Baby on Wire

Tonight is feeling like one of those nights for me. After one of those days. I am definitely not a spiritual giant. More like a torched person in need of twelve hours of sleep and a trip to Mexico.

I wish I could say that Cora turned a corner today but she didn't. Well, she almost turned one but it was in the other direction. I had a terrible déjà vu around 11 today when Cora, who had been struggling to breathe all morning, turned super blue again, stopped moving air well through her lungs, and again the masses of doctors, nurses, and everyone in between, gathered, thinking she was heading over the edge. Thankfully instead of intubating her right away they waited and watched her, and she caught her balance, however tenuously, about two minutes before she got a tube down her throat.

For about the 20th time in her life, all the "code meds" (that's what they call the drugs used to resuscitate people) were drawn up in syringes and placed at her bedside, just in case. As were all the intubation tools. One of the doctors set his chair outside her door and parked himself there most of the afternoon, reluctant to move too far away.

I really don't know which is worse, watching her struggle from the terrible discomfort of being intubated, or watching her gasp for air, trying to make it work on her own. Both are, as you can already imagine, very, very undesirable.

Ugg...

Jason is with Cora now and he thinks she looks slightly better. Possibly her lungs are functioning a little better than they were this afternoon.

If you have ever seen the movie, "Man on Wire," you will understand what it's like to sit in Cora's room and watch her this past week. It's like observing someone walk a tightrope about 1500 feet above ground on a terribly windy day. The consensus is that no one trusts Cora, and she us all very nervous.

Thank god for the amazing nurses in 7 East, nearly every one of whom I would gladly entrust with my child's life. They're like this special breed of super-nurse, they have poured their hearts and their talents into Cora, and I could never even begin the task of putting into words how indebted I feel to so many of them. The only reason Jason and I can ever walk away from Cora is that we know they watch her like a hawk. (One of them was having fun with Cora's new footwear last night and left a note on our whiteboard for us this morning - see photo.)

Still, at the end of these days I am just shot. I had fun with Dom and Cosie this evening, I took them to the park and then we went out for tacos. They delighted me, as usual, but I am just beat. I knew I had lost my sense of humor when, at bedtime, Cosie came running into my room singing "When You Wish Upon a Star," wearing nothing but a diaper and a pair of Mr. Potato Head's eyeglasses, chased by Dom who was shooting her in the head with his Buzz Lightyear Nerf gun, and I didn't even crack a smile.

Ok, maybe a little one.

A Heavy Heart

Cora trudged along today, more or less about the same. They decided to extubate her tonight, mostly because she was exerting so much energy being furious about having the breathing tube in, that she wasn't benefitting from the rest that being ventilated normally provides. She was in a cycle of requiring a tremendous amount of sedatives to keep calm, and meanwhile becoming more and more agitated every time she woke up a little, thus requiring even more sedatives. So they decided to see if she can tolerate being off of the ventilator and back on hi flow oxygen again.

As of tonight she is tugging hard and struggling, but she's getting through for the moment. Hopefully she will acclimate and improve over night and into tomorrow.

We learned tonight that the cultures taken last week came back positive for a respiratory virus. This explains why her white cell count was so high and why she had a fever in the days following surgery. Given that she has been on the mega antibiotics for the last three days, there isn't any new action to take, but her doctors are gratified knowing there might be a reasonable explanation for her respiratory distress. They will continue to watch her lungs closely with daily chest x-rays, and she'll go on getting lots of breathing treatments and suctioning until it clears.

We also learned by way of an echocardiogram today that Cora's heart function has meaningfully worsened. This refers to the actual squeeze of the heart, the metric that was poor enough to necessitate her being on the transplant list as of a month or so ago. As you can imagine, we are "sensitive" to her function diminishing. It could be explained by a number of reasons, again one of which could be the trauma of the last week or so, but regardless of the reason she was started on two new medications today in hopes that her function will improve.

But the hardest part of today was watching a family next door to Cora say goodbye to their child, for no good or particular reason except that to him and to them, life was not fair.

If you're reading this tonight, I hope you'll not only pray for Cora, but for all the other children and all the other stories being lived out there tonight.

I don't know what the next few days hold. To ever think I do is laughable. This afternoon and evening I started to drift into the land of the big unanswerable questions, and the fear of how long this might go on, and how many difficulties may still lie ahead. I know that's unproductive territory. It's so hard to relax with what's going on. My foot is constantly bouncing, my mind is constantly going, and as usual, the only thing I can do is believe in Cora and in everyone taking care of her.

