Make it Work

Jason's Italian mother and his aunties put out the most incredible spread for every holiday, and today was no exception. There is always enough food for at least three times the number of people in attendance (which today was just over 40.) We had such a great day over there eating, talking, hunting for eggs, and enjoying our family and friends. As usual, I was reminded how hugely I scored in the family department -- both mine and Jason's are 100% grade A, top notch, amazing people we feel blessed to be around.

Yesterday Dom asked me why we hadn't made a list for the Easter Bunny. "It doesn't work like that, buddy," I explained. "It's not like Santa Claus. You get what you get." He was visibly disappointed. But then this morning when he found his Easter basket, which contained a rather large talking and moving Buzz Lightyear, he squealed in delight, "But Mama! I didn't have to get what I got! I got just what I wanted!" An awesome moment where I felt that as I parent, I had truly nailed it.

Two of our friends came to spend Easter with Cora while we were in Novato. As usual, she cast her serene spell on them and dazzled them with her deep wise soul and her many chubs. When we walked in, Cora was kicking around and gave me a huge, "Mama!," smile. God, she warms my heart.

Jason and I both came back to be with Cora tonight in hopes that tomorrow will be move day. Yesterday's blood culture is holding solidly negative after 36 hours. Fingers crossed, if today's comes back negative as well, we could be on our way. I think we are both anxious to move to UC and get on with some more investigating into exactly what's going on with Cora, as well as just be closer to home.

I just looked over and Jason appears to literally be sleeping leaning over Cora's crib. This is such a tiring lifestyle. In the journey of parenting, they really don't discuss how to manage your life when one of your three children lives 60 miles away. We are a working exercise in trying our best to make things work in the midst of chaos. Most of the time it feels like an episode of Top Chef where they ask you to make a gourmet meal using only 4 ingredients, one of which is anchovy paste. It is truly a "make it work" era for us.

Because at the same time that we could get a pass if we wanted one -- on things like Easter egg decorating or normal holiday celebrations, I don't want one. Like it or not, this is our life. And I don't really see it changing in the near future, so I don't want to look back on this time like the "lost era." When I look around, I see that our kids are growing up. Things are happening: Cosette is learning more and more words and expressions everyday; Dom is learning letters and sounds and the building blocks of spelling and reading. As my mom always reminds us, "life goes on." So we just have to find a way to incorporate all this into our lives. To see this as just being a part of life, no matter how undesirable a part, just a part of the whole big glorious bundle.

That's why I've decided to take Dom and Cosie to Disneyland next week. Yup. I really have. Jason encouraged me to take a couple of days away and just do something purely fun with the kids. I resisted at first, but then I remembered that life is going on. I will miss my little chubbalub, but Jason can stay with Cora and it really will be okay. It seems like a pretty beautiful idea to give these little ones, who have already shouldered a giant emotional load, something really, really fun with their mama. And I need that from them too.

Happiest place on earth, here we come.

Family

Today was a very happy-sad day. Because our family lives in two universes -- the one in San Rafael, and the one in Palo Alto -- we usually have at least two different kinds of days. For me in San Rafael, it was a great day. For Jason and for Cora, a not-so-great day.

I woke up this morning and walked downtown with Dominic and Cosette. In our prior life, we started almost every weekend day with a walk downtown as a family, we got coffee and let the kids run around and play. Doing that routine with the kids this morning made me so happy, but it also made me sad, again not being able to rid myself of the pictures I had of how the five of us were supposed to do these things together. Still it was so wonderful to chase Dom and Cosie through the park and to hear their ringing laughs as I raced them down the sidewalks in their double stroller.

Meanwhile at the hospital Jason was informed that all of Cora's blood cultures, even the one that was previously negative, are now positive. This means that her infection is not yet responding to the antibiotics, and it's very worrisome. The doctors decided they needed to remove her broviac since this line is the source of the infection. It's always so hard to get IV access on Cora, especially stable access, and that's the line she went to the cath lab to get. But there's no doubt it needed to come out, even though I was hoping not. So they removed it, which was pretty painful for Cora, and I'm sure hard for Jason to watch. Afterward they were able to get an IV in her after just a few tries. We'll see how long it will last.

The news about the cultures further delays our move back to UC. Stanford will need to see 48 hours of negative results in order to clear us for transport, so hopefully we'll get lucky and tomorrow's results will get us headed on the right path. We had hoped for a transport on Monday, but now I'd say that's a long shot.

The rest of our day here in Marin was truly wonderful. I took Dominic to one of his best friend's birthday parties and watched him run around, carefree. This evening I went to dinner with some of my dear friends and laughed a lot. I needed that. Carolyn watched Dom and Cosie at her house, and I loved hearing her stories afterward of how sweet and fun the two of them were together. They picked carrots in the yard, fed the fish, went in the hot tub, and whispered stories to each other as they were falling asleep. When I picked them up I carried them, snoozing, through the rain and into the car to head for home. Looking in the rearview mirror I could see them back there with their heads rested on each other. They are so amazing, so beautiful, so perfect.

Earlier today Dom had explained to someone where he sat in our car. He pointed to his seat, "this is where I sit, and this is where Cosie sits," and pointing to the other empty seat, "and this is where Cora sits when she's home." And yesterday Cosie picked up a pretend phone and said, "good morning Cora, do you like your nurse today?" They are a constant reminder that there is something much deeper about family than circumstances. No matter how abnormal our life is, no matter how pathetically few days Cora has actually lived with our family, she is already a complete and permanent member who is deeply loved by all of us.

I just finished putting together the kids' Easter baskets. Three baskets, one for each of the kids, hidden around the house, where they belong.

Not too much news but some great photos

I'm keeping it brief tonight. I'm not feeling very inspired to write but it was worth an entry just for today's photos alone.

I came home late last night to hang out with Dom and Cosie but Jason, who has been there with Cora, said she was awake and playful most of the day. She even got to go for another wagon ride and checked out the view to the outside world.

The only real negative today was learning that yesterday's blood culture was positive for infection. I'm not surely exactly how this works because the culture from the day before was still negative. Either way we are just hoping to try to line up a few days in a row with negative results. We will just have to see what happens with each passing day.

Other than that, not much new to report. The kids and I had a fun day but I am definitely running low on patience and reserves tonight. Everyone in this household is overtired and grumpy right now -- myself included. Just too many nights of very little sleep I suppose, and a very long emotional toll road.

Cora's Lessons

As I sit here, I can honestly say I am very happy. Cora is kicking around listening to tunes and watching her mobile, Dominic and Cosette are at home playing with one of our dear friends and one of their favorite people, and Jason is on the way down to Stanford to switch places with me. I am enjoying a very nice, very grateful moment.

This morning we got our first negative result from a blood culture! We'd been waiting for that. This means that the antibiotics are working to treat her line infection. We will wait to see if tomorrow's culture is also negative, and if we can stack a few good days together it will be a very good sign that she is moving in the right direction and most likely has kicked this infection.

Again today Cora had no real interest in drinking from the bottle. The occupational therapist and I worked with her for about a half hour but just couldn't get her to drink anything. Tomorrow we may try turning off her feeds for a few hours to get her good and hungry beforehand -- it's possible she's just not motivated enough to really work hard at eating.

