I've been off I've held the belief that sometime soon things would "wrap up," at which point I would return to my job and back to reality. Going in today without much thought, planning, or fanfare, was simply an acceptance of the fact that this is unlikely to wrap up neatly anytime soon, and today seemed just as good as any day to to try to make this crazy circumstance work as a part of our life. A life where there are still bills to be paid, and where a very pesky conveyor belt continuously schleps life's logistics ever toward us.

So I went to work for a few hours of meetings and then returned to the hospital room to do a few more hours of work from there. It felt weird to type away, stationed right next to Cora but paying very little attention to her. I guess it made me realize just how much time I spend standing over her crib or holding her, practicing her little physical therapy tricks, ogling over how cute she is, or more often, looking for signs that she's gotten either better or worse. I wonder if Cora knows that the bright side of this all is that she gets a LOT of attention for a third child.

In any case I now have my first day of real juggling under my belt. Well you could argue that I have been juggling for months now, so it may be more appropriate to say I added another ball to the mix today.

Anyway, I'm rambling. But I just have to share one more thing.

Dominic is in a phase right now where he is worried about everything. If you have ever read the children's book, "Wemberly Worried," you will have an idea of what it's like to live with him. Just tonight he said, "I wish glass didn't have to break," "I wish sharp things didn't hurt people," and, "what if a shark eats the fish that Daddy and I are going to catch one day?" Even though I wish he didn't have a care in the world, there's something so endearing about his sensitivity and concern for everything around him.

He's working on going to sleep right now and I can hear him in his room saying, and I'm quoting directly, "Cora, I know you want to be here right now, but you're not, and that's okay. It will be okay."