I've written it before, but I just keep coming back to it. The only possible way to walk through this life, whether your child is in an ICU or whether you've never lived a catastrophe, is to be in the moment. You can hope for the future, but you've got to love what you've got, right now. Things change; the unfair happens. But it's amazing to line up the procession of "now's" I've walked through, and to admire how beautifully life goes on.

So very tired of all of this

There is no real progress to report this evening. Cora is still on the ventilator and not showing the improvements that we had hoped she would be starting to make by now. Then again, she's not getting worse, so I'm grateful for that.

She's still so stressed and mad every time she comes-to, so they added another sedative drip this evening to keep her more comfortable. She's so unhappy with this situation. Because she is intubated she can't make any sound when she cries, so you just see her staring at you with these incredibly sad eyes, crying as hard as she can, and yet the room is completely silent. Tonight she had big tears as well. It's basically awful. Just the worst.

I just want her to be able to sleep through this terrible phase and never remember a thing.

This morning a family friend and I took Dom and Cosie to the farmer's market. They bounced in the jumpy houses and took a pony ride and tasted fruit and ran around. At one point Cosie was having trouble climbing up the ladder to a slide and Dom, without being asked, just lifted her foot up to help her. They break my heart with their goodness. Love just pours out of them.

Honestly, as I sit here at Cora's bedside listening to the hum of the machines, getting up every few minutes to help comfort Cora, I really feel I am at a loss. There is a sizable pit in my stomach. Just a few days ago Cora was smiling and cooing and learning to hold her head up.

Those happy days feel very far from where I'm sitting tonight.

We knew it was going to be somewhat challenging but I had no idea it would be this hard for her. I think Jason and I both feel this terrible weight, like we caused this by putting her through the surgery. I know it was necessary and we didn't have a choice. I believe that and I know it's true. But my mom emotions beg to differ and it's hard to remember that. It's hard to swallow because this process has made her, at least in the short term, so much sicker.

Honestly, I don't know what to feel. Scared, guilty, tired, grateful, hopeful, powerless, sad. Those are just some of the feelings I have running on a continuous loop, with an emphasis tonight on tired. So hard to watch someone I love to the ends of the earth, endure so much. It just goes on and on for her, and there doesn't seem to be a single thing I can do about it.

A wish for someday

Today was much, much, much, much better than yesterday.

For the most part Cora just rested in a nice drug-induced slumber. Every couple of hours throughout the day she would come-to, furious, and show everyone just how "here" she really is. Out of a dead sleep she would wake up swinging punches at whoever or whatever was in arm's reach. She absolutely detests having a breathing tube in, and I can't say I blame her in the least. But for that reason we have to keep her pretty deeply sedated, and when she wakes she gets topped off with more meds. She badly needs her rest.

Jason and I both had a hard time sleeping last night. For me, I would review every painful detail of the day, then crash from sheer exhaustion, then wake up with my mind racing an hour later. Eventually it was daylight and I headed back to see Cora. Jason picked up the kids from Grammie and Papa's where they'd been since Wednesday (surgery day) and they all went to an outdoor festival and played.

I spent most of today examining every little inch of Cora's baby body, thanking god or whatever generous power out there allowed us to keep her for another day.

Mostly I just leaned over her bed with my elbows on it, holding one of her hands in mine, and with my other, holding her little foot against my face. It felt good to keep a firm grasp on her today.

She's been very stable on the ventilator. She still has a mild fever and her white cell count is very high, but it's lower than it was yesterday before they started her on a second and very monster antibiotic. Most of her labs looked good for the majority of the day and she is saturating her oxygen reasonably well. She received a blood transfusion -- her third in the last 5 days. She's a little vampire.

This afternoon Jay brought the kids to the hospital for a brief visit and so we could do a parental switch. As usual they were both so sweet with her. The first thing Dominic said, despite the ventilator and all the new lines and tubes, was, "mommy, she looks so cute!"

After a short while I took the kids to meet our friends for dinner and some general caroming around in the warm, non-San Francisco air. I was conscious of looking at their perfect little beings with the same admiration and gratitude I have toward Cora. Cosie ran about three thousand laps around the courtyard, each time saying to my friend and me, "watch this!," never tiring of the pure excitement of the wind in her face and her newfound freedom. She is, to me, the epitome of being in the moment and living the truth that wherever you are, it's enough.

