We're Together Again

Cora is home!

The same doctor that yesterday told us it would be a while until she could leave, came today to say he was okay with her going home. After having spent some time in this system, we know it can be that way sometimes and we are just very grateful.

We picked up another medication on this stay so our little home pharmacy is even better stocked than before. With that along with several dosage changes it feels like a lot to keep straight, but we'll get the routine down soon.

Cora is excited to be home. Jay and I hadn't seen her smile in the past few days, but back at home she gave us some grins right away. She knows where she wants to be. Dom and Cosie smothered her with love despite our best efforts to encourage some personal space. Oh well, it was worth it to see them all so happy together. And to be back to our life of all being in the same place at the same time.

It feels pretty heavenly. I think I can just leave it at that.

Special People

Cora wasn't released from the hospital today, and from what it sounds like, it's going to be at least a few more days. She is essentially the same as she was on Monday when we were admitted, and the doctors are thinking that at some point in the next couple of days she will declare which way she's going -- either getting better, or getting worse. They still believe she is showing symptoms of heart failure, so it's just a matter of seeing which direction she's going.

For now we are a bit stuck here.

When I picked Dominic up from school and told him that Jason was with Cora at the hospital and that she wasn't coming home today, he got a sad look on his face. He said, "I had a plan for this afternoon, and it was that we were all together." Ouch.

On another note, one of our dearest friends is moving away tomorrow and we had the privilege of spending a lot of today with her. This morning she came to the hospital to see Cora, and I got to watch them interact with the very special bond that they share. Like everyone in my family, Cora loves this lady so much. She just stared at her, right in the eyes, with so much love. It was clear that in Cora's way, she was telling her just how much she loves her, and also that it's okay to go.

Then I brought Dominic and Cosie out to dinner tonight so they'd get to see her one last time before she went. Their goodbye was a silly one, and they entertained the dinner table with their toddler humor and their bottomless energy. They made everyone smile, especially our dear friend.

As we walked back to the car, Cosie said, "I love those people so much."

Tonight made me so grateful, not only for our amazing friend who has been such a fixture for me and for my kids, but also for all the wonderful quality people we have in our lives.  Really, we have a troop of grade A, all star, gold standard types who enrich our lives everyday. It's a gift to go through something like this and get to see just how much love surrounds us.

One of my favorite things about parenthood is sharing my kids with other people. I find very few things as gratifying as having someone tell me that they love my children. Whether it's the grandparents and their infatuation with each new skill or each little thing these kids say, or whether it's someone who looked into Cora's eyes and felt better, or just a casual friend who got some humor out of these little characters, it all swells my heart. It's those moments when kids feel like a gift of love, given to the world, for no other reason than to make people happy.

I write a lot about the absolute craziness and frustration that is a way of life in our household, but the other side, the bigger side, is love.

A secret message for R2

Today was not the lucky day. No discharge. I think I'm going to stop saying, "maybe it will be tomorrow," and then maybe it will be tomorrow.

Despite adding another diuretic and increasing doses on her medications, Cora's lungs still look and sound essentially the same: fluid-filled. She's showing some of the same heart failure symptoms we've seen in the past, namely enlarged liver (more than usual), some edema in the knees, a specific heart sound associated with heart failure, and then the difficulty getting fluid off her lungs. She slept almost the entire day today, and when she was awake, she seemed lethargic. Of course that worries us a bit, but the general consensus seems to be that if we can just get Cora's fluid balance right, she will be back to where she was last weekend and good enough to be at home.

Even if her heart function has decreased the most important thing is really, how does she seem? If she seems to be happy enough and doing okay, then she can go home even if she has poor heart function. But we still need to work on getting that fluid off and they will continue that over the next day or two. Tomorrow she will get another set of labs and see where things stand, then go from there.

In our household during this era of Star Wars infatuation, everyone has a name. Jason is Luke, I am Padme, Dominic is Anakin Skywalker, Cosette is Yoda, and Cora is R2-D2. I spent the day with Cora, and then Jason picked up the kids after work and we had dinner together before he headed in. On the way to dinner the kids and Jason called me on speaker phone. The first thing Dominic said was, "how's R2, mama?" We told him she was back in the hospital and he said, "is it a short one or a long one?" We told him is was a short one, and he actually took it pretty well. He sent Luke with a secret message to transmit to R2 back at the hospital, and the kids and I went back home.

I really hate that fear and stress and sadness have to be a part of our daily life. I hate it for Jason and me, but I really hate it for the kids. I hate telling them she is back in the hospital, knowing they know on a deeper level that it means Cora is having a hard time. Then there are moments, especially when Cora is home, that are clearly very stressful and sad. Moments when she turns blue or is struggling, and when Jason and I are working as fast as we can to try to help her. During those times, as much as I want to, there's no way to protect Dom and Cosie. Dom usually retreats to a corner and sometimes he gets tears in his eyes. There's absolutely nothing I can do about it, except hug them, and love them, and remind them that it's daddy's and my job to take care of Cora and that they don't have to do a single thing.

And then there's the bad that I feel about Cora, for all she faces, even in times when everything is relatively okay. Such a tough little muffin. So much tougher than me or any of us wimpy grownups.

Of course if I could weave our life, I'd fill it with sunshine and rainbows, and we'd all have gleaming teeth as we laughed constantly, surrounded by joy. But I guess that might not be better than what we have now, because despite all I could argue, the contrast does make things richer. We can't have that canned happiness right now, so we live for moments. Rubbing Cora's head until she went to sleep this afternoon. Cosie twirling and dancing in the courtyard when we were out to dinner, saying over and over again, "you wanna see me do that again?" Dom solemnly giving Jay the secret message for R2. Those were the good ones today.

Baby Lottery

We are still here at UCSF tonight, hoping that our little adventure will end tomorrow with us getting to go back home. It's safe to say we are all a little over the experience, especially Cora who has lost some of her pep since we arrived yesterday.

The kids are still at Grammie and Papa's house in hopes that Cora will be discharged tomorrow, in which case they will never have to know that Cora went back to the hospital at all. Dominic is so protective over her and he worries even when she has a doctor's appointment, so I wanted to spare him this little blip. When we dropped them off we told them that Grammie and Papa really wanted to have them for a sleepover, and we didn't mention anything about Cora. If she stays after tomorrow then we will need to get them and bring them home, because we know too well how these things can become drawn out. I feel like if Cora doesn't get discharged tomorrow, who knows when she will. Get in; get out. That's the idea. Otherwise you can get into the hospital vortex where everything gathers it's own momentum and before you know it, you've been here forever.

