A very wonderful day, complete with a wagon ride

Today Cora was evaluated by a physical therapist. I was so proud of her! She showed off all her wonderful baby behaviors, like making great eye contact, tracking people, voices and toys. She smiled at me and cooed at the right time. The PT said she is right on track for social interactions, and just a few weeks behind on her movement and coordination. What a clever and talented girl! To have spent so much of her life in a hospital crib, so much time sick and sedated or intubated, and to still keep up with most of the normal baby milestones. I could not have been more proud of her if she'd gotten into Harvard! It may not sound like much, but it was a great moment in a long series of really pathetically terrible ones.

The next wonderful moment happened when Jason got to take Cora on a "field trip," which consisted of a wagon ride through the CVICU unit. I asked this morning during rounds if we could take Cora for an adventure, and although they kind of laughed at me, they eventually said yes. That to start with, we could walk around the unit, and then maybe at some point even outside the unit. This makes me so incredibly happy.

I had to leave to get the other kids, but Jason led the walk with Cora in a red wagon. He said she looked around with curiosity as they strolled through the halls, and then they stopped by a window to soak in the sun. It was a beautiful warm day. A little girl, another patient, even came out of her room to see Cora. I feel so rich and grateful that she got this experience today.

Meanwhile on the home front, Dominic and Cosette, my little antidepressants, did their part to make my day. As soon as I saw them, Cosie told me she loves me so much, and Dom gave me the bear hug of the century. After Cosie went to bed, Dom and I played Buzz Lightyear versus the Evil Emperor Zurg. Then we united forces against all the bad guy figurines and shot them with Nerf shooters until, one by one, they plummeted down to the carpet below. A perfect night where good was victorious.

As usual, Dominic baffles me with his deep intuition and understanding. While I was writing the first part of this blog entry tonight about being proud of Cora, he walked out of his room (where he was supposed to be sleeping) and asked, "mommy, are you proud of me?" I swear, he has proven to me so many times that he is an old soul, that when he says things like that I just smile.

I am so proud of him and his wise, sensitive and sweet natured little self. I am so proud of Cora and how each day she peacefully wins her fight. And I am so proud of Cosie and her fierce, beautiful nature. I love hearing what she has to say to me now that she's found language. Tonight it was, "Let's all drink pink sparkly water!" Yes, I say. Let's.

Because it was a very good day. Everyone was a little bit joyful. Everyone was safe. And I even got to see Jason for a few hours as we passed our kid batons, and went ahead trying to make this crazy life normal, and even happy.

My little love magnet

Feeling very grounded and grateful tonight. As weird as it was for me to start writing this blog and put myself out there, it has been a pretty amazing experience to see what's come back in return.

I have been so moved by the beautiful comments you've left, and by all the calls, texts and emails from our family and friends, and from people I've never met but who somehow learned about Cora. Most people say they hope it provides some comfort to know they are thinking about us and supporting us through this terrible ordeal. I want you to know, it does. It so, so very much does. I sincerely thank you for reading this, and being one of those people who supports us.

I'm writing this blog because I want to honor Cora, my brave, wise, grounded girl, and in some way, all the other brave boys and girls who are fighting odds and living in hospitals or at home. There are so many mothers and fathers who are trying to put one foot in front of the other after life has turned on its head.

Right now Cora is in a room in the CVICU affectionately called "the pod" with six other babies who have some form of heart problem. When all of them are sleeping or sedated, I imagine their little souls flying up above the roof of this building, having play dates together outside the limits of their flawed bodies. I know Cora is still dear friends with a little baby girl she slept next door to for three months at UCSF, even though they never saw one another.

What gets me through all of this fear and sadness is my connections. The deep and unshakable connection I have with Jason. The bond I feel with our amazing families whose support has no limits; both immediate and extended family -- who I feel loving us all across the country. The connections we share with our dear friends who love us, show up for us, do our dishes, and most importantly make us laugh. The reconnections with old friends we haven't spoken to in years, but who we are deeply grateful to find again.

And new friends. I had very moving conversations today with two other mothers who understand our current lifestyle in a very real way, because they are living it. When I talked to them, I didn't feel sad about our situations. Instead I felt compassion and togetherness with them, and shared strength.