Watching Cosie run reminded me of a line from a book someone gave me when I was pregnant with her:

"Sometimes, when you sleep, I watch you dream, and I dream too...that someday you will run so fast and so far your heart will feel like fire."

I pray with all my heart that one day Cora will have that same opportunity. And that on that day, when she comes gleefully running toward my open arms, I will remember the sheer miracle of it all.

The most beautiful moments in the world

Cora is sleeping and she is safe as I write this.

But today we experienced the scariest, most serious moment of our entire journey up until now.  In the road of ups and downs, it was the downest down yet.

We left last night around 1am, and Cora was definitely struggling. When I called at about 5:45, the nurse said she had been having a hard night, so I decided to come back in and let Jason get some much needed sleep. It was obvious Cora was very sick when I got here. Her oxygen saturation was very low and she had a bluish hue throughout her little body. One of her lungs had developed a fluid pocket, her immune system was mounting a big response to something unknown, and she was working very hard to breathe.

The morning unfolded with Cora getting lots of attention, more tests, more medications, and more therapies. She went on hi flow oxygen to provide more respiratory support, and they went up and up on the levels until she was receiving the maximum possible assistance. She still seemed to be in pain and uncomfortable, so there was a lot of pain medication given, and her oxygen saturation stayed low.

I was worried about her, and there was a heavy feeling in the room.

At about 10, Jason arrived at the hospital and so did his parents, Grammie and Papa. We were visiting and loving on Cora, as usual. Then shortly after they arrived, Jason and I were talking about Cora's color and how she didn't look good at all. Our wonderful nurse suggested we do a little procedure to help her breathing. Jason and I were standing on one side of the bed, helping, and our nurse was on the other when things deteriorated over a few seconds. Our nurse yelled for help and for Jason to push the "code" button.

Cora had stopped breathing and turned completely blue. You could see on the monitor that her heart had ceased beating, and that the pacemaker had kicked in to provide a minimum amount of beats. But she didn't have any pulses, and she wasn't herself there.

The next twenty minutes will forever be imprinted on me in slow motion -- each person, each movement, each word. At first all I heard was a loud alarming in my head, a sound that drowned out every other noise. I later realized it was the sound of the alarm triggered by the code button Jason had pushed, but it was a fitting soundtrack for the way I felt.

Then this incredible orchestra of people filed into the room, with twenty or so just outside the room, and each person began doing his or her individual job. We lived what we have all seen a hundred times on ER or Gray's Anatomy. We watched, helpless, as they bagged breaths into Cora and performed chest compressions on her as she lay there sideways in the bed like a little lifeless doll. They called for and administered medications. After what felt like an eternity, her little heart snapped itself back and you could see her begin to move her arms and legs. They put in a breathing tube to stabilize her, and slowly things calmed from there. It was amazing to see the skill and love this team of caregivers infused into her with each deliberate movement they made.

Jason and I watched the entire episode in the room, side by side.

It is a tremendous and humbling thing to watch your child balance on the tiny needle between life and death, and to watch the big serious stuff of life be decided right in front of you. I know from my own experience that life's most painful moments are also the most beautiful. In normal life and normal time, you spend so much time trying to control things. Get the kids to bed on time, don't be late, make it happen. But in moments like that, you have to surrender it all, open your hands and let it all go. And to see life with that clarity is an incredible gift.

There was a moment during those slow minutes where I felt a giant and pure and profound love wash over me. My child. My beautiful and perfect girl. How wildly lucky we are to have such a special girl, and how much my love for her would wash over the entire city if it could be seen or touched. How much I could devour each chub on her, or each delicate little toe. I really would eat her if it was allowed or possible.

And in that same moment that the boundless love washed through me, I truly did feel her soul snap-to and settle in, as if to say, I'm not leaving.

That love I felt, that ginormous love, became a feeling that she will be okay. She reassured me in her magic way of calming everyone and erasing fear.

This afternoon and evening she has been very peaceful. She's sedated and very comfortable. The ventilator is breathing for her so that she can rest, and the pacemaker is safely in place and will catch her heart if it tries to take any breaks. She's behaving herself for the time being.

I keep putting my cheek on her chubbies (the sides of those chunky thighs) and the soft of her peachy head. She is so utterly precious.