At this point the medical team is just watching Cora and waiting for her lungs to shed some of the fluid they've accumulated. She is on an additional diuretic now, and we will go home on that, so it's just a matter of fine tuning the dose and making sure that solves the problem. In the meantime she has quite the smoker's cough and is none too happy about it.

I stayed here last night and was hard pressed to put more than twenty minutes of sleep together in a row. There was all kinds of rigamarole when we arrived which went on until just before 1am, and then she had treatments every two hours and coughing spells in between that made it very hard to sleep. I gave up around 6am and went to get coffee.

One day when all my kids are grown and healthy(ish), I plan to go to a deserted island, stocked with gallons of mint chip ice cream, and sleep for approximately three months. Then I will wake up and read a book, which is something I have dearly missed. Just to read a book! That would be amazing.

Today when Jason and I were retaping Cora's tubes we decided to give her a break from her oxygen cannula and just put her in front of an oxygen mask for a while. We hardly ever, ever get the privilege of seeing Cora's sweet cheeks because they are forever covered with the tape that holds her tubes in place. My oh my, did she ever look beautiful with those cheeks exposed. It was so fun to see her little nose and to examine her face without all the obstructions. We both marveled at how different she looks, and I would add, how absolutely precious. I petted her cheek for a while, and we snapped a picture to remember what she looks like without that stuff.

It was just another beautiful moment. You see, Cora is like winning the baby lottery. I get that this might be a weird thing to say, but I really see her challenges as separate from her. Her little body has it's issues, but that is beside the point. Her overwhelming quality is that she absolutely exudes love.

A (hopefully) short trip back to UCSF

Nothing really to worry about, but Cora and I are spending the night tonight in our old stomping grounds at UCSF. She has been having some respiratory issues most likely caused by this virus she just can't seem to kick. This morning she also had a scary episode of turning dusky for quite a long time, so I wanted to err on the side of caution and call the cardiologist.

Of course he wanted us to come in, and while I thoroughly believed they would give her a breathing treatment or two and then send us on our way, Jason won the bet and they wanted to admit Cora for treatment. Her lungs aren't sounding good and also on X-ray there was much more fluid present than there was upon discharge.

In any case it all seems relatively minor and it should be a short stay. Cora has been very unbothered by it all and has been asleep for hours.

Earlier today we had a very normal day which included a hike for Dominic and me, throwing Dom and Cosie repeatedly at piles of pillows, and even brunch out with my mom and our cousins who were visiting from out of town. So in short it's just another day in the life: it included a scary episode this morning, a bunch of normal and fun stuff during the day, and a hospital stay tonight. I think we will have a few of these back and forths; we acknowledge and accept that. I'm just glad that Cora primarily lives at home and that this feels like a temporary glitch.

This morning when Cora was having her dusky episode and I was trying to console her, Dominic leaned in close to her and said, "You're okay Cora. Remember, you have a lionheart." Always good to remember that.

Baby in a Blanket

The day started off with a bang when Cora, after being up most of the night with her terrible cough, decided to pull her feeding tube out. Jason and I had learned how to place a feeding tube in the hospital back in December, but our skills were a bit rusty.

Let me just set the scene for a minute. We had been getting the kids ready to go see their cousins, but before we left we needed to replace the tube. Kids that are ready to go somewhere and then are halted in their tracks, are dangerous. While Jason and I tried to measure and mark our target destination on the feeding tube, remove the tape on Cora's face and hold the oxygen in place as she screamed and tried over and over to swat our hands away, the kids were engaged in a full wrestling match and taking turns screaming at the top of their lungs. After about an hour and a half we finally placed the tube. This was following a couple of failed attempts, a handful of very stressful color changes for Cora, an episode of Cora's oxygen tube filling with water and spraying into her nose, and about thirteen more screams of either, "Dom pushed me!," or "Cosie won't let me have a turn!"

I seriously wish someone would have been filming it. It could have gone viral.

When we walked into the house this evening after being gone all day, I had the thought that our house had been ransacked by raccoons while we were out. There is hardly a surface here that is not covered by some completely random item that has no business being where it currently finds itself. Right now on my beautiful couch, there is (among many, many other things), a light saber, a bottle of kids hair detangler, Buzz Lightyear, an enteral feeding bag, a cup, a dishtowel, and a little figurine of The Little Mermaid.

Our life is crazy, and I think it's safe to say that our house is reflective of that.

But aside from that and our stressful adrenaline-filled morning, we actually had a pretty good day. We are getting more and more used to living with Cora, and we're getting less freaked out by her episodes. My heart used to stop when she turned dusky in color or coughed so hard she retched. But those things happen multiple times every day, and we are learning how to live with it. Of course I still don't like it, but I know what to do to make it better. I have more faith in myself, and more faith in Cora and her ability to get through these things.

But the best thing that is happening is that we are bringing Cora out a little more. Letting her experience life, and she is carrying her goodness and her little peaceful spirit wherever she goes.

When we were in the hospital back in November and Cora was recovering from her first surgery, she was very sick. At the time, her chest was open, she had more tubes and lines than I could have ever imagined. I remember one wonderful doctor coming to look in on Cora one evening. At the end of the conversation he said, "I have every faith that Cora will get through this. One day she's just going to be a baby in a blanket." That always stuck with me.

I see babies on the street in their strollers or riding in a pack on their mamas, not attached to anything. They seem so free. They're cozy and comfortable and snuggly. You can pick them up any old way you want to; when they're hungry, they eat, and they're just so durable. Cora doesn't have those freedoms. She still relies on machinery; she eats through a tube; you can't lift her certain ways; and she is pretty fragile. But still she has very much become my baby in a blanket. I love picking out her outfits in the morning and playing peekaboo and gobbling her cheeks and toes. We are getting so much of the good stuff now.

Tonight we were at a friends' house and we made her a nest on an overstuffed chair. She kicked around and listened to the conversation for a while, until she got too tired and peacefully dozed off, so cozy, in the middle of all the action, and all our friends, and all the normal life that was there in that living room to be experienced. And she slept through the whole rest of the party. And she's still sleeping now, through getting in the car seat, and through the car ride and the transition to her bed at home. There she is now, in her jammies, with her lion.

And I am very, very grateful.