Physical therapy was another story. She really shined today. Grabbing at toys, following objects and people with her eyes. So patient and content with each exercise the therapist tried. Grandma and Grandpa were here for that and I could tell that Cora made them proud. She made me proud too.

Many of you have heard me say this before but Cora really is my easy baby. She is very good at entertaining herself, she hardly ever cries, and she is filled with love. No matter what hardships she has endured, it is so obvious that she loves life. Her wide eyes tell me she thinks it is a very entertaining show. Most mornings when I walk in she is just sitting there, calmly taking it all in.

Tonight I just feel so ridiculously lucky that I get to be her mom. She has forever changed me for the better, helped me to slow down and be on the lookout for joy, to excessively celebrate the good moments, and to find a way to be happy irrespective of any condition or line I may have previously drawn in the sand. I've also become a compulsive hand washer.

One of the things I find most amazing about love is that, the more there is of it, the more there is. It never has a bottom and there is always enough. The more I love Cora, the more I love everyone else around me. Six months ago I thought I was filled to the brim with love, but somehow I have even more today. I was a 32-ouncer of love, and somehow now I'm a Big Gulp.

Looking down the line

Cora tried for another sleep fest today, but this time I wasn't going to stand for it. I insisted she try her rocking bouncy seat and she didn't protest. The entire time she had a look like, "really mom? Are you satisfied?" But she complied, and it made me very happy.

In medical news, her blood culture of yesterday is still growing the infection despite a couple of days on antibiotics. The good news is that they now have a better understanding of the specific bacteria that's growing, so they were able to switch her to a better antibiotic. We should see some change in the next day or so.

Cora didn't have much interest in drinking from a bottle today. The occupational therapist worked with her for a good half hour but Cora just seemed mad about it today. I am starting to accept that she will have a feeding tube for a long while. The last time she had the opportunity to drink by mouth was over three months ago. I suppose it will just take time to really relearn everything.

The GI (gastrointestinal) team came for an evaluation. There had been some concerns that she was possibly having trouble metabolizing food, which could be contributing to her difficulty gaining weight. Luckily the team does not believe this to be the case. They continue to think her persistent work of breathing and some of the other heart failure symptoms are causing her to burn excess calories. The better she gets, the more we hope she'll be able to put on weight. In the meantime she'll still need the intravenous lipids to augment her food and chubby her up. I can live with that, I guess.

We also had a consult with the pulmonary (lung) team, to investigate Cora's continued need for oxygen support and her difficulty keeping fluid off her lungs. There are additional tests they'd like to run but these would require intubation and general anesthesia and she's too fragile for that right now.

There was more tweaking of her doses of heart medications, trying to find that right balance to give Cora as much support as possible.

Now that I list it all out, I suppose it was kind of an eventful day. But at the same time, as usual, we didn't learn very much.

A friend of mine was visiting today and she witnessed a conversation I was having with some of the cardiologists, one of whom said, "maybe in a couple days," in answer to one of my questions. When they left my friend turned to me and said, "what do they mean, 'maybe in a couple days'? Is it, or isn't it? What does that mean? Two days? Three days? Ugh!" It made me laugh because I had been perfectly content with the doctor's answer. We have built quite an immunity to the oddities of this system, because you really have to shift your perspective if you're going to survive in the medical world for long. You have to totally abandon the need for absolutes or blacks and whites. Everything is, "we'll just keep watching it," or, "that could happen." This has been a painful transition for a type A, control freak, like myself, who just wants to know how every story ends and on what timeline.

But I have to say, I'm glad about the change in me. I'm more okay with vagaries now. I'm okay with waiting and seeing. Jason and I have been in the very humbling position of having been told many times that our daughter might not survive. That's a conversation that fundamentally, and I believe, forever, changes the axis on which your world rotates. From then on, you live carefully on the delicate pinhead in the exact center of the pendulum. If we are even talking about things that may happen down the line, I'm okay with that. I am just happy that there is a line we can look down, that Cora is here with us, and that she has beaten so many odds already in her short life. We have far more possible outcomes from my seat tonight than we did just a few weeks ago.

As a dear and very wise friend always says, the solution is beyond my imagination. So one way to look at it is, the more days this continues, the more broad the solutions become.

Sleepytime

Cora spent the entire day sleeping. I'm not exaggerating. She woke up once at about 2:30 for her physical therapy, and when it was finished she fell back asleep. Then she woke up again at about 6:00, got a diaper change and promptly threw up, then back to sleep. I requested a bouncy seat for her to try, thinking maybe we could have a little fun activity time. I kept waiting for her to wake up and play with me, but she never did.

(I find it funny but also sad that I now consider sitting in a bouncy seat to be a fun adventure. Just think, a ride in a stroller would be a European vacation!)

Yesterday's blood cultures came back positive, which just means that eight or so hours after beginning antibiotics she still had her infection. Not too surprising. They will just keep culturing her everyday to see if she's responding well to the antibiotics.

There is a chance we will move to UCSF tomorrow, but probably not likely. In order to be cleared for moving, Cora needs to have been on antibiotics for 48 hours (which she will have been), and also needs to return to her baseline in terms of general health (whatever that is.) But we also need a room to open up at UC, and for all the other logistical stars to align. I'm not holding my breath.

I'm hoping today's sleep fest is just about getting some really good rest so she can beat this infection. Then maybe tomorrow she's going to snap back into action. But just in case her marathon sleep is an indication of something else, I'm going to stay here tonight. That will satisfy the little worry voice within me.

The Funny House

It turns out that yesterday's illness was a blood infection, likely caused by bacteria getting into Cora's central line. She had a rotten night, and a pretty rotten day, but tonight she seems to be more peaceful. Hopefully this means she is responding well to her antibiotic cocktail. Until the infection clears, she will get daily blood cultures to reveal exactly what type of infection she has, and this will guide how best to treat it. Until then it also means we will not be able to transfer to UCSF.

Cora had been so sick last night that they stopped her feeds, but they just restarted them now. Unfortunately they had to replace her NJ tube, which she did not appreciate. She also just got ten medications on an empty stomach, so we'll see if she can keep it all down.

Needless to say, today was a very frustrating day, on the very frustrating continuum we seem to be stuck on.

This morning I was "on the war path" (Jason's observation of me.) I was just so angry and agro over yet another thing happening to Cora -- one that seems like it could have been avoided -- when she already has so many things to face on her own. I'm mad that we are stuck in this limbo land in between two institutions, and that now we're stuck for even longer. I'm mad watching Cora struggle. But most of all, I'm mad that at three months into this hospital stay there really aren't any outward things about Cora that seem very much better than they did on the day we were admitted. And we don't have any things that are being actively investigated that might explain why she is struggling. And more importantly, we don't have any plans for what we're going to do to make her better. And now with this recent infection, Cora needs additional support, and I just don't feel that anyone is there to give it.

There. That is my rant.