She has climbed out of another hole back into my arms, and into the open arms of all those out there who love her and cheer for her from a distance.

After Surgery

Jason and I went home last night and slept for a few hours. I called around 6am to learn that Cora had a lot of pain overnight but was overall holding steady. I called again at 8:30 on our drive in, and she was doing well, but when we walked in about a half an hour later she was having a hard time.

It's been a busy day around here. There were lots of issues of all kinds throughout the day, and she had periods where she was doing better and periods where she was doing worse. It's possible it's just her body mounting a stressful reaction to the surgery or to the use of the defibrillator last night. It was a big surgery with a lot of hardware, and it will hopefully just take her a few days to get back to her baseline. We know that the days following cardiac surgery are always eventful; I guess I was just reminded today.

This morning her electrophysiologist and the rep from the pacemaker manufacturer were in the room tweaking her heart rhythms. The control device is basically a laptop attached to a thick cord with a magnetic disk on the end of it. To change any of the pacemaker settings they just set the magnet end on Cora's tummy and program away on the laptop. It's wild. In our conversation with the rep he reminded me that the device Cora has was designed for individuals of average age 72, so of course it will be a little bulky for her. I'm sure she'll acclimate, but for now she's definitely uncomfortable.

In fact it's taken me about two hours to write this post because Cora has needed a lot of attention this evening. Her little pain cry is so heartbreaking. She's getting a blood transfusion and more medication right now. Hopefully it will help.

I really do hate seeing her this way. It was somewhat different when she had her first surgery because she was brand new to us, and getting to know her was done in the context of the ICU, the machines, the medication drips, the procedures. Of course it was horrendous to see her that way, but now we've had a chance to know Cora and to fall even more in love with her. We've seen her kick around and smile and be very happy. So it is extra painful to have to set her back in this way, even though I know we didn't have a choice. The look in her eyes seems to say, "why?" And I don't have a decent answer.

One day I'm sure this will all be a distant memory. But for tonight I'm feeling sad for my little bear.

Resilience

I'm writing this staring at my little Cora Lionheart, beautiful strong warrior, who made it through yet another challenge today.

First let me say she is stable now.

About six hours after she initially went down for surgery, she came back to our familiar home on 7 East, the Pediatric Cardiac ICU. As we feared, Cora had a rougher go of things and her heart arrested four times during the procedure, requiring them to use the defibrillator each time.

My heart sunk about six floors upon hearing those words from the surgeon.

Other than that (!) it went okay.

This girl. I swear.

The electrophysiologist explained that her heart has just been so sick that it is very sensitive. It doesn't want anyone messing with it, screwing things into it, sewing things onto it, or anything else. But the good news now is that she has the pacemaker in place and everything is working as it should. There won't be any more arresting.

Jason and I looked at the x-ray of her chest and abdomen and it is just full of equipment. We can't see the pacemaker generator in her belly from the outside yet (because she is very swollen) but once she gets back to normal it will be very obvious.

In the ICU they were able to get the breathing tube out, which is great. Cora hates that thing and is so very uncomfortable when it's in. Other than the trauma of pulling it and her extreme dislike of that process, she has been calm for the most part. She just woke up a little bit ago in pain, but she got more meds and is right now resting with her elephant binky.

Sweet beautiful girl. The holes she has been able to climb out of have been enormous and deep and countless, but no matter what, she just keeps right on climbing. Still, the last nearly six months have been, well, in a word, f'ed.

Here's hoping this is the bottom, and that the road from here is up and leads to a nice little yellow house in San Rafael.

The eve of what feels like a big day

Tomorrow is the big day. I could tell today that Cora sensed it. She seemed unsettled and jittery, and she didn't want to have anything to do with the bottle when I tried. She just seemed restless.

At one point she got the doctors' attention for doing a particularly crazy heart rhythm (even for her), but in the end they decided it wasn't any more dangerous than the wacky rhythms she does all the time. Plus she's going in tomorrow anyway.

I'm sure Cora's mood today was feeding off mine because of course I am feeling nervous. Under any other circumstance we're told that getting a pacemaker is "not a big deal." But for a few reasons it will likely be a bigger deal for Cora.