Some good progress, some psycho toddlers, and a memory from last fall

I've decided that writing this blog at the end of every day is kind of a bad idea. By the time we make it through a day, and all the way through getting everyone down for the night, I'm more or less dog tired, out of motivational feelings, and wondering what was so bad about my calm, mellow life with Jason long before we decided to take the one-way plunge into parenthood.

In any case, I'm writing this after another bedtime circus, so it might not sound as upbeat as it would have if I'd written it three hours ago.

But things are looking somewhat up around here. A couple of nights ago I was truly at my wits' end with everything, and then yesterday by midday I got a bit of a reprieve. Though Cora is still struggling to beat this virus, she seems to have turned a corner and is getting slightly better instead of slightly worse. We're having fewer scary episodes and more smiles. We ran an errand at the mall!

Meanwhile our other kiddos are acting like periodic psychopaths. I think we may be experiencing the after effects of so much chaos and such a strange lifestyle for a prolonged amount of time. Who knows exactly why, but they are both acting out and pushing us to the limits, every day, almost all of the time. I know that everything is a phase (I hope everything is a phase), but the current phase of perma tag-teaming us and behaving like twerps is a tiring one. They never act out toward Cora; just toward us. I'm hoping for a new phase soon.

Lately I've been fantasizing about last September when Jason and I went to Kauai for five long, luxurious days, all alone. Well, Cora came along for the ride, but she was in that very quiet, very portable phase. All we did for those five days was lounge on chaises by pool and the beach, read our books, sleep, eat, and swim. We didn't even snorkel. It felt like too much work.

I have often gone back to that place in my mind and reflected on how unaware I was of what was coming. I knew our lives would change with a third child, but I truly thought it would be easy-breezy, no big deal whatsoever. Third time's the charm. It was as though I was laughing with friends in a casual conversation about nothing, strolling along on a Sunday afternoon, and suddenly I fell into a manhole.

Thank goodness we can never know what's coming. We'd spend our whole lives filled with fear, and we'd always underestimate just how much we could get through.

Whenever I get overwhelmed I think of the advice a good friend gave me at the beginning of Cora's life. I was confiding in her some of my fears about how I was going to be able to raise a child with issues, and wondering how I would walk through everything that was coming. That day she told me something that stuck with me. She said, from where you're sitting today, you can't do those things. You don't have anywhere near the tools you'd need to make it through those scary things. But you do have the tools to make it through today. And when you get to tomorrow, and to the rest of those scary things, you'll have the tools then too. But you can't get them in advance. That's just not how it works.

When I feel like I can't do it, I remember that I am, actually, doing it. Right now. This is what "doing it" looks like. How I wish it looked more like a greeting card! But instead, it looks like a big, complicated, beautiful, horrifying, embarrassing, love-fest. Just a big old soup of life. And no matter how tired or frustrated I am by it, it is still pretty delicious.

Sick (Cora), and Tired (me)

The last couple of days have felt hard. Cora has come down with another (or the same) virus, and it has taken its toll on her. Last night was one of very little sleep as she struggled, and we repeatedly tried to suction her tiny little airways, and she barely slept, and we slept even less.

I took her to the cardiologist today just to make sure this sickness isn't indicative of something larger going wrong, but it appears, for now, she is managing all right through what really does appear to be a common bug. They did an echocardiogram and thankfully her heart function is right where it was when we were discharged. Both her doctors and we will watch her very closely as she gets through this sickness, because after all, a virus was the start of our very long ordeal back in December. As you can imagine, the whole situation is giving me a bit of post traumatic stress disorder.

Dominic said today, in his ever-growing obsession with Star Wars, "mama, I'm going to use the force to make Cora better." If only.

We are walking a road that is truly just a day at a time, an experience at a time. I always have to come back to that truism. Some days, especially days following sleepless nights, feel very overwhelming. I wonder if I will be tired and on edge for the rest of my life, and I wonder just how much on edge and for how long there a person can live. Will I ever feel carefree and truly relaxed again? I'm sure I will, but it's hard to imagine from today's seat on the roller coaster.

In my Mother's Day package, someone was kind enough to send me Calgon, which I find very apropos.

Just for the moment, all is well. The kids are sleeping. Cora is sleeping like the peaceful little puppy she is. Just splayed out on a blanket on the living room floor without a care in the world.

Time for bed for me, and hopefully a new perspective tomorrow.

After the credits have rolled

Our big outing today was to the pediatrician's office, where we will be visiting once a week from here on out. The good news is that Cora has gained weight since being home. She's a regular chunk now, weighing in at 10 pounds, 6 ounces. It was somehow very gratifying to know that she'd gained so well on our watch. It also kind of confirmed what we already know, which is that she's going to do much better overall being here with us.

We had a couple of episodes overnight and into the early morning that scared me. Just more of the same: Cora not being able to breathe well, me suctioning out her nose and mouth with the hospital-grade vacuum, her getting worked up, turning dusky and sweaty, taking a while to recover, and needing more oxygen. Those are the moments when I feel that I'm really in over my head.

But then she spent the whole day today reassuring me that everything will be okay. Dominic and Cosie went to Grammie and Papa's today, and Jay went to work, so it was just me and Cora Shabora sidekicking around. She was so content all day. Just the most peaceful, most grateful little child that ever lived. I was working some from the couch and she was kicking away on her little baby playmat. Then I put her in a bouncy seat in the bathroom so I could shower (a signature Mom move) and she was smiling when I got in, and smiling when I got out. So delighted to see me and just to be experiencing this normal life.

She definitely had a few additional lows today, but all in all, I truly felt like she was trying to tell me that she's happy to be here.

There is a funny phenomenon that happens, I've noticed, since I've started writing this blog. There will be a moment, a priceless moment, a moment from literature, a frozen time moment. I'll witness it, and I'll think, I should write about this tonight in my blog. It was perfect! It was beautiful! And then, the moment I think that, one child, or all three children, fall to pieces, and it becomes a spectacular circus act of chaos and a demonstration of poor parenting techniques.

Tonight it was when we were, all the five of us, in the kitchen eating dinner. Just for that one perfect moment everyone was happy. Cosie was in her high chair, yammering on about a princess movie, Dominic was peacefully eating his food and laughing, and Cora was in her bouncy seat, so delighted to be part of the dinner conversation. I looked around, and there it all was. Everything in the world to be grateful for, right in one kitchen. Each and every person, perfect.

Then I had a my moment of reflecting on it and wanting to write about it, to share the magic.

