The front seat

The kids and I came home tonight so Dominic can go to school tomorrow and Thursday. Then we'll head back to Old McDonald again. We're still trying to figure out what the best way is to make this weird lifestyle, where our kids aren't cohabiting, work. As great as it is to have a place where we can all stay at RMH, the reality is that either Jason or I feel we have to be with Cora all the time, and though the kids love visiting her, they start to go nutso after about 15 minutes, max. It's sort of like the airplane phenomenon, where confined space and fear of your kids being loud creates animalistic and embarrassing behaviors. In short, our life is still a juggling act.

The confusion over Cora's echo of last week continues. There is no doubt her heart's squeeze has improved, but the other symptoms of her heart failure really haven't. Still, because her situation is muddied by the recent echo, her doctors and we decided to change her transplant status to 7, or inactive. This means she still accumulates time on the waiting list but she is more or less sidelined for the moment. If Cora needs a transplant then I absolutely want her to get one. But if there is a chance she will improve and not need one, or more importantly, that she would get a transplant and it wouldn't fix the root cause of why she's so sick, then we want to err on the side of caution and wait. Lord knows it is about as dramatic and heroic of a measure as one could take, and something that can't ever be undone, so everyone wants to be very certain it's the right thing to do.

Aside from all that, Cora is definitely struggling today. She spiked a fever early this morning and it has persisted all day. Not sure what caused it but she seems to have some kind of bug or infection. She was also getting pretty anemic, so she got a blood transfusion which I hope will help perk her up a little.

This is has been such a journey of ups and downs. I remember when Cora was going into her open heart surgery back in November. The medical staff told us that recovering from her surgery would be a complete and total roller coaster. That's an analogy that has stuck with me throughout. We sure have had a front row seat on the ride. Although I have to say, mostly there have been downs.

There have been ups of course -- seeing Cora smile, watching her light up when we come in the room. Jason reading The Polar Express to me and all of our children on our own couch, in our own house, on Christmas Eve. Giving Cora a bath in a pink hospital basin one day at UCSF, and watching her face as she took in the feeling of sitting in water, at three months of age, for the first time. And of course the wagon ride and that PT visit the other day when she showed her baby tricks and skills and made me so proud.

But sometimes I really can't help but be sad for all the ups we should have had but haven't, and all the downs that were so down they took a piece of my heart with them.

Sleep tight, my little lionheart. I'm praying for the ups.