I tried to rationally give my rant to a doctor today. Not just about this infection, but about how many things about Cora, and about all the conflicting things we've been told, don't make sense. He looked at me politely and curiously, as though I were a strange specimen from another planet that he'd be interested to study. I wanted to shout, "I am a very reasonable, intelligent person! I am not from the loony bin!" But what I instead said was, "I feel like Cora is trying to show us that she needs help but no one is paying attention. How can you explain everything that seems to be wrong with her?" In the end, he really didn't have any answers, and when he left the room I just felt a little deflated. With no answers and nothing to feel great about, Jason and I then did what any parents in our situation would have done: we went to get a coffee.

A lot of the time I feel like I am in a funny house, disoriented and confused, and I keep asking everyone I see how I can get the heck out of here, and they all smile politely and point in a direction. But when I go in that direction, I ram my face into something hard, only to realize I am in a room filled with mirrors.

I sometimes feel like the doctors have all the answers locked in a box somewhere, but they're just not sharing them with me. I guess the reality is that there really is no secret box, and instead just a pathetic shortage of answers. I wish I could find them. I wish I knew myself how to help Cora and could just bust out of here.

I guess it's time to take a deep breath. I have to say after writing this all that I actually feel much better. Yes, there is Frustration Nation. But then there is also the rather pudgy little person who is right now sleeping in the frog position on my lap.

It must be an incredibly sweet god who put her here, right in this moment, to snap me out of my cerebral adventure and quietly remind me that all is well, and exactly as it should be.

Just to add insult to injury, a fever

It has been a pretty crappy day for Cora. She's been struggling with a fever all day, and lots and lots of throwing up along with it. That means in addition to her normal labs she has had to have many extras today for blood cultures and all kinds of other tests. She is still working very hard with her breathing, still in heart block, and worse than that, you can just tell she feels awful, and therefore I feel awful, and things just seem a bit awful.

We are still at Stanford, but it sounds like a bed is supposed to open up at UCSF tomorrow. We will see.

Today Jay had to go to Marin for work all day so I had some good quality time juggling all the kids. Let's just say I picked my battles and there was an emphasis on snacks over nutrition, and an abundance of a certain Spider Man costume. We had to keep our visits to the hospital relatively brief because, as I've already explained in previous blog, this quiet environment tends to bring out the beast in my children. But my sister Jen and another friend jumped in to help and spent time with Cora while I entertained the others.

I would like to tell you about some of the moments today, good and bad, but as I write this I am at the hospital again with Cora and she is still having a very hard time. She doesn't so much care about my blog as she wants me to politely ask the nurses to stop trying to catheterize her, and help her go to sleep.

One final thing though: when I was walking with Dom and Cosie between the hospital and RMH for the fourth time this evening and everyone was feeling adequately torched, Dom said, "it's like Dori says mama, 'keep on swimming -- just keep swimming.'" Leave it to Dom to pull out a quote from a movie he probably hasn't seen in a year, just to remind me that he gets it, and that with his four-year-old wisdom he is helping us get through.

Getaway

We are still at Stanford and there was no word on our potential move, so we will keep waiting.

In the meantime it was a pretty great day for everyone. In the morning, Jason and I gave Cora a tub bath which she enjoyed very much. Then some special guests came to visit, one of whom, Cora's cousin Sophie, read her a story. Cora watched intently as Sophie entertained her.

Later Grammie and Papa came down to spend time with Cora while we went for a long-overdue fun day out with Dominic and Cosette. Some of our friends had come down for the day, and my sister Amy and her family joined as well. We headed out to a place called Happy Hollow Park in San Jose. It was just what we needed -- the name says it all. We rode rides and just generally had a great time.

I did think a few times that it is so unnatural to have a child who can't go where we go, to only ever have two of our three. I always feel her missing little presence. But I tried to just imagine a time in the future when she will be with us on all the wonderful adventures we have yet to take. I know that day will come. And for the record, I swear we are not missing this year's annual Disneyland trip, and Cora, with or without her tubes and cords, is coming with us.

So grateful for a stable day for Cora, for all our wonderful family and friends and community, and for being able to see all the joy and all the love and all the bright spots in the midst of everything.

A decision, and yet another day

We have decided to transfer back to UCSF since a transplant does not appear to be in Cora's very near future. There are still so many uncertainties, but being at UC allows us to be closer to home and we have a team of doctors who know Cora very well and will hopefully be able to take a fresh look at her now that things have changed. Of course we can always transfer back to Stanford if things turn again and a transplant is again the only and best option.

With no notice, I received a call this afternoon that a bed was ready at UC and that they had sent a transport team to pick up Cora. I scrambled to get the kids to Grammie and Papa's and found a friend kind enough to give me a ride down to Packard (thank you, Carolyn.) Jay was already there, but he would need to ride in the ambulance with Cora, and we still had to pack up the Ronald McDonald apartment and pick up Jay's car. Naturally, when I arrived at Stanford after all that rigamarole, we were informed that there had been an administrative glitch and she wouldn't be transferred today after all. I really could do without these types of glitches.

The bright spot of the transport mix-up was that I got to see Cora today, when I wasn't expecting to see her until tomorrow, and also to overlap here for a night with Jason. We will see if we're moved tomorrow; likely it will be Monday before the conversation will begin again.

Overall Cora was stable today. She has been flat on her weight gain for the past few days, so they increased again the volume of her continuous feeds. She still receives the intravenous lipids in an effort to bulk her up. There was some evidence today from a gastrointestinal test that she may have difficulty absorbing nutrients. This could possibly mean that her problems gaining weight may be in part due to something in addition to her cardiac difficulties -- namely an issue with the way she metabolizes food. So, we will be referred to a GI team for evaluation in the coming days. Just put it on the list.

Today marks twelve weeks since we re-entered the hospital on this stay. I'm tired.

Thank God none of us can know the future. If someone would have told me on that Friday, December 28th when I called our pediatrician feeling so worried about Cora, that we would have entered the hospital that day and would still be in a hospital on March 22nd, I would have cried. After all Cora had already been through in November and December, I just wouldn't have thought we could top it.

But we didn't know then. Just like how from my seat now I can't see how much longer this journey will go on.

Each day we just get up, face what's in front of us, fight the little fights we can, and try to let go of the bigger intangibles. Stay in the moment. Walk the tightrope. Down look down. Don't freak out.

Oh yeah, and try to get some sleep.

Medicine

I am at home tonight with Dominic and Cosette and Jason is with Cora, who is currently fast asleep. It was just a so-so day for Cora today. She has been very lethargic and is still struggling with her breathing. She gave us a decent scare earlier this the afternoon when she was difficult to rouse and it seemed like she wasn't profusing well. At the time her heart block was acting up in a semi-dramatic way, and the combination of everything was enough to warrant the doctors ordering a battery of tests.

I'd gone home to pick up the kids and luckily my sister, Amy, was hanging with Cora until Jason arrived. Everything seems to be okay-ish for the time being but it was another reminder to me that Cora isn't out of the woods yet. I think she is just going to have these backs and forths, and our job is just to watch her, advocate for her, and continue the business of trying to get to the bottom of all this as more is revealed.

I used to think that medicine was pretty straightforward. You don't feel well, you went to the doctor, they told you what's wrong and that's that. I believed they could always tell you what to expect, what the course would look like, and even if they may not always be able to heal you, they could at least speak in definitives.