That was the moment when Dominic laid down on the bench, put his stinky feet on the table and started pushing around his dinner with his socked toe. I reprimanded him; he laughed. I told him to go to his room; he said no. The episode resulted in me dragging him by one arm into his room (while he was laughing and I was furious), Cosie exusing herself from the dinner table in order to scream, "I want a snaaaaack!," and Cora projectile vomiting from her chair.

Dinner was over.

I thought for a moment about not writing about any of it, because it just turned into such a profound cluster. But the reality is that, that is almost always how it is. Two slices of beauty and boundless love, sandwiched between a side of frustration at pushed limits, too much whining, and irrational rage in light of an actual situation. But then there's always another beautiful moment. Those are the ones that get you through.

It's true, since having Cora home from the hospital, life has gone on. We don't (unfortunately) just sit around all day praying, thanking god, and toasting each other for being awesome. We're just living what comes after the end credits. There is always laundry, there is always whining, there seems always to be more upon more throw up. Yes, all those realities are with us. But it is also deeply wonderful, and everything I had hoped for, all at the same time.

Tonight while I was folding laundry in the other room, Dom and Cosie were in the bath chatting nonstop, toddler laughter rolling out into the hallway. I sat in Cosie's room folding laundry, with Cora lying on the floor next to me. Every time I would look over from the laundry, I saw that Cora was staring at me. She never stopped looking at me. And every time I would catch her eye she would grin. A really big, chin dimple grin.

Her eyes were really saying, "I'm so happy I'm here!" And I don't know why, but I felt like they were also saying, "thank you."

Living the Dream

We've made it through the weekend, and it is wonderful, but man, is it crazy.

I am definitely guilty of having this fantasy that once we went home it would be all magic moments, everything would feel happy and easy. That hasn't exactly been the case. For as amazing it feels to have everyone under one roof and to see Cora in normal baby settings, it has also been pretty stressful, a lot of work, and even at times, scary.

Caring for Cora is definitely a full time job.
As I mentioned the other day, just the meds alone are a lot. But there is also the task of keeping her continuous feeds going, of staying on top of more or less constant throwing up, of re-taping her oxygen and feeding tubes if they get loose (and hurrying to do so when needed, before she yanks her feeding tube out), of suctioning her nose and mouth regularly so she can get the oxygen she needs, and of troubleshooting the medical equipment under the enormous pressure of beeps and of Cora turning colors. In short, it's stressful. Oh yeah, and we have two other toddlers!

Anyway, we are really doing okay despite everything. But I think I was just under this illusion that we would have a "well" child when we came home, and instead what we have is a very happy, much better, but still very sick child.

Still I am determined to gently introduce Cora to some normal life activities. So yesterday we went for a little outing with a friend in the afternoon to a nearby park so the kids could throw rocks in the creek, and so that we could get outdoors. Cora loved looking around at all the trees, and you could tell she was happy in the open air. Today Jason had to work so the kids and I took our operation to Grammie and Papa's house, our home away from home. Cora played on her little activity mat, the kids swam, and it was all in all a very ordinary, normal Sunday afternoon. Well, as normal as it can be.

And tonight I gave Cora a bath and she smiled so big. Then I dried her off in her little hooded lion towel. There she was, as I've always wanted, just a little baby in a fuzzy towel.

Despite all the stress, the benefits of course win, by far. I have these moments where I think, "how long will Cora be this sick?," or, "how in the world are we going to be able to do this?" But then, inevitably there is some grounding moment, something sweet or wonderful, or maybe something that requires urgent attention, and I have to remember to just do now. Don't get too overwhelmed, just see what's next. We will work it out. We always do.

It does make me wonder what I thought was so hard about having a healthy, typical newborn. Especially just one of them. Which, at the time, I remember thinking was very hard.

In light of all this I probably won't be writing nightly blog, but maybe I will. As with everything, I will just try to take it as it comes and do my best. Thank you for being here with us, and for caring about our story.

We Made It

I'm writing this post with all three of my children safely sleeping in their beds. What a wonderful feeling.

This morning, the first thing Dominic said when he woke up was, "is Cora coming home today?," and when I replied that she was, he immediately started jumping up and down and said, "I'm so excited! We made it, mommy! We made it!"

Most of today was spent trying to get discharged. Of course there were many conversations to be had: the discharge instructions, the pharmacist reviewing medications, the what to do in case of emergencies discussion, the electrophysiologist who came for one final interrogation of the pacemaker, and many, many more. We didn't actually leave the hospital until past 3:00 this afternoon, but that gave us plenty of time to say goodbye to all the friends we've made. We even ran into one of the very first nurses we had, actually on our second day at UCSF, who we hadn't seen since. She had a lot of catching up to do.

When we finally headed out, Cora was as calm as could be. She stared intently out the window the whole way home. She seemed fascinated by the light and the fresh air. I sat with her in the back seat just to keep an eye on her, and she did great. We listened to tunes and she took it all in.

Pulling into our driveway we were greeted with beautiful decorations on the front of our house, and a large welcoming committee of family and friends. The kids were bouncing off the walls with excitement. They nearly crawled into Cora's car seat and swallowed her up, so I had to fend them off a few times.

Most importantly, we did take our neighborhood walk. Cora's eyes were watering from the bright sun and the wind, but she kept them wide open and took it all in. When we got to the park, Dom and Cosie raced off to play with Jason and Papa, and I took Cora and held her on a bench while she sucked away on her binky elephant. I thought she might be edgy or panicky with so much stimulation, but she just calmly sat there, and every so often reached up to grab my face, like a security thing. She seemed utterly at ease with the whole scene as we sat there and watched all the good parts of life in action.

There were definitely some Hallmark card moments today, and there were also some real life ones as well. Simply trying to get the medications right required all the brainpower I had to offer. They were able to wean some of Cora's medications over the past few days, but she was still discharged on eleven medications, each with one, two, three or four doses, administered at eight separate times during the day. (Grammie made me a poster-sized matrix of it all that I now have hanging on the wall.) Needless to say, it's a lot to keep straight, along with the oxygen and keeping the continuous feeds going on the pump. We'll get there.

For now, I am just endlessly grateful for the opportunity to be home. For the opportunity to let love and family heal Cora even more than she has been healed already. I'm grateful for our loving family and network of friends who stand by our side through every single thing. I'm grateful for Jason, who I will now see again, every single day. And I'm grateful for these three kiddos who have truly blessed me with their presence. For Cosette, my little spicy meatball, who could not be funnier or sweeter or more likely to be a future homecoming queen. For Dominic, who understands life more than any child I've ever met, and whose whole universe became righted today when our family all moved home. And for Cora, my sweet little lionheart, the most peaceful baby who ever lived, the oldest soul I ever knew.