First, it will be another full sternotomy (aka open heart procedure), plus a longer incision to place the device in her tummy. The other thing that makes me nervous is that Cora has historically not appreciated being paced by a device. Immediately following her initial surgery back in November they tried pacing her many times for various reasons, and she always responded by dropping her vitals and scaring the bejesus out of everyone. Then they tried her on a drug back at Stanford to increase her heart rate and she really struggled. They also tried pacing her in the cath lab a couple of weeks ago and her heart became significantly less efficient. So even though I know she needs to have the pacemaker, I worry her body is going to throw a fit about it.

I left Cora this afternoon and switched places with Jay. The kids and I went for dinner at a friend's house and Dom and Cosie rode around in their hot pink, electric toy Cadillac Escalade. It was awesome. Every time my mind wandered to tomorrow I thought, "do your job." And tonight my job was to be the good strong and happy mom that these two needed. To play outside, to read out loud an exhausting number of pages from the Star Wars field guide, and to just keep on laughing.

Dom knows Cora will have surgery tomorrow and that she is getting a box in her tummy that will help her heart beat. Even he knows that your heart is what makes you big and strong, so this is important. In his mind she became even cooler tonight for getting a box. He thinks it is for her batteries. And as we all know, things with batteries are cool.

At midnight tonight Cora will get labs and a chest X-ray and the whole pre-op work up to make sure she is green lighted for the procedure. They will also stop feeding her and transition her to IV fluids. We anticipate they will take her down for surgery in the early to mid afternoon.

Three ICU nurses, one of the intensivist physicians, and Cora's cardiologist all came by to say hello this evening and to check on her. Further proof she really is in loving hands, and tomorrow's surgery will be no different.

My prayer tonight is the same as it always is: bless Cora and give her strength. Let me be the mom Cora and the other kids need. Let me be able to walk the road, whatever the road is. Let me not spaz out. Let me be in the moment. And then I thank god for all the big and messy and wonderful pieces of our amazing life.

A First

Cora and I had fun at the hospital today.

I got the green light to try feeding her with the bottle twice a day. That means we get to turn off her continuous feeds for an hour beforehand, which is big progress. Usually her doctors are very much against turning feeds off because the primary goal is always weight gain, but this time -- much to my delight -- they are indulging me in another goal.

Cora did great. She took about 15 ml each time (about half an ounce), which is great progress for someone who couldn't even remember how to latch onto the bottle as of two weeks ago. You can imagine how happy it made me to feed my daughter, burp her, and have her drift off to a full-bellied sleep in my arms afterward. Pretty heavenly indeed.

I appreciate those normal baby moments so very much.

A bit later this afternoon I put Cora on my shoulder so she could look at the ocean out the window, and I noticed something amazing. She was holding her head up! She's never done that before, and she's barely seemed interested in trying. But today for about a minute, she held it up. I craned my neck so I could see her doing it, instead of just feeling her doing it, and it was about the most precious thing I'd ever seen. She looked like she was trying so hard. She would look side to side with only her eyes, as though she had to concentrate to keep her head steady. Finally she got tired and rested her head on my shoulder, but the moment will stay with me. I know she is very close to mastering the art of head-holding because I kept working with her on it through the afternoon, and each time we tried she was able to hold it for longer.

Babies are always like that. They try something so tentatively and it feels like they'll never be able to do it. But then you blink and you can't remember them not doing it. For nearly six months I've wondered if Cora would ever be able to hold her head up. Such a simple thing of course, but something that contained so much to me.

And then later I put her face-forward on her boppy pillow, and for the first time she just sat there and looked me in the eyes like she'd done it her whole life.

Those are the things that kill me as a parent. All the firsts. A big one today. But also all the lasts.

Because even though on the down side, Cora has had so many delays on things like holding her head up and growing, on the up side, it's meant that I get to have my snuggly little newborn-like baby so much longer than I normally would. And so for every little step forward she makes, I will celebrate. But with each one I will also say goodbye to the phase before, as every mom has to, and as every mom knows, those moments hold all the happy and all the sad together in one.

No matter how hard I try, there are just so few words to really describe all the ways life can just burst your heart open. Today was just another day when that happened for me.

A special treat, and being loved to life

Jay went into the hospital this morning and I spent the day on Dom and Cosie detail. We had a fun morning running errands, hanging out and inventing the perfect costume for Dom's latest obsession, Anakin Skywalker. (He has broadened his love for Darth Vader and now wants to play all the sides of the him.) Star Wars has fully invaded my house and even Cosie, who is supposed to be putting herself to sleep, is currently rambling on from her crib, "I don't like Emperor Palpatine..."