I've found that to be so far from the case. There are very few absolute points. There isn't a blood test that says, "oh -- 18...that means you will never recover and need a transplant," or "22...that means you'll be fine in three months." Everything we've encountered, perhaps with the exception of the original coarctation and VSD repair, has been subject to differing opinions. The courses to take have been very unclear. Cora's heart failure, her heart block, and all of her myriad other issues, are very much gray areas on which few people, all very well trained and very brilliant doctors, agree. I'm not sure we will ever understand very much of it, but my hope is that with each day that passes, Cora will give more clues as to what she needs. And also that we will continue to find the intuition to lead her down the right courses.

I spoke with Cosette and Cora's very wonderful cardiologist from UCSF today and told him I was having trouble keeping up with and understanding all the various issues and the turns her illness has taken, and he laughed and said, "you're not alone!"

But that brings me to some of the very wonderful things about medicine that I didn't know before this. I didn't know there were nurses who I would feel like I'd known for years after spending one 12-hour shift with them. I didn't know those nurses would text me and email me and send me cards in the mail, but they have. I didn't know that some doctors would give me their cell phone numbers even after they were no longer treating Cora, but they have. I didn't know that those doctors would answer their phones on the nights and weekends, but they  have, or that they would never seem to tire of our endless questions and updates, but so far they haven't. I didn't know that they would spend parts of their day discussing my daughter, not because they were treating her, but because they cared about her. They really have.

For all the many medical professionals we've met who have been incredibly brilliant and very renowned, the ones who I'll always remember are the ones who have really cared, not just for Cora, but about Cora. There have been many. I don't know anything about medical school, but I hope there is an entire year devoted to teaching people to really listen; that spending twenty minutes sitting down with a family can be much more important than just about anything else.

Tomorrow there will be more tests, and very likely, few answers. Such is the difficult and frustrating road we're on. But still, I feel optimistic. Like so many of you, I deeply believe in Cora and I know she will make her way.

A nice, much appreciated, boring day

There isn't a lot to report tonight. It was a rather boring day, although of course in hospital land we've come to sincerely appreciate dull.

Cora had her morning session with the occupational therapist and continues her work on drinking from a bottle. Today she was only interested enough to take about 5ml, but that was better than yesterday when she wasn't interested at all. I guess it is to be expected -- two steps forward and one back. We are told it will likely be several months until Cora can get back to eating entirely by mouth. She still receives her intravenous lipids through her broviac, and it's unclear whether she would be discharged with that, or if it will come out.

Later in the day she had a physical therapy session and worked on her exercises (see photos to fully appreciate the cuteness.) She really has made so much progress already. This morning when I walked in the room she was laying there playing with her hands, which is one of the things the therapist has been working with her on. It's like she was studying outside of class! What a little overachiever. She has been moving and kicking so much more than just a few weeks ago. She seems pretty excited about it all, and of course we are too.

Other than that she mostly just slept today. She seems pretty exhausted by the move and I'm sure her little heart has been working overtime to get her better. Sleep is good. It's really the best way for her to keep gaining weight, which is still what she needs most to do.

Her heart block and rhythm issues continue, and there is a very high likelihood that she has a pacemaker in her near future. That's something that will be investigated in detail in the coming weeks, potentially after she is discharged. She's also still requiring oxygen and there doesn't seem to be a good explanation for that. Still plenty of things to look into, but none of them as catastrophic as what we were facing a few weeks ago.

For that, and for many other millions of things, we remain very grateful.

Bob's Your Uncle

In my brief time living in England in my early twenties I learned an expression that I love: "Bob's your uncle." For those that may not know, it basically means the same thing as, "you're good to go." Because life in a hospital can get very dull, and because humor is the only way to get by in a situation like this, Jason and I have developed many inside jokes that help us keep things light. Most recently I have been turning to this old favorite of an expression to help explain how less than two weeks ago Cora was listed 1A for transplant, and somehow today she was transferred out of the ICU. What can I say? You show some good progress on an echo, and Bob's your uncle.

As of today Cora is living in what's called the Intermediary ICU (or IICU) here at Packard. It's somewhere in between an ICU and the cardiac step-down unit. It does come with a rather large private room complete with its own bathroom, which is by far the best perk of the transition.

As much as you would assume my overwhelming emotion about the change would be happiness, it feels more complicated than that. Yes, I am happy that Cora seems to be doing better by many measures. But at the same time, some measures are really not better, and I worry they will worsen with fewer eyes on her. Naturally I look at and analyze everything she does, and I still see so many concerning things. There are a lot of legitimately concerning things, things that everyone agrees are concerning. But I'm sure a lot of it is just fear.

As usual, even though my instinct is to protect Cora, to take care of her in every way I humanly can, and to own all the responsibility of keeping her safe, I just don't have that choice. I instead have to show this titanic faith that she is being taken care of by an army of people I barely know, and that everything that needs to unfold will unfold in its due time. It's my job to keep my daughter safe, but I can't do my job myself and I need all these other people to help me. It irks me. Just trust that it will all work out, and Bob's your uncle! Much easier to write than to do, I'm afraid.

But I am trying.

Experience tells me that Cora will present what she needs. She always has. It also tells me that I will intuitively know how best to care and advocate for Cora, regardless. My gut right now tells me that our show will still have a few more dramatic acts, but maybe it won't. Maybe it will be all up from here. Or maybe it won't.

What I really want is to know for sure how it will go. Will we be here another ten days or another ten months? I always want to know, but I never can. As my very wise friend says, there are certain things we can never know, because they are unknowable. I believe this qualifies.

Love

Of all the wonderful feelings out there, I am convinced that holding a sleeping child is among the very best. Right now Cora is snuggled up next to me in a deep dreamy sleep. When I look at her snoozing little body everything else kind of turns into a hazy fog, and we could be anywhere.

Unfortunately we do happen to be an ICU, as we have been for what feels like a very long time. Hopefully it won't be much longer though. They are actively talking about kicking us out of here very soon.

The last couple of days Cora has continued to hold her course on the upward trajectory, and although she still struggles with her breathing and heart rhythm, anyone can see she looks phenomenally better than she has in a very long time. There weren't any real changes to note today in terms of medicines or support. Just status quo through the weekend.

She had several visitors today and she gifted them all with smiles and happy wiggles. For everyone, and for us, it's like seeing a different girl. She is all the played-out baby words -- soft, pink, snuggly, precious, edible -- and yet still all her own words like, strong, wise, deep and surviving. She seems so genuinely delighted with herself and her newfound energy. All she wants to do is catch your eye and smile at you, and she no longer has any interest in sleeping. This, of course, qualifies her to be a child of mine.

Speaking of, Dom and Cosie are still down here and they had a blast today, as usual. Dom insisted on an entirely green outfit for St. Patrick's Day and he tried to sucker me into buying him green shoes to wear, but even I have my limits.

We played for a long time in the playroom at Old McDonald's this afternoon. At one point there was a little boy we could hear crying in the corner of the room. I asked Dom if he wanted to see if we could make the boy feel better and he shook his head, yes. We went over to the boy and I asked if he wanted to play with us. Dom said, "yeah, because we're really good at loving people and being their friends." Cosie stood by nodding in agreement, solemnly. It was a pretty good parenting moment. For all the blunders we've made, these two are wonderful and kind hearted, and they make me very proud.