Home together tonight. No hospital shifts to take. No one leaving. Nowhere to be but here, together. As it should be.

Thank you, big, generous, super-god for all these million miracles.

Cora's Pen Pal

Thank you all for the incredible outpouring of love and support over the past few months, but especially after the last few days since we learned we were coming home. I started writing this blog because, frankly, I had grown tired of the question, "how's Cora doing?," and I wrote it for the audience of 20-30 friends, family members and coworkers I thought might read it from time to time.

I have been moved beyond words by how many hearts Cora has crawled into through these writings. Whenever someone tells me they read this, I nearly get tears in my eyes. Because I have been able to connect with people, some of whom I don't know at all, I have been able to survive this experience. Sitting down at the end of the night and reflecting on my day has become my regular routine and it's allowed me to process so many of the thoughts and emotions I've experienced. Thank you for reading it, and for over and over again reminding me that we're not alone.

Cora getting better and coming home feels like a victory for all of us.

Today at the hospital was spent preparing for going home. I met with the pharmacist, had final sessions with the physical therapist and occupational therapist, and spoke with medical equipment providers.
It is starting to feel real that we are leaving tomorrow.

As happy as I will be to walk out that door with Cora, and as delightful as it will be to bring her to San Rafael, I would be lying if I said a part of me won't be sad. We have formed some amazing relationships at UCSF. You can't go through something like this and not feel bound for life to the people who cared for your child. Jason and I both often try to think of the ways we could express our gratitude to the people who really saved us. I've thought about putting a list on this blog. But then I would want to write a paragraph or two about every single one so you would know just how they poured their heart into helping Cora, and this would quickly become a novel.

One day I will find an appropriate way to thank them.

The other people we will miss most is the family we have walked with side by side since the day we landed at UCSF on November 7th. Their daughter was born the day before Cora, and they were right next to us in the NICU those first few days. Then they moved down to the cardiac ICU, and the next day we did too. On a Tuesday their daughter had her first surgery. Then on Wednesday, Cora had hers. Their little chests stayed open for a week, then they were closed on the same day, one right after another. Everywhere we've been, on every unit, they've been right there with us. They've never left UCSF. Three and a half weeks ago their daughter had another surgery, and two days later Cora had hers. Only last week, Cora turned and started to get better, while their daughter turned and started to get worse. And now we are leaving, and she is much, much worse.

I visited with them today, as I have done nearly every day for so long. They are facing terrible decisions, and are living life's terribly awful and incredibly unfair hand. As I held on to their little girl's leg today and petted her beautiful head of hair, I prayed for the same kind of miracle we've seen with Cora. It just isn't fair. Why should we be leaving and they be staying? Why should the thousands of prayers work in favor of Cora, but not in favor of this little angel who is so absolutely and completely worthy of saving?

Through all these months, I always hoped that one of us would walk out of the door, and the other one would be right behind. But the girls' little partnership isn't going to go that way, it appears. We have always joked about them being pen pals one day, although of course no child born these days will ever know what a letter is. But we promised to keep them in touch through the years, two special friends for life, who can relate to one another because they are special and they are survivors.

I don't know why I'm writing this all, on the eve of our coming home. There is of course so much joy in it for us. But there are people that have shared our world and become like a family to us over the past six months, and we will deeply miss them all. Some are caregivers, some just other families walking this impossible road.

We will always be grateful to each of them and will, I'm sure, feel linked for life. Cora's triumph is not just coming home. It's that she has indelibly attached us to the many people who have cared for her, to our community, to our families, and to love in general. I know that no one of us will ever be the same.

Some reflections as we prepare for home

This morning on rounds the team reviewed plans for the next few days, then there was much talk about Cora's discharge. We discussed follow-up appointments that need to be made and logistics that need to be orchestrated. But there was also a discussion about just how remarkable it is that Cora is ready for home.

Rounds are usually a very serious and academic thing, which is why it was so touching to me to have the team of fifteen or so individuals, who we've come to know so well, spend time marveling at the progress Cora has made. They discussed her most recent echo which shows near normal heart function. Everyone just shook their heads in amazement.


I want to tell you about some things that happened before I started writing this blog. Back in December, we were discharged following Cora's first open heart surgery, which was to repair her coarctation of the aorta and a large hole in her heart. She had struggled following the surgery and we had some very tenuous weeks in the ICU as she made her way back to health. Eventually we were sent home and we expected Cora to get better. But instead, she got worse with each day that passed. We went in and out of the hospital not knowing what was wrong, knowing in our hearts she was not well.

On December 28th I took Cora to Marin General one more time. Her breathing was so labored it was almost as though she was doing crunches with each inhale. Over the two days prior we had watched her turn blue at least half a dozen times. We were at our wits end. Upon taking one look at her, the attending pediatrician at Marin General took one look at her and called for a transport unit back to UCSF. He could see that she was very sick.

I'll never forget that transport ride. I sat in the back with Cora who lay there in the enclosed isolette, and there was an ominous feeling all around us. I felt very much that this was going to be the beginning of a long journey. Thank god I didn't know then how right I was.

For the next few days Cora struggled, and was almost immediately transferred to the PICU. We consulted with various medical teams who all weighed in on what her issues could be. The cardiologists insisted her problems were not heart-related, because her coarctation and VSD had been successfully repaired, and because echos showed normal heart function before her discharge in early December. But eventually one very persistent doctor persuaded the cardiologists to take another look.

And the rest is basically history.

That echo on January 2nd showed heart function that was not sufficient to sustain her little body. The next day we almost lost Cora and we watched, helpless, at her bedside as a team emergently intubated and stabilized her in front of us. A week later a biopsy of the heart indicated dilated cardiomyopathy. We were told that there was very little hope.

I remember that night of the intubation as it settled in that it was very possible we were going to lose our little girl. There are no words to describe being on the receiving end of those discussions. Over the next four months, we witnessed more emergencies, we were given worse odds, we provided advance directives, and we discussed things like withdrawing support, and palliative care. As you know, we have been through periods that have been very, very dark, though none worse than when nearly three weeks ago, we stood by as the team worked to resuscitate our daughter, who was, for a short time, gone.

