What it's been like...

A friend recently told me that the last millennium was all about the hero's journey -- the theme of one courageous person saving himself or everyone else (think, Luke Skywalker). She said this millennium is about a community of heroes; about how much we all need each other to come out victorious.

This is how I see Cora's journey.

Some people say, "Cora is a fighter," but I don't see her quite like that. I think her special magic quality is her ability to bring people together. I see it in the way she makes people who visit her feel calm and faithful. I see it when people I haven't seen or heard from in years suddenly reach out to me and feel inspired by her. That's why I wanted to start sharing her experience a little more broadly and in this forum. My hope is that Cora moves you a little (or a lot), and that she can help ground us and bring a little of that powerful mojo that comes about when you are truly in it together.

For those that don't know, Cora was born on November 6th at Marin General and she more or less hasn't had an easy moment since she entered the world. She was a full-term baby, but for some reason it took her more than three minutes to take her first breath. In the delivery room she was "bagged," rushed from the room, and then landed herself in the NICU needing some respiratory support. Though she improved rapidly in those first days, on her second night of life it was discovered that Cora had a large VSD (hole in the heart) and something called coarctation of the aorta (which basically means her aorta was too narrow.) She was immediately started on a lifesaving drug, rushed to UCSF, and placed on a ventilator. We were told that Cora's coarctation was so severe that if she hadn't been diagnosed at that point, she very well could have died that night. A humbling reality.

A week later Cora underwent open heart surgery to correct these defects. Being so little, and her heart having been so swollen, surgeons had to leave her chest open to heal. It stayed open for a week. Seeing Cora's little heart beating, right there in front of me, is a visual I will never forget. I would stare at it in awe, being so grateful for the strength of that little organ that could go through so much in surgery and -- just moments later -- take over its job of running the entire body.

Cora had some hurdles in that recovery but she made her way, and five weeks after she entered this world, she was finally discharged. At that point she was given more or less a clean bill of health. She still needed some oxygen and a feeding tube, but these measures were temporary, and we had every expectation that she would improve.

We treasured our time at home but it was not without its challenges. After a week Cora began to struggle. We then began a scary process of going in and out of the hospital trying to figure out why our little girl seemed so sick. Finally on December 28th we checked into Marin General and they took one look at Cora, and seeing how sick she had become, transported us to UCSF. We haven't left a hospital since then.

Just a few days in, Cora was diagnosed with heart failure. The crushing blow was that this had nothing to do with her surgery or previous diagnosis. A completely separate, much more serious problem. In other words, the crappiest luck imaginable. A heart biopsy revealed the cause of her heart failure to be dilated cardiomyopathy. This basically means the tissue of the heart itself is bad and can't squeeze well. More or less the worst diagnosis one can receive because, barring an Act of God, there is virtually no chance of recovery.

A week and a half ago we transferred from UCSF to Stanford, where they have a dedicated heart failure team who we hoped could shed some new light on Cora's condition. Since we arrived she has taken a bit of a turn, and her heart is showing just how sick it is.

Jason and I have been told many times that Cora cannot survive very long with this heart. We have been asked on many occasions if we would like doctors to try to revive her if she goes into cardiac arrest. So many questions and discussions that would be so much more appropriate if we were talking about a grandparent or someone who had lived even part of a full life. So offensive and bitterly sad for my innocent and perfect little girl who hasn't lived a day without a tube or a medication. She has barely had a chance.

At the same time that I desperately want things to go my way, Cora's way, I also deeply believe in a loving god who can understand this situation far better than I can. And though most of this is sadder than words could tell, there is still a lot of joy, we still laugh, and life still seems overall a good and generous thing when we look at how rich we are in family, in friends, in love.

Cora is sleeping right now, looking like any other angel baby, and completely unfazed by the beeps and alarms that surround her. And yes, she has her lion right next to her.