Cora is the same, I know. She can make people a thousand miles away love her, and love their own lives and families in a new way. She brings people to love. It is her special gift.

Lines, chubs, and the best Papa ever

When I walked in this morning Cora was smiling and kicking, and all-in-all very happy. I figured such a lovely day deserved a pink frilly outfit. Of course all of her doctors commented on her posh attire and she seemed very happy about it as well.

I keep bracing myself for another turnaround in the wrong direction, but yesterday's echocardiogram confirmed the positive trajectory she seems to be on. At least for the time being our course has completely changed.

On morning rounds today they talked about sending Cora to the step-down unit -- meaning out of ICU -- within the next few days, provided she keeps on this path. It feels very surreal, but of course I'll take it. In all the nights and days I've sat in a hospital room and contemplated the future, I never dreamed there would be a scenario wherein we would leave Stanford with a healthier little girl who never received a transplant. Now I am allowing a little of that hope to settle in.

Cora got off her last IV infusion, and her femoral line was removed today. This just leaves the newer subclavian broviac she got last week. Always a good sign when lines are coming out.

At this point she is still receiving intravenous lipids (pure fat) in addition to her milk that she gets continuously through her NJ tube. The concoction seems to be working because as of this morning she weighed the most ever -- 3.61kg, or 7 pounds, 15 ounces. She is getting to be such a fatty! I treasure every little roll of chub on her. She works so hard for each one and it seems like there are more turning up every day.

Grammie and Papa (Jason's parents) came for a visit today to the hospital and later to the Old McDonald House. Cora lit up when Papa was playing with her. It warmed my heart beyond words to see her connect with him in the same way that Dominic and Cosette both have since they were tiny babies. For those that don't know, Papa has watched Dom and Cosie since they were each four months old when I went back to work. He now has Grammie's help even though he probably doesn't need it since he can take care of two kids like it's nothing. No one quite compares to Papa, as everyone who knows him can confirm, and I could see that Cora really became part of their magic little club today.

Dom and Cosie are here sleeping now, and Jason is back at the hospital with Cora. At least we're in the same town, if not under the same roof. There is a lot, a lot, a lot to be grateful for.

Perspective, and who knew about Scorpios?

I am not one to place any stake in astrology, and before about two hours ago I could not have told you Cora's sign, but it turns out she is a Scorpio. I know that because a friend sent me a webpage about Scorpios. It describes Cora so perfectly that I have to share a line from it:

"Scorpio's Life Pursuit: To survive against all opposition. Reputed to be the most powerful sign of the zodiac; Scorpios lead fate filled lives and...many astrologers call this the sign of the oldest souls."

So there you have it. Now I am obviously a believer in astrology.

It was another successful day for Cora. Probably not quite as amazing as the day before, but still a solid day in the right direction. The biggest event from today was that Cora got to try taking a little bit of milk from a bottle. She has been fed through her tube since December 28th. Naturally, because she is a very clever little girl, Cora didn't miss a beat. Granted, she was only allowed to try drinking about 1/3 of an ounce, but she remembered the complicated coordination of things -- suck, swallow, breathe, and repeat. Very impressive.

She did then promptly give everything she had just drank right back to the Occupational Therapist about three minutes later, but that's not her fault. It really was amazing that she hadn't forgotten how to eat after so long taking nothing by mouth.

Other than that, she is almost fully transitioned over to her oral heart medications at this point and just has one IV medication left. I believe she now takes 13 medications in total. I can't help but laugh at how my perspective has changed. I remember when Cosette had a VSD and had to take one heart medication and one vitamin supplement, and I thought the world would end. Things that would have been unimaginable in my old life are now just barely footnotes.

I was looking through some pictures tonight on my phone and of course there are many taken throughout Cora's journey. Some of the pictures literally shock me. I remember taking these pictures at the time and saying to Jason, "doesn't she look adorable in this one?" And he would give me this crazy look like, you are going to scare the crap out of people if you post that picture. At the time, I didn't think it was scary. I just thought it was what Cora looked like that day, and despite whatever shocking apparatus she had or no matter how pale or terrible she looked, I only saw her.

But as I have some small amount of distance between now and the really dark days (which, in and of itself is of course a matter of perspective) I can look at the pictures, taken on various bad days, and be stunned. How in the world did we walk through that? And even as I have that thought this evening, sitting more or less in a place of having escaped -- for the moment -- yet one more of Cora's walks on the tightrope, I know that one day I will look at a day like today, and ask again, How in the world did I get through that? Life is always scarier from any other vantage point than, right now.

The answer to the question of how we get through this is that we live our life trying to stay in the day. And in the day, it's just Cora. It's not the sad memory that we almost lost her five specific times (with the lingering possibility of losing her on any other day in between), and it's not the anxious fearfulness about whether her recent improvement is for good, or about how we will treat her complex cardiac issues, or about what her future, in light of her genetic disease as well as her heart disease, holds.

Removing all the boogeymen; removing all the fear. It's just Cora.

Cora's crazy non-linear course

Cora actually had an incredibly fine day today. As soon as I walked in this morning, I could tell she felt better than she had in a long time. It was like she had just snapped back into life.

I held her in a sitting position for a while so she could look around, and later she got to sit in a bouncy seat. Normal baby stuff! She definitely enjoyed the changes in perspective, although she did look a bit worried at some points.

It was a big day, medically, too. We had a conference with all the various doctors caring for Cora, and while they are still perplexed, they all believe that Cora's heart function is showing real signs of improvement. Though they don't really know how to explain these improvements, they're pretty excited about things for the time being. No one knows if she will continue to improve or if she will do what she's done before, which is improve for a time only to decline again.

Only time will tell that.

But I did have a glimpse this evening when I could see that maybe our road is turning. Things that were completely off the table -- like going home on medications, like not imminently needing a transplant -- at least for now, appear to be back on the table. The old Hail Mary, presented as our only hope of Cora's recovery, may in fact be in play.

We still have her heart block and rhythm issues to deal with, even if her function becomes very good. She has many hurdles she'll have to jump in order to get to the place where we could consider going home. So as usual, it will be a longish road. But last week's road only had two possible outcomes, and now we have at least three.

But we'll see. What we always hear is, "Cora is complicated." I almost think she enjoys doing weird things and watching everyone try to figure her out. She could care less. She's just sucking on Binky Dog and watching the people come and go. And as usual she seems much, much wiser than the rest of us.

I still can't get over the change she's shown in the last few days. Everything is so extreme in this world we're living in. One morning they're talking to us about how they'll keep Cora alive until a transplant. The next day they're telling us she might not need one. So dramatic; so extreme. I barely have the emotions to keep up with it all.

I don't think I'll ever understand why we are on this path or why Cora has had to go through so much in her short life. But I do treasure every day we get to have her here, and certainly every day she feels better. However abnormal her course, we are on it.

Those deep Cora eyes were shining today. And her little spirit was very magnificent, and all who saw her noticed.