I'm writing this now, because I want it to be part of the official record that Cora wasn't ever supposed to get better and go home. Of all the scenarios we were presented, everything before and including heart transplant, Cora getting better and going home was not among the probable outcomes.

But yet here we are. And I am busy preparing things, and she is very much coming home.

One of our most favorite doctors told me when we returned from Stanford and he reviewed her echocardiogram, "it's as though she got a transplant, but it was her own heart that she received." Because to these doctors, her heart only barely resembles the heart of that child who came back to UCSF, so sick, on December 28th.

As we were all fretting and as my heart was breaking, Cora was quietly walking her life's path, which, clearly, was to get better and to be here. I am so very grateful that I will have the opportunity to do some of the things that flashed before me back in the PICU -- to go for walks, to take a hike, to go to the zoo. All the things Cora had never experienced. The things I feared she never would. We don't have any guarantees, but we now have a chance at things that I would have given anything for.

So on rounds this morning, the team appropriately took a minute to marvel at just how astounding it is that now, on May 15th, we are planning for discharge. One surgeon said, "I don't know how to explain it. When I looked at her echo today, I really could not believe it."

To which I replied, "What can I say? She's magic." And they all agreed.

Pack your bags, Cora Shabora

Hallelujah, day we have been waiting for... We were informed today that the team is planning to discharge Cora on Friday! Yes, this Friday!

She's continuing to make progress, and at this rate there just isn't a compelling reason not to let her go home. Tomorrow morning she will get more labs to confirm if she's been tolerating changes to her medications, and later in the day they will try increasing the dose on one of her heart meds. If she tolerates that, then Thursday they will try moving her feeding tube from NJ to NG. What we were informed however, is that even if she doesn't tolerate the change to NG, they will re-place the NJ and discharge her anyway.

So she may have an NJ tube, we already know she's going home on oxygen, and she'll be discharged on between 10-15 medications, but life will go on in this new and crazy way, and we will be able to handle it, I know.

I really can see the light at the end of the tunnel. And I really believe it's time for us to go. In December when we were discharged I was filled with trepidation. She seemed so sick and delicate. The difference now is that we know her so much better. We know what to look for. We won't be surprised if we have a couple more hospital stays in our future, but we'll root for the best, and we'll live the hell out of life, even if life later sends us in another direction.

If we know anything, we know that all we have is right now anyway.

The reality is that Cora is a child whom everyone would really be more comfortable keeping in a hospital for the next two or so years. She is very fragile and, as you know, skates a very thin line. We've discussed this at length with various doctors. But I truly believe in the bottom of my heart that life isn't to be lived in a hospital. That Cora deserves an opportunity to live without monitors, without vitals being taken, without the 24-hour a day florescent lighting, and without a large team of people discussing her, in detail, at the start of every morning.

She just wants to live out here. With us. I know it. She wants to see you at the park and the grocery store.

Today Jason and I were talking about the reality of her coming home. We know having her home will present challenges. But at least they will be new challenges. And after all, we're both pretty sick and tired of the existing challenges.

When I told Dominic and Cosette that Cora is coming home soon, they lit up. "But when is Friday?," Dom asked. An eternity away for a four-year-old. But I know it sunk in because on the way home I could hear him saying, "now Cosie, when Cora comes home you can't wrestle her right away. You just have to pet her and stuff like that, because she might not feel good right away."

Tonight I picked up the house and washed Cora's car seat, swing, and bedding. Dominic and Cosie cleared out some toys to make space for the toys that Cora will inevitably accumulate as a child in this household. Tomorrow we'll get the carpets cleaned, and we'll clean the rest of the house. It's almost like we're preparing for a royal visit.

Princess Cora, bravest of the lionhearts, is coming home.

It will be okay

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

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

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

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

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

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

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

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

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

Just a short entry, containing absolutely nothing noteworthy

It was another good day for Cora -- she's chugging her way along and has built up quite a stretch of progress. As I've mentioned before the only things really keeping her in the hospital at this point are finalizing the correct doses of her medications and then transitioning her from NJ tube feeding to NG. We will be working on both of those things over the next few days.

It is a given that she will be discharged on oxygen and will still require the feeding tube, as well as a hefty buffet of medications, but we can live with that.

I had a great Mother's Day. I was able to spend some time with Jason's family over breakfast this morning, some one on one time with Cora, and some time with Dominic and Cosie and friends of ours at Dolores Park in the city. It was such a beautiful sunny day that just being outside made me happy. I loved going down the slide with the kids and watching Dominic bravely conquer the big play structures all on his own. Watching them play, there was a moment when I wished they would never get any bigger than they are today.

Needless to say I am so immensely grateful for my family, and especially for these little beings who have so deeply enriched my life. They are, without a doubt, one hundred percent crazy, but they are beautiful and strong and loving and wise and delightful, and each of the three of them is exactly the right child for me. Funny how that works out.

Mom of the Year

We had an early Mother's Day celebration today and our whole gang of family met at the hospital, visited Cora, and then walked to Golden Gate Park to have a picnic and play. It was awesome to all be together. Not much makes me happier than being with my family.

I was pretty surprised when we got to the park and my sister Amy presented me with a giant basket of Mother's Day cards and goodies. There must have been a hundred cards in there, some from family and close friends; others from people I've never met. I continue to be floored by the overwhelming generosity I've been shown. The cards, the letters, the care packages, the emails, and the comments on Facebook and to this blog -- all have touched me deeply. I thank you so sincerely for letting me know you're there and that you support us, and that Cora is a part of your daily life. I honestly feel like I have been given strength through this process because of other people's willingness to carry some percentage of it on their shoulders, in order that the load wouldn't overwhelm me.

It was surreal and moving reading all of the beautiful comments people wrote about what a great mom I am, and how lucky my kids are to have me. However, I dare say rumors about the caliber of my mothering may have been overstated! As an example, let me point to the moment, shortly after reading the lovely cards, when I screamed at Dominic, loud enough to turn heads at the carousel. It was so perfect actually. We had just had these picturesque moments when all the kids were gleefully tossing a frisbee as we nibbled on our lovely food and read cards from Cora's loyal fans. Then Dominic laid down, screaming, on the pavement to protest having to share his ice cream, Cosie body-slammed Dom in the stroller and bit his nose, and they both cried all the way back to the car. (This moment will likely be the subject of late night text sequences between my family members, on which I'm not included.)

God, I love motherhood.