A lot of grace and a lot of beauty today, in the midst of advanced heart failure and everything else we live with here.

Cora Shabora showed her best self for a while tonight. My friend was here meeting her for the first time and got to see her huge smiles, and her delight as we made faces and spoke in weird googly voices. She kicked around, just like any other baby. She smiled at her lion.

I am so grateful for Cora and her strong spirit. She is a magnet of love, and because of her, it surrounds us.

Conversations about the Berlin, pacemaker, and other things

Cora started off today having a bit of a rough morning, but they adjusted her calorie count and one of her medication doses and she seemed to perk up.

Her heart tricks continued and she spent most of the day in her blocked rhythm, presenting new arrhythmias mixed in with her normal crazy ones. For a large majority of the day she had doctors gathered at the bedside staring at her monitors with perplexed looks on their faces. It's amazing and humbling to be at one of the world's premier pediatric heart centers and still be able to baffle people, but Cora has that special gift.

As we wait for a heart to become available for her, we still have a lot in front of us. There are many conversations about the possibility of putting Cora on a Berlin Heart, which is a type of ventricular assist device, or "VAD." If Cora was bigger she would likely already be on one because her heart is very sick and it would greatly help her. Unfortunately she is just so small (just 7 pounds now) that doctors worry the risk would outweigh the benefit. Stanford has never used a Berlin on someone Cora's size. That said we may need to consider it at some point between now and transplant, if Cora gets worse.

We also have regular conversations about the potential need for a pacemaker because of her heart block and rhythm issues. Again, her size and the fragile state she's in give everyone pause in considering these options.

Any one of these things would be such a big thing to contemplate in and of itself, but these are the things we're discussing all day long. These and so many other terrible topics.

Sometimes it just becomes too much and I feel so sad for the life we were supposed to be living, the one in my mind, that I desperately wanted us to be living. And I am so disappointed in the limits I have as Cora's mother. The choices I have are so terrible. I want the choice between having a child who lives in an ICU or having a healthy child. The choice to move ahead with transplant or the choice to take Cora home and have her live, healthy as a horse, until she is 95. But I don't get any of these choices, and instead am stuck with the crappy choices where no one thing seems joyful or much worth choosing.

I just had a kind doctor stop by to talk to me for the better part of an hour about just how hard this situation is. I know he genuinely wishes he could make things better, but he, as well as all the doctors here and everywhere, as well as me and all the parents here and everywhere, are all just running into the limits of what we can do. All I am left with after all the frustration is what I can do -- love the bejesus out of my three kids, pray for intuition, and trust that we are being taken care of, even when we don't understand how.

Officially on the list

We went to meet with a couple of the doctors at UCSF today who have consistently provided us with their wise counsel through this ordeal. Meeting with them reminded me how grateful I am to them and to all the doctors and nurses who have not only cared for Cora, but who have connected with her and with us. Everywhere she's been she's left a trail of love.

Anyway, after we got back to Packard, and without very much fanfare at all, one of the nurse practitioners stopped by to let us know that Cora had officially been listed for transplant. So I guess you could call today, Day 1.

For those that haven't been immersed in the transplant world, let me share my understanding of how it works. Every child in the country waiting for a heart is listed on a national registry maintained by one organization (UNOS). The country is divided into regions, and within our west coast region the only pediatric heart transplant centers are Stanford, UCLA and Loma Linda. Each child on the list is ranked based on her acuity and on her time on the list. (Cora is ranked as 1A for acuity because she is in an ICU and dependent on multiple IV medicines.) When a heart Cora's size becomes available in our region, UNOS will go down the list, one by one, until a match is made. What we know for certain is that Cora is the only baby her size on the list at Stanford, but we won't ever be able to know if there are babies her size waiting at the other facilities. Anyway, when there is a match for her we will get a call and then we will be onto the next chapter of this crazy story.

Tonight Cora's heart is doing all kinds of funky things as I type this. We've become very accustomed to the sound of her heart beating on the monitor, the different patterns her arrhythmias take -- these things have been the background noise of our life for the last nearly four months. Every time I hear a beep I am reassured. Every time there is a not-normal-length pause, I'm afraid. I am just thinking about how much faith this all requires. With her heart block, sometimes it takes a second for the next beat to come, but I just have to believe and expect that it will.