I noticed it was spring

Another tough day for Cora. It has been a week or so since we've seen her looking "good." Today she was pretty listless all day. They've weaned her down more on the IV meds as part of the challenge to see how well she can do transitioning over to oral medications. As I've written before, there is evidence that (some aspects of) her heart function has improved, and this is the real way to find out.

It's not easy to watch because I don't want her to have to go through anything more than she's already been through. But I suppose we have to give her an opportunity and see how well she can do.

Tonight Jason read Cora, The Very Hungry Caterpillar, and she perked up and watched the pages intently. If she's anything like Dom and Cosie she will develop an obsession with books. I am praying for the day that I will want to blow my brains out because Cora has asked for the same Spot book to be read to her thirty-seven consecutive times.

In other news, apparently the world is still turning outside the CVICU because I left the house this morning and it was spring. I think I missed winter.

Springtime always makes me think of when Dominic was a baby and how everyday I would put him in his fuzzy red sling and walk him around the neighborhood. At the point that I had him I had probably walked from our house to downtown about fifty times. But that spring I started to notice everything in a different way. I knew there were a ton of green trees in people's yards, but one day it seemed like right in front of me all the trees exploded with magnolias. I could tell you where every magnolia tree resided, how many were on each block, and of what type they were. Life is just like that.

I go along and along doing my thing. Paying the bills, being lighthearted, juggling logistics, and doing my best to balance everything until the next weekend or out-of-town adventure. Then something happens -- a real thing. A birth or a death, a true and honest moment shared with a friend, a long laugh with my family, a look at my kids doing something precious and perfect, our little lovely girl teetering on the edge of so much. Those moments, those experiences happen. And all the magnolias just come out.

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.

Together again, and a new development

Hallelujah! Jay, Dom, Cosie and I are all under the same roof tonight. A permanent room finally opened up at the Ronald McDonald House, so we transferred from our temporary one into a one-bedroom apartment unit. It will be "cozy" with all of us sleeping in the same room, but so worth it to be together. Safety in numbers, I say.

The kids loved exploring our new digs, which they call the Old McDonald House, and they were thrilled to find out we'd be staying here for a while. (Dom said tonight, "I hope we don't accidentally go to San Rafael because then we wouldn't be at our new, real home at Old McDonald!") It is really a wonderful place. There are train tables and giant stuffed animals in the lobby and the family rooms, a big playroom, a computer room, and a really big backyard with play structures and playhouses. It was a beautiful day and the four of us ran around outside for a long time, kicking the soccer ball and playing.

It's such a relief to be so close to the hospital and still be together. We split most of today -- one of us with Cora and the other with Dom and Cosie, but we also had a few chunks of time together in between. This evening Jason was able to come back to the RMH for dinner and bedtime, and now he's back over with Cora and I am on track for an early bedtime.

Cora Bear had a pretty rough day today. It's hard to say whether she is just being slow to recover from yesterday's trip to the Cath Lab, or if it's more trouble with her heart.

If I could sum up the last few days in a word, it would be: odd.

Cora has been very sick in the past week, and as I've already shared, this was a week when we had to go up on meds and support measures. However, her most recent echocardiogram appears to show some genuine improvement in her heart function. That would normally be miraculous news, but her crappy week doesn't correlate with her improved function.

Test or no test, the only thing I really care about is how Cora looks -- and this week, she didn't look good.

But still, she had a decent echo. And doctors care about things like that.

These situations frustrate me to no end. I desperately want Cora to recover, but I want her to actually look and feel and be better. Not just test well. So, we'll see, I guess.

This wouldn't be the first time we've witnessed Cora improving. In early February we watched amazed as she was weaned off a ventilator and all her IV meds, and then safely transitioned over to oral meds. We saw her do incredibly well in those last two weeks we were at UCSF. We even talked about going home, and we discussed transplant as something that might be needed down the line. But then she declined very dramatically, went back on IV inotropes, and has struggled ever since.

In any case, if Cora's heart function continues to trend upwards they will likely challenge her to get off the IV meds again and transition her over to oral meds, and wait and see how she does. She may be able to get back to that same position we were in at UCSF, but only time will tell if she can stay there. As Jason and I, who have seen her every day of her life, know from experience, Cora tightropes on the edge of a cliff, and it's going to take a very prolonged period of real recovery for us to believe things are improving permanently.

Of course there is this dream I have, I know we all have, that she will really turn around and feel wonderful, when we can pack our bags, say "that was interesting, and thank you very much" to the doctors, and go on our way. But I just can't really go there right now.

One thing is for certain. The doctors are definitely scratching their heads about her. What can I say? Cora likes to keep it interesting. She is unique and special and wonderful, and above all, her own girl. She'll do it her way, and I think no matter how this ends she is going to teach us all a thing or two.

Just one day in the CVICU

Cora's day was no fun. She felt kind of pukey in the morning, and then had to take a trip to the Cath Lab (which is a space-age surgical room where they use ultrasound and other fancy technologies to do procedures.) She's been there twice before, but this time she went to get a new central line so she can start receiving IV lipids (fats) in addition to her enteral feeding. All part of the plan to help her grow.

She came back with a subclavian line and also on a ventilator, which she was furious about. Fortunately that was short lived and they were able to extubate her later this afternoon. She also came back with her NJ tube mysteriously gone, so she had to endure placement of yet another tube. Needless to say, she has been pretty wiped out this evening.

Some of the hardest things to watch are all the little and not-so-little hurts that make up life in an ICU. So many procedures, that would under normal circumstances be considered a very big deal, constitute just another day for Cora.

I'm incapable of any clear thoughts or reflections tonight. Exhaustion has arrived and is setting up shop.

Thank you again to everyone who loves and thinks of Cora. Know that your prayers protect her, and us, through all the roads and twists and turns, no matter what, without a doubt.

Such a fine baby girl

One of the things I haven't told many people is that we learned early on in this journey that Cora has an extremely rare genetic disease. It doesn't have a name; it's just an abnormality doctors identified when they took a close look at her DNA.

It's so rare, in fact, that no one else exists in all the medical literature with this exact condition. When we were informed, doctors were able to tell us virtually nothing about what it would mean for Cora. They could point to somewhat similar conditions, but the possible outcomes they referenced ranged from no impact, to ever-so-slight developmental delays, to very serious and potentially life-threatening problems. (That's a helpful array.)

Upon hearing this news, I was personally devastated. It was at a time when I believed the only issue we faced was a coarctation and VSD repair. My heart was already broken over that. Now doctors were telling me that Cora could possibly face other things.

But as she recovered from that surgery, she began to show us that she was not a worst case scenario; she was just a baby. And she started to do normal baby things, like drink from a bottle, smile, gain weight, and kick around. A wonderful and compassionate doctor at UCSF told us, "you can't go down all the theoretical scenarios of what might happen. All you can do is let Cora show you who she's going to be." True and beautiful words that I've carried as a motto.

At the time we were originally discharged in December, Cora was just a little baby, recovering from major surgery. I didn't want to and haven't wanted to tell anyone else about this other disease, probably because I've been afraid people would look at her differently. When I looked at Cora, she showed me she was a beautiful, wise, petite but very spiritually strong little girl. I have feared that others would see someone imperfect. Everyone loves a little child who is encountering challenges, but who will recover from them, and then one day run marathons or play on a soccer team. My fear is, what if her story is not as perfect?