Bless the greeting card manufacturers, but it just really isn't like they make it out to be. At least not for me. There is absolutely nothing heroic about my mothering techniques. For every moment where I have really shined, there was one when I thought, if this situation were played on a billboard for all my friends driving by to see, would I be proud? Not so much. I guess it's just tenacity more than anything. And my deep down belief that if you just love the hell out of your kids, even if you're a complete bonehead, you can't mess them up that badly.

Speaking of loving my kids, Cora has had another good day here in 7 North. She's still receiving her chest physical therapy and her lung treatments to help her overcome this virus. She looks good. Lots of smiles and that signature Cora delight. She loved her visitors and being with the family. She was born into a social family and has fallen nicely in step with all of us who believe life is just better when shared with other people as much as humanly possible.

Right now she is sleeping like a little angel, surrounded by her growing army of lions. She is the definition of precious.

A few days ago, a nurse asked me if I worried that when we take Cora home, she will not be accepted by our family and friends because of her genetic disease and her challenges. I almost laughed. I worry about a lot of things, but I never worry about that. Cora, star of the internet! Beloved baby. I worry more than anything that all you baby vultures out there will just eat her up.

All the various fortunes

Today was the day! Cora graduated from the cardiac ICU and was moved to the step-down unit. She had another solid couple of days and as of this morning was completely off her drips, which meant she was cleared to move on.

She is in an isolation room because she is still positive for the respiratory virus. The nice part about that is she doesn't have to share a room with anyone. But obviously we are hoping she can clear the virus soon. Now that she's in the step-down unit the primary goal will be to get her into the best possible position to go home. That will involve tweaking medication dosages, settling on the right feeding regimen (right now she is still on continuous feeds through her NJ tube), seeing if we can potentially wean down her oxygen requirement, continuing to tweak her pacemaker settings, and monitoring her heart function, which became somewhat marginal following her surgery.

I have no idea how long we will be there but my guess is, not long.

I woke up feeling like I might be getting sick so I skipped the hospital today and Jay hung with Cora instead. The kids spent some time with their beloved Auntie Marie and Grammie and Papa, as they do every Friday. It almost felt like a normal day, picking them up, then running errands, and hanging in San Rafael which I so rarely do. I even got a car wash. Impressive.

We stopped at an art store to get some supplies and I noticed it was the annual Art Walk that takes place every year in our town. Last year the four of us walked downtown to see one of our friends who was showing an amazing exhibit at a downtown gallery. Her installation piece, called Fortune, consisted of thousands of red and white paper fortune tellers spilling out from the corner of a room. Each person that visited the exhibit was asked to take a fortune, either red or white. It was a tribute to autism and symbolized the random chance by which some children are struck with the disease.

But it could also be carried out to include the random draw by which any child is handed any medical or developmental challenge, big or small. The reality is that most of the fortune tellers represent safety and health. Most of us draw those ones and we barely realize the others exist. How ironic that last year at the show, I drew a "normal" red one and tucked it safely in my purse. Safe from disaster! Or so I thought.

But someone always has to draw the white fortune. That's just the way life is. The exhibit wouldn't be nearly as beautiful if all the tellers told the same happy fortune, and besides there is much to be learned and gained and grateful for, I am seeing every day, from drawing the alternative.

In the art shop tonight, a trio was playing Willie Nelson's beautiful song, Sweet Memories. Maybe it was the memory of my parents blaring that song on road trips in our big brown van, and of my Dad's undying love for Willie and a moment where I missed him. Maybe it was the perfect harmony of those three voices, or maybe it was the moment when I noticed and completely appreciated Dom and Cosie coloring on a sheet of butcher paper on the floor. Maybe it was the text Jay had just sent me with a beautiful picture of our little love, Cora, who has overcome so much and who still faces so many unknowns. Who knows, but I got teary eyed for a minute. Time stopped, and my heart overflowed.

Progress, fun, dress-up, and my wish

Today was fun. There's a description I don't often use.

When I walked in this morning Cora was awake and alert, just staring curiously at her nurse as she administered the morning medications. As soon as she saw me she lit up, and within a few minutes she was literally grinning. A smile wider than I've ever seen her give. It was beyond words.

I tried to capture it on film, but nothing will cause a baby to stop doing something cute more quickly than pulling out a camera. Sure enough by the time I got my phone ready the moment had passed.

The change in Cora over the past week is amazing. She's a different baby entirely. Well, she's her, but for a while there she was completely gone. Now she's back, nearly all the way. And she just warmed my heart today. I held her for a long time and she surrendered to a deep sleep right there with me. I read her blog posts (not mine, that would be weird) and told her stories. Mostly I just looked at her and adored her little bits, just one mom in a long procession of moms who have done the very same thing a thousand times. I love the normal stuff.

She is still making progress weaning down on the drips that are keeping her on the ICU. I'm sure within the next few days we will be officially booted from 7 East. She just looks way too good to be there. In fact today she played with toys, looked in a mirror, had tummy time, wore a shirt and even got dressed up by me and her doting nurses (complete with accessories.) It was ridiculous, as the photos will confirm.

So hard to believe that's the same girl that was getting chest compressions less than two weeks ago. Life is crazy. And it just goes on and on, over itself, astounding you.

I'm starting to daydream about having Cora home. I know it will be challenging and there will be a plethora of medications, feeding through a tube, and still an oxygen concentrator wherever we go. There will also be her very tenuous health and the uncertainty of the path ahead. But I'm starting to make my very long list of things I can't wait to do. There are so, so many.

For some reason the one thing I want to do more than anything is to go for a walk in our neighborhood. Cora has never once been in a stroller or a baby carrier, and she's never seen trees or birds, and she's never felt the sun on her baby skin. I plan to change that on day one of our dismissal. And on that day I hope all our neighbors who are reading this will smile and wave from their porches as Cora goes by, and I will remember that this was the very thing I always wanted.

Eye on the Prize

Cora has made some great strides in the past few days and they are even talking about transitioning her out of the ICU in the next couple of days. She has weaned all the way down to just regular nasal cannula oxygen and off of the hi flow, and they have begun to wean down her drips as well.

Although she's not her old self yet, I can see her coming through a little more each day.

There are still many questions about her heart function, but the reality is that even if it's not great, she could move to the step-down unit so long as she looks good clinically. There are medications to be tweaked and other items to follow up on, but we are definitely, for the first time in a very long time, moving toward the yellow house.

I can tell Cora wants to go home. I most definitely want her to come home. I just know in my heart that she will do so much better than she ever has if she can be with us, around all the crazy chaos of her brother and sister, and seeing the world, one little piece of our neighborhood at a time.