Cora had a decent day over at the hospital. There was some question about her lungs having an increased amount of fluid on them so she got a chest X-ray. We will likely hear more about that on rounds tomorrow. But other than that, no drama. We are still planning for surgery Wednesday. There will be labs and tests tomorrow and Tuesday in preparation.

Despite the fact that she seems to have been doing better Cora hasn't shown us her happy self since last Saturday when we arrived. She's not upset per se, just not very smiley or happy. Hopefully that side of her will come back soon.

She did receive a special treat today -- our friend Liz (the same one that did the Escape from Alcatraz race last month) came to give Cora and the other patients a private violin concert. According to Jay, Cora was very intrigued and it sounds like Liz had most of the kids mesmerized. I've had the privilege of hearing her play and can attest that she has that affect.

This afternoon I brought the kids in to see Cora and she lit up when they arrived. They played with her and just wanted to hug and kiss and generally smother her.
Even though their play -- however loving -- is a little rougher than what Cora is used to, I never stop them from doing it. I figure part of the burden of being a third child is that your siblings are often going to try to love you to death. But I think it's good for her. It's like another medicine, and I actually see them loving her to life.

Some of our friends had come in to visit Cora and so we all went over to the playground at Golden Gate Park. It's always so bittersweet to have those "family" moments where we are all together, but knowing that we're not. Not really. It's like we all sort of pretend it's six months ago when Cora was still in my tummy and it really was just the four of us. That's at least how I have to think about it so that I can be happy and just enjoy those moments, and leave my heavy heart aside for a while. I know Cora understands.

Tonight at bedtime Dom started crying, "I want daddy, and Cora, and you, all at the same time." Though it feels lately as if we are rounding one of the final turns, there's still no denying this is an impossible situation.

Cheers!

This afternoon Cora's NJ tube got displaced so they had to pause her feeds for a couple of hours. I started to notice that the more time that went on, the more Cora was smacking her lips and starting to look hungry.

Six weeks or so ago I posted that Cora had been successful at drinking a bottle, but ever since, she seems to have completely forgotten. We have painstakingly worked with an occupational therapist in the weeks since, but no matter what tactics we have tried, she has never again been able to figure the eating thing out.

Well, today after seeing her look genuinely hungry, I tried again. And guess what, she did it! She didn't take much, but she showed me the most important thing -- she remembers how. And the second most important thing -- that she doesn't want to eat unless she's hungry. Can't say I blame her for that. At this point she will stay on the continuous NJ feeds but her success today will help us advocate for a plan in the not too distant future where we can more regularly work on eating by mouth.

Other than that it was a fairly mellow day. Jay took the kids on a hike with some friends, and Cora and I hung at the hospital. I gave her a bath and we had some visitors, and that was about it.

Cora's lab results are still looking good and infection-free so we are on track for the surgery, which is planned for Wednesday. Yesterday, Cora received a blood transfusion and that seemed to help with her breathing and her overall pep. I am very much hoping that after she recovers from her surgery next week we will be on a fast track to going home. She's shown us tremendous progress over the past few weeks and it's clear that she's ready to get on with things. Lord knows we are ready too.

Puppy Love

I can't remember the last time Jason and I both were home for dinner and bedtime. I'm sure there are many stay at home moms and dads who can also say that, but in our normal life we are very spoiled in that both Jason and I have jobs that allow us to be home by the late afternoon. We almost always share that evening play, dinner, bath, story, and bedtime together. I've missed that over these past nearly six months.

But afternoon Jason and I extended our normal sixty-second passing of the baton and the four of us met for ice cream downtown. It was a hot, sunny, beautiful day, and chasing the kids around and hearing their delicious contagious laughter, I could almost forget our troubles. Almost. There is always the reality that a piece of our family is missing, and always a sick and unnatural feeling that she should be there. But that aside, it was a really wonderful hour or so.

Jay went on to the hospital and the kids and I had a great evening together doing a play date and dinner with friends. The weather stayed beautiful -- one of those nights where the air held onto its warmth even after the sun went down. We ran around and played in our friend's backyard. Everyone was happy; we made it through another day.