Which brings us to today. We've had a frustrating few days at Stanford. There have been questions introduced about whether there might be other factors contributing to Cora being so sick, aside from just cardiac issues. A thought that sinks my heart. And here we are again, another time when I stand in one place that feels somewhat secure, only to see a road ahead that's confusing, and likely very, very long.

I deeply wish things were different.

But as usual, no one is asking me. So all I can do is take each moment as it comes. I have painfully little control over anything, except my ability to love Cora, and continue to let her show me who she is becoming.

Beautiful little lionheart, you are an amazingly fine baby girl. I just don't think you drew the easy straw in this lifetime.

Another birthday, and life in a foreign language

Today is my birthday, and it was actually a pretty good day, all things considered. Jay decided to push his return back to Marin to get the kids for another night, so we were able to spend the day here together. I went for a run, had some visitors, enjoyed a nice dinner, and got a lot of much-appreciated messages from our wonderful friends and family.

I can't help but remember what was going on one year ago. (Actually, I have a terrible memory right now and can't remember anything specific about last year's birthday, but in general, you get the drift.) The two things I know for certain about one year ago are that, 1) I was still cruising around oblivious to the fact that I was even pregnant, and 2) that I never would have imagined in a million years that I'd be where I am today.

Jason and I are now set up in the Ronald McDonald House, about a half mile from the hospital. Hopefully within the next few days we will be transitioned to a more permanent room where the kids can stay as well, but for now we are in a temporary no-kids-allowed wing of the house. I remember seeing a commercial for the McDonald charities many years ago, and I can honestly say I never thought I would be a guest. I'm learning that life is just like that.

Cora did reasonably well today. She went back onto the hi-flow nasal cannula -- for those that don't know, it provides additional respiratory support. She also seemed much more comfortable with the higher dose of one of her IV meds that they increased yesterday. There were several unsuccessful tries for a new line, but no success.

A very kind and very patient doctor spent a long time tonight explaining more about cardiac function to us. As we go through this process, we try to follow along as absolutely best we can, with all the numbers, different lab values, all the objective and subjective data points on echocardiograms, oxygen saturations, blood pressures, and so, so many other things. But cardiac care is incredibly complex, and one of the things I find infinitely frustrating is that I just don't know everything about it. We're in a position where we have to rely on people we don't know or barely know, to act in the best interest of our child. We get a lot of information, but we hardly ever get all the information, because there's just so much information at play.

It's like going to Mexico with my whopping four years of high school Spanish education. I can get by. I can find my way to a restroom and pay for something at a shop. But no matter how hard I try, I can't understand the nuances. I can hear what people are saying, but I can understand what they mean only in a very elementary way.

And then I'm supposed to trust that all these people speaking very rapidly in a language of which I can only pick out a few words, are going to mostly determine my child's fate. It feels pretty awful. Yet at the same time, there really isn't a choice. And that's how it works.

Lots of trust, in a sea of powerlessness.

But still there are all the good things and happy moments we still have, and I know we always will have. Spa time with Cora tonight when Jason and I gave her a soapy bath. The happy birthday song, sung to me by my beautiful Dom and Cosie, their little voices, so beautiful and perfect.

The bad guy

Today started off so promising for Cora. When I arrived this morning she was smiling and interactive. I brought her bunny slippers from home and she had fun kicking around and looking at them.

Then things just kind of slowly went downhill. Her work of breathing increased, and she was clearly not feeling well all day. They ended up discontinuing the medication they had started yesterday, and then they increased her dose on another one, hoping it can ease some of the work her heart has to do. There was lots of talk about giving her additional respiratory support -- such as putting her on cpap -- but for tonight they are just watching her.

It wasn't all bad. There were some highlights, like getting to read her books this morning, and the bunny slippers of course, and giving her a washcloth bath this evening. But there were a lot of worries today and things overall felt heavy.

The question of the day was, again, how can Cora, who is so marginal and only eight days on the transplant list, possibly sustain this for months and months?

I'm thinking tonight about Dominic. He has a rather unusual obsession with dressing up as a villain these days. His regulars are Captain Hook, and most recently, Darth Vader. And sometimes when he's displaying some poor four-year-old behavior and we ask him to stop, he says, "I don't wanna be the good guy! I wanna be the bad guy!" Well, the other night he said, "Mama, do you know why I always want to be the bad guy? It's because if you're the bad guy, bad things can happen and you won't ever get scared."

I think that sounds pretty reasonable.

Sometimes I'd like to be the bad guy and avoid getting scared or hurt by anything. I'd like to have far more power than I do, and if not, then I'd at least like to flip to the last page of this novel and see how it ends. I feel like if I could just do that, then I would know how much to give of myself, or to not give of myself, and maybe I wouldn't be as scared.

But that's ridiculous because, in reality, there's nothing I would or could change. I only have one mom-speed and it's: All In.

So I am here now, just trying to accept things are they are and as they come. But sometimes I can just picture myself leaning over sleeping Cora, putting her bunny slippers back on, and gingerly removing each tube, line and cord. Then we could tiptoe out quietly and go somewhere fabulous. Like Disneyland.

Just another day here

Don't feel like I have a lot to say tonight, so I will keep it brief. Jason and I are both at the hospital for a couple of days. It isn't a romantic getaway or anything, but it's pretty wonderful to spend some time together.

They started Cora on her new IV infused medication this afternoon, which they hope will raise her heart rate. It's unclear whether or not she is tolerating it well -- her work of breathing has definitely increased. They've stopped and started it a couple of times and now have changed the dose. She's been steady now for a few hours, although it's not really raising her heart rate as of now, so I guess we'll see. Her doctors think if they could override her heart block and get her to a higher rate it could help her gain weight, which really is their primary focus right now. If she could only get bigger she would have so many more options, and where she sits now she hasn't gained anything in the last ten days or so.

Other than that, life is just going on.

As it has been on almost every other day since this journey began, I had some periods today where my gut was wrenched, and I had some good hard belly laughs (today it was thanks to my sister Jen, who spent tonight, her birthday, on a date with baby Cora.) I felt that motherly guilt for leaving two children to be with the third, and I also had the underlying knowledge that they truly will be and already are all right. I feared we will lose Cora, and I also believed she will one day be a healthy little girl, delighting all of us.

I felt grateful for all the family and friends, old and new, who just never seem to run out of love. I felt especially blessed to have two sisters who have just absolutely shined throughout this ordeal.

Jay is holding Cora as she sleeps now. All I can see of her is the top of her head, covered in soft little baby hair. Cords and tubes and beeps, currently pushed to the background by more important things, like hugs.

Cora Shabora, love surrounds you.

Escape from Alcatraz

This mostly felt like a long, tiring day. I didn't sleep much last night due to various kid shenanigans, combined with a brain that just kept chewing on the same old things.