The Benchmarks

Today our Little Lionheart is six months old.

If Cora was a typical baby she might do some of the benchmarked baby tricks like sit up, roll over, push up, or crawl. She would probably be trying solids and holding her own bottle, or at least drinking from a bottle. She might be babbling, playing with toys, and laughing.

We all know, she can't do any of those things. But there is an almanac full of beautiful accomplishments this girl has made that blows the "what to expect" books out of the water.

The first and most astounding thing she has accomplished is that she fundamentally changed my perspective as her mother. All my adult life I have been afraid of having a child with special needs. What would I do if my child was different? What if my child couldn't walk or talk or read or play sports or be just like every other kid out there? What if my child looked different? I truly believed I wouldn't have the strength or the guts to mother a child like that. I don't have any patience, I am too judgmental, I am too afraid of what everyone else is thinking.

Cora's miracle is that she changed my mind. I won't lie -- I was still scared in the early weeks of her life when more and more bad news kept being revealed. But then something extraordinary happened. She worked her way into the inside of me, and she changed me.

I have accepted at the very bottomest bottom of myself that Cora will not meet the typical benchmarks. I know very little about what she will one day accomplish, but I do know that. That's not what's amazing. What's amazing is that I no longer give a crap about the stupid benchmarks.

Every step forward, however baby-step-like it might be, means so much more to me than it would if she were a typical child. Each step is made out of gold. I absolutely celebrate each tiny thing, and thank god for them without secretly asking for more. I am grateful for the days she doesn't need to be on a ventilator, for the times when I can hold her, for the few milliliters she drank from a bottle a couple of weeks ago, for the deep and sincere way she can look me in the eye. When she held her head up a few days before surgery, I could have died right there. Life seemed so completely fulfilling in that moment.

Cora's milestones have been all those things I just mentioned. But more importantly, her accomplishments have been to make people reconsider how precious life is, how ridiculously rich we are to have kids to cuddle, friends to laugh with, and healthy bodies. She has reunited me with friends I haven't spoken to in years. She has made nurses and doctors fall in love with her. She has brought many, many people to prayer. She has beaten the odds twenty times when her body had all but given out, but her spirit still had more to say.

And she can grasp toys, and hold her own hands, and hold mine. And when she's feeling good, she can even hold her head up.

What a wonderfully clever little being she is.

For Cora, big things are possible

Well, we did it.

It wasn't always pretty but our team managed to find a way to finish The Relay for the ninth time, despite ninety-seven degree heat on Saturday, one runner lost due to injury, and the fact that Jay and I had together completed a total of about five training runs leading up to the event.

As usual it was a blast -- a weekend filled with a disproportionate load of laughter considering how much physical pain it inflicts, and how very little sleep it offers. It was really wonderful just to be with our friends for the weekend and leave most of the stress and heartache of our normal life behind.

As we passed the Cora Lion bracelet from runner to runner, I think we all had a chance to reflect, each in our own personal way, on Cora's journey. For me, there were many moments when I felt for whatever reason I didn't have the umph to finish my legs. And during those times I asked Cora to give me a little of that strength she so flawlessly demonstrates everyday. It made me think of how ironic it is that I should be asking for something from her, when of course it should be the opposite. But as you know, she is my angel baby who always gives more than she takes and who quietly shows people so much more grace than we could ever model for her.

At one point in the night I was running in the pitch black, unable to see more than a few feet in front of me by the light of my headlamp. I couldn't help but think about the similarities between that experience and our journey with Cora. Life is so much less scary when you focus on the three feet ahead rather than all the fears about what's coming a hundred yards or a mile ahead. There are always those moments where you think, oh crap! I'm all alone in the dark and I don't know what's coming or how long this will go on! But then you take a breath, remember Cora and get washed with love, you believe you are in fact not alone, and you trust that eventually the road will lead somewhere you recognize or understand. It's amazing what you can do just by putting one foot in front of the other.

It sounds like Cora enjoyed her weekend with Grandma, Aunties and many friends. It felt so good to get texts and photos of Cora with her various admirers. Not much has changed on the medical side, she is still in the ICU, more or less in the same shape as last week. But she got lots of holds and gave lots of little smiles. One of my friends said Cora spent a long time telling her about the day in her sweet little baby voice. She does love attention.

I love that I can share Cora with our family and our community, and that even though she can't seem to leave a hospital room she has already touched people and opened their hearts. I know she touched our team members' hearts, and it felt like being in all those hearts this weekend she was able to experience some beautiful moments out there in the big world.

Shin Splints

There aren't any real changes to report tonight. For the last few days Cora has been very much the same, with the exception that for some reason she didn't sleep at all last night or for more than ten minutes today. She wasn't angry, just a little bit feisty and not restful at all.

This morning I got to hold her for a while and that made her happy. She didn't sleep but she studied me and Grammie and Papa, who were visiting, intently, with those inquisitive eyes. At least it made her content for a while. The rest of the day was filled with her normal meds, and lots of chest treatments and suctioning to clean out the junk in her lungs, mixed in with visits from friends.

All of Cora's medications and support mechanisms have been unchanged the last few days. She is still on a hefty dose of diuretics to dry out her lungs, as well as various heart medications and all manner of other things. And still on the hi flow oxygen; still working pretty hard with her breathing. She is periodically spiking a fever on top of everything so she is also continuing antibiotics. They are especially cautious of infections since Cora has "hardware" in her now.

This weekend Jason and I will step away from the hospital duty and let some of or friends and family sit with Cora. Every year for the past nine years we have participated in a running relay race which spans 200 miles of the Bay Area. We do the relay as part of a team called Shin Splints, which should indicate about how serious we are about the competition. We may not be fierce competition, but what we lack in athleticism we make up for in fun. Ironically, the relay benefits an organ donation non-profit organization. We figured that of all the years we've participated, given everything we're going through, it would only be right to keep the tradition alive. Plus it might be nice for us to get some fresh air.

This year our team will run in honor of Cora, and we will pass that Cora Lion bracelet, the one that Liz wore when she did the Escape From Alcatraz race earlier this year, from runner to runner all the way from Calistoga to Santa Cruz. I'm sure the entire time I'm running I will be dreaming of a day when Cora can see things and do things beyond the walls of a hospital. But I also know we all will be drawing strength and inspiration from her, and the resolved way she keeps on going, no matter how much pain or how difficult the road.