Earlier at the hospital the stars aligned and both of my sisters came for a visit at the same time. Cora was very excited. After a rather uneventful physical therapy session we had a treat. Kai, the pet therapy dog, came to visit Cora. It was awesome. Mostly Kai just stayed calmly near Cora and looked at her. At one point we helped Cora feel the velvety texture of Kai's ears. Just to see her little hand on something so completely outside the hospital experience...a soft puppy ear. To be honest, Cora didn't get too fired up about it, but my sisters were basically bawling the entire time.

I am one of those very lucky people who has the very best of what siblings can be. All the love, all the support, all the laughter, all the inside jokes, and all the shared experience of a life lived side-by-side. When we were little we bickered like the best of them. But one day when I was twelve and they were fourteen, our dad passed away. It was as clear as if someone had drawn a line in the sand and said: from this day forward, no screwing around. Stick together and that's that. And we always have, through enough stuff to fill a somewhat thick novel. But no matter what chaos has come our way, rule number one has always been adhered to. Walking through this experience with Cora has been no different. There have been more tears, but there has been no less laughter.

I'm so grateful my kids have each other, and I will spend my life trying to form them into a little three-member mafia, just like the one I am so blessed to be a member of.

Steps forward (made in bunny slippers, of course)

Cora seemed today as if she was making small strides in the right direction with this bug. She was definitely feeling better than yesterday but she still had some throwing up and didn't yet seem her happy self.

The surgery is tentatively scheduled for Wednesday, but it will be contingent upon her kicking the recent infection and on all her lab work coming back clean. She is still finishing a course of antibiotics which I hope will help make that possible.

Today the electrophysiologist showed me the pacemaker device they are planning to use. Because she's so small, even the smallest one is going to be very large on her (like a third the size of her abdomen.) It seems strange to think of a mini computer being implanted in her tummy, connected to what are basically mini jumper cables, fixed to her heart. I'll just toss that in my backpack of strange and very alien concepts that are my reality. I've built a nice collection.

One of my amazing college friends spent the day with me today, doting on sweet Cora and keeping me entertained. Back in those days when we used to yap for hours on our porch, I certainly never would have dreamed we would one day be yapping at my child's bedside in a hospital. That's life, I guess.

We are continuing to feel so loved at UCSF. Each day we've been there, some combination of doctors and nurses have stopped by to see Cora and to welcome us back. I can truly feel how loved she is, and it comforts me beyond measure. I even got to see the nurse I wrote about in one of my entries that always told Cora (in a very thick southern accent) that she was, "such a fine baby girl." I got to tell her that those rich and loving words rang through my mind and carried me through many dark moments when I doubted Cora or my ability to bear things.

We have received enough love through all of this to feel embarrassed about.

I'm not sure what this experience will mean in the long term, what the purpose will be (if any) or what the lessons will look like when they're all told, but I know that Cora has touched people and she has changed some of them a little bit. She has changed me, that's for sure. Things I once feared I can now approach bravely. I can see kids facing challenges -- other kids in the hospitals we've lived in -- and more than what apparatuses they're attached to, or what disabilities they display, or what sad story they may be living, I can see them. Their big smiles or their loud cries or what their faces look like. And I can most of the time see everything that's right with Cora, more than everything that's wrong. She has led me through a magic door and into a new side of me.

Those Eyes

Today was rough. Cora continues to fight whatever bug she's contracted and she spent the entire day throwing up and looking lethargic and uncomfortable, and just in general she seemed sad today.

"Access" is a word that we are all too familiar with now, and it has come to be the story of Cora's life. For those that may not know it in our context, it refers to intravenous access, or a method to deliver meds, blood transfusions, and other therapies. Cora has historically been a "very hard stick," meaning that it's nearly impossible to get an IV on her, and anyway, peripheral IVs are very short-lived so she has always had central lines. (A central line means that there is a catheter in your vein that travels all the way to your heart, through which things are dispensed.) Today the subject of access came up again, and it was decided that Cora would get a new central line, and so she did. It was, to be exact, her tenth central line.

That's too many.

It's too many lines, too many meds, too many chest x-rays, too many echos, too many labs, and way, way too many throw ups, and I am having a night where I just deeply regret all the too many's my little angel has had to endure.