Whenever I go more than a day or so without seeing Cora, such as when it's Jason's turn to be with her and mine to be with Dominic and Cosette, I get uncomfortable. In fact, as soon as I leave her, an internal clock starts ticking. It's a feeling similar to having restless leg syndrome (otherwise referred to by my friends and me as, "crazy legs.") When you just feel like you have to do something or you'll jump right out of your skin. Like this, not seeing Cora for any length of time makes me progressively agitated and as though I've been water boarded. I hadn't seen Cora since Thursday, and my crazy legs were at a crescendo this morning.

I hauled the kids down to Stanford for a visit, but the stars just weren't aligning for a magical visit. As soon as we arrived, Cosette (who our Auntie Marie lovingly calls a "spicy meatball") was in full effect. She was giving me her "I have no bones" routine. You know, the one where you try to pick up your tantruming child only to have her slither away like a heavy snake. Dominic, usually so tuned into Cora, wasn't too interested today. He did at least manage one quick game of peek-a-boo.

So I went in to see Cora, hoping to get my feel-good grounding, but it didn't really work. She wasn't feeling well -- increased work of breathing, pale, vomiting, and having trouble keeping her oxygen saturation high. I couldn't get her to look me in the eye. She had that agitated, antsy, far away look. Maybe she had the crazy legs too, I guess.

Tomorrow they will start her on an additional infusion of a new drug, which they hope will help increase her heart rate. With the slow beat and the terrible squeeze of her heart, she just needs more profusion.

The question I chew on in the middle of the night is, how will she hang in there for as long as she needs to? How will she balance on the edge of the cliff without falling off? Sometimes it feels impossible.

Meanwhile, this morning one of our dear friends raced the Escape from Alcatraz triathlon. She told me yesterday she was bringing Cora with her, and that she had made a bracelet that would remind her to stay strong. So Cora got to feel the chilly San Francisco Bay today through our friend Liz, and the thrill of a bike ride, and the burn of a really brutal run. Liz told me afterward that thinking of Cora gave her the oomph to make it.

Also meanwhile, I received so many loving notes and comments today -- more evidence that there is a circus-sized safety net a few feet below us at all times.

I literally wrestled my kids down to sleep tonight. I was so tired, it was so late, I was so done. But finally they silenced, and all is of course forgiven once the kids surrender to sleep. As I left the room, Dominic breathed that huge sleep sigh, the baby breath, indicating he'd passed over into dream land. It washed me with love, as it has every time I've heard that sigh since the day he was born.

Then I turned on the computer to write this, and I saw a note from another person who I don't know, and probably will never meet, but who prays for and thinks of Cora. This one was from a mother who tragically lost her four-month-old son, and who was brave enough to give his heart to someone else. His sweet heart is out there now, living on in another child who was waiting in need, just like my precious girl is tonight.

I just keep thinking of all the heartbreaks and all the miracles, living together in our big, messy lifetimes. And of how there are people all over the world who are selfless and brave, and over and over, doing the impossible.

Crowd Surfing

Cora is overall doing okay today, but she is definitely struggling. This one of the hard things to communicate -- the complicated and tough daily reality for her, living with advanced heart failure combined with the complexity of her heart block. It's like she walks on a tightrope across the Grand Canyon all the time. She is so fragile, her heart is so bad, and yet she likely has to sustain this for months and months until a donor will become available.

The doctors talked a lot today again about their continued concern for her. The team is constantly weighing the alternatives of giving her a pacemaker to at least help with her heart block, or of putting her on a Berlin Heart, or providing her with additional support in other ways. They worry that her heart won't be able to sustain her for a prolonged wait. But at the same time she's not robust enough to undergo some of the interventions that might help her.

Each day I just pray she can balance for one more day. I find myself holding my breath a lot.

Cora isn't phased by all these concerns, however. She just keeping living each day, amazing people, and me. Living, and snoozing, like she doesn't have a care in the world. (See photo for evidence.)

Jason came home for a few hours this afternoon and we got the opportunity to spend quality time with some of our close family and friends. We played with the kids, laughed a lot, and for a couple of hours we managed to set aside the stress that normally sits about three inches beneath everything we do.

I had a moment tonight when I was acutely aware that our family is living in a state of grace. The support, friendship, prayers and love from people we have known for years, along with people we have never met, and will likely never meet -- it's all buoying us over the badness that we otherwise wouldn't be able to handle. Kind of like crowd surfing.

Tonight we received an incredibly, wildly, bordering on offensively generous gift from a very large group of my coworkers. It truly blew us away. What a thing, to be so carried. 

I remember when I was little my Dad once said to me, "There are two kinds of people in the world: those that believe people are inherently good, and those that believe they are inherently bad." I have always been in the former category, but my current situation just affirms it. Almost everyone, if given the chance, is generous, open-hearted, and compassionate.

If you're reading this, you're likely one of the concert goers, holding us up while this show goes on. Thank you for carrying us another day.

An observation at the market

Cora Bear had another good day today. On the medical front, although most everything was status quo, Jason said she seemed overall alert and happy all day.

One change was that they changed Cora's NG feeding tube (through the nose, into the stomach), to an NJ (through the nose, into the intestine). Cora "eats" through that tube, and she's on a constant infusion of milk, because it requires her to expend the least amount of energy to digest her food. Even still, because of her heart failure, Cora has a hard time keeping it down. The NJ tube will hopefully help her, which will be great because what we want more than (almost) anything is for her to grow. If Cora can get bigger, things will be overall better, especially if she needs a VAD, a pacemaker, or another surgical intervention before transplant. "Operation: Get Some Chubbies" is the primary focus of her medical team.

She went for another wagon ride with Dad today, and parked in front of the window for a long time. When she got back to her room she was happy to just sit in her wagon next to the crib for a while, enjoying the new position and different vantage point.

She had several visitors today and seemed to work her magic on them all, continuing her work of making people who love her feel grounded and good. I'm telling you, when you look in Cora's eyes it feels like someone very old is looking back at you, and she just kind of fixes you. 

Meanwhile back in San Rafael, while the kids and I were at the market I had the opportunity to see a few moms wrangling their kids in the checkout line. They were all clearly somewhat annoyed -- kids grabbing at things, whining for things -- moms in a hurry to move on with whatever the next scheduled part of the day was.

I have been that mom about three thousand and six times. But today, I wasn't.

In my normal life I am someone who is very much trying to do it all. Until about four months ago, I woke up every morning at 4am, worked at a wonderful but demanding job, came home and tried to mother the crap out of my kids, then rustled dinner together, Jason and I bathed and otherwise manhandled the kids, put them to bed, and then I returned calls, worked some more, hung out with Jason, and tried to have meaningful relationships with my friends in between.

I don't have much going on these days. In the heartbreak of having a sick child, I got beamed to a magic place where the only thing that matters is the real stuff. I don't have to name it all, because of course you know it already. It has to do with love, and mostly with accepting that life is painfully short -- whether or not you're in a situation like ours. And that the only way to combat all that fear is just to be where you are, as much as you can. 

I know it won't last forever. One day, some way, this situation will have passed and it will be something I talk about, that I went through, a long time ago. The logistics of life will start up in all their fury. But I hope this part of me stays a little bit in tact.

When I live wherever I am in each moment, I can see that what we're going through is just life: ginormous, graceful and beautifully connected. Filled with red wagons.