A load of ten-pound weights

[The word on the street is that it's very difficult or near impossible to comment on this blog. If you've been frustrated or cursing at your phone, I'm sorry about that. (For what it's worth, I think you can only comment from a computer? Not from a phone?) Anyway...]

Cora had a so-so day today. One of the things that's complicating her condition is that she has developed heart block, which basically means that for every beat her heart is trying to generate, only about half are actually being conducted. A dangerous condition for anyone, but especially someone who already has a terrible squeeze of her heart. (If you can't squeeze a lot of blood on each beat, you need a lot of beats to compensate.) In addition to just blocking, her heart also does what I call "tricks." Crazy arrhythmias, weird patterns and, in general, things that are scary. Because no one really understands the cause of her heart block, and because it keeps changing patterns, people worry. I worry.

I live with the worry that Cora's heart will just stop. 

Last night I was sitting on the couch ready to settle into some mind-numbing Top Chef when I got a message from Jay that Cora had presented a new pattern. They were doing a gas (which is when they draw labs to measure her blood gases) and taking an EKG to learn more. No matter how many times we've seen Cora do something worrisome that required further looking into, no matter how many times some drama necessitated a good ten medical practitioners to gather around her bedside, it still sinks my gut. 

You see, there is this hole in my gut. I got it the night Cora was born and they took her to the NICU. The room had the eerily quiet sound of all our euphoria falling flat on its face. No crying baby, nothing to say. That kind of let down made a hole in me. Some days and some moments, it's small, just quietly being there. But then there are those moments when the spooky stuff happens, and the hole gets bigger and heavier. Each time that happens it eats another ten-pound weight. And most of the time it amazes me that I can hoist myself to stand up with all those weights living in there.

That's what it feels like a lot of the time. But this girl has an amazing ability to go right to the edge, peer over and lose her balance, then right herself and come back. And Dom and Cosie and Jason unload those weights, just by being them, when the load gets too heavy.

Cora was okay for last night, and she has been okay-ish today. Everything I fear is what could have happened had she slipped off that edge, or what might happen later if she does.

For tonight, Jay is there with her and I am with the kids, and everyone is safe. In fact Jay just sent me a picture of Cora oogling at one of our friends who is there holding her. Cora has a big smile on her face. I'm sure our friend has an even bigger one. She is making everyone feel better, mostly me, even now, as she always does.

The Road

We learned today that Cora has been accepted into the heart transplant program at Stanford. They have been running copious tests since we arrived -- medical, psychological, you name it. Evaluations by every specialty team under the sun. Taking all the information into account, Cora was presented at the heart failure and transplant conference today and the team agreed unanimously to approve her.

Not sure exactly how I feel about this.

Last night, knowing the decision was looming, I worried so much that they would decline her. More than anything, as a parent, you just want more things to try. You want more roads, even if the roads are long, uncertain, uphill, and scary. The worst thing is the End of the Road. So I am immensely grateful for more miles of road in front of us, but I would be lying to say I was excited or thrilled about it. What I mostly feel is heavy.

I keep thinking that at some point in the not-too-distant future someone will take my child to an operating room and remove her heart. They'll give her a heart that is right now safely tucked inside another child. And after that, Cora will face a lifetime of heart biopsies, medications, and potential complications. But -- a lifetime -- at least she could have one. What can I possibly say or feel about any of this? Just put one foot in front of the other, I suppose.

Today I picked up Dominic and Cosette from Grammie and Papa's to spend the weekend with them. Somehow they've grown and gotten smarter since I saw them on Wednesday. In conversation, Dom used the expression, "at some point." My little college professor. What four year old boy says, "at some point?" Their little presences give me so much strength, but as I gave them a bath I couldn't help but think that Cora should be here. I think if she could just soak in a few minutes of that crazy laughter and goofy conversation, she would be better.

If you are out there reading this, I hope you will post a comment. Even if you have nothing to say. It makes me feel better to know Cora lives in the hearts of many. I picture her little spirit floating around with so many of you, seeing the world through your eyes until she can see it for herself. I picture her lightening your souls.

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.