The electrophysiologist came this afternoon to discuss the pacemaker surgery, the rationale for Cora needing a pacemaker (namely that her heart is likely to stop without one), and the bigger picture for someone who will receive lifetime pacing. The actual surgery won't be planned until Cora's white cell counts are reasonable and her infection is eradicated. The doctors and surgeons are still discussing the appropriate device for her -- they would like to use a bigger contraption because it has the most sophisticated technology, but the control box also has to fit inside her very little tummy, so it may not be possible. Either way, she will need future surgeries just given how young and small she is now, and the fact that this will be a lifetime issue for her. Once you get a pacemaker, you never go without one. The EP doctor also discussed one of the concerning factors which is that long-term pacing can lead to cardiomyopathies. This is an extra concern for Cora given her complicated cardiac history.

Oh yeah, and Cora hasn't gained weight in two weeks.

Sigh. What was I saying yesterday about staying in the day?

I did have a couple of wonderful moments tonight. One was giving Cora a bath and eating her toes afterward. The other was earlier this afternoon, when I could tell she was having a particularly hard moment. I laid my head in the bed right next to her. In her calm and quiet way, she just laid there and locked eyes with me. Our eyes, six inches apart. There is something about Cora, because when she truly looks at you, she seems to understand you and everything else on a very deep level. It's like she talks to your soul and creates a moment beyond words or understanding.

Usually when she's sick she never wants to look you in the eyes. I'm sure it's because she doesn't want to show you her pain, because she is just wise and compassionate like that. But this afternoon for a minute, she let me in. An overwhelming moment of love, regret, sadness, pride, gratitude, and love again. That washing-over-you love that makes you feel very safe and very vulnerable, all in the same moment.

Oh, there was one other moment I just remembered. I had her on my lap and we were watching a show together on hulu. (Photo below.)

What I Know

Cora had a rough day. It started out with a high fever which then led to multiple needle sticks for blood draws, lots of throwing up, and more tests. Her white blood cell count spiked so it is pretty clear that she is brewing a bug. She was whimpering most of the day and I could tell she didn't feel good. Poor little bunny.

They moved her out of the ICU and into the step down unit until her surgery. We knew it would happen and that they had just wanted to get a good sense of her abnormal heart rhythms, but still we miss our private room!

Earlier in the day they had been talking about scheduling her surgery for possibly Wednesday or Thursday but I think it's safe to say that idea is off the table for now. It would be very dangerous to operate if she has any kind of infection, so the doctors will be conservative and no doubt err on the side of caution when scheduling it. She started on a course of antibiotics this afternoon, and we will have preliminary results from her blood cultures tomorrow morning. It's just another situation where we will have to wait and see.

Earlier today someone sent me a link to another mom's blog, the mom of a 5-year-old child who, like Cora has a genetic disease and all the host of problems that can accompany that. Only this mom lost her beautiful son this weekend. Reading her story sunk my gut and it hit me, as you can imagine, on a very personal level.

Sometimes I think of Cora's journey as though the worst is behind us and now that she has overcome heart failure, it will all be up from here. I'm always trying to make sense of everything, to create a beginning, a middle, and an end of everything. To pinpoint my location in the narrative. But when I'm honest with myself I have to admit that I have absolutely no idea where in the story we are, and while I know what lies behind us, I truly have no real understanding of what lies ahead.

I don't know the story of Cora's lifetime. No human being does.

As much as my heart connected with that mother who I've never met and likely never will meet, as much as it broke my heart, it also drove me into the present.

I don't know what's coming but I know what I have right now. I have a beautiful, strong, brave, peaceful, and amazingly special little girl who has already spread a tremendous amount of good in the world. She has an army of prayer and a small city of people who believe in her, none more than Jason and me.

The message that blog gave me today was to appreciate and accept life exactly as it is today. Stop thinking: it will be better when, or... as soon as we get through this.... This IS it. And there could be nothing better than having these three perfect children, in this very moment, where it's all happening. These three that I am lucky enough to mother, and the one partner who never lets me down.

There is nothing better than the moment you realize you love a child beyond any kind of love you ever knew, beyond anything that comes from your brain or your ego, and without any conditions or limits. Cora reminds me of that love every day.

The Taco Truck

We made it!

Cora got her fourth ambulance transport this morning, this time from Stanford to San Francisco. This time she even graduated to being able to ride big-girl style on a gurney. I rode with her in the ambulance and she stayed calmly awake the whole time, just looking out the window with those big curious eyes.

I can't tell you how good it felt to walk through the doors and onto the 7 East Cardiac ICU unit, where we've spent so much of Cora's life. It really was a feeling of coming home. We got a wonderful welcome from everyone, and they were all amply impressed by how much Cora has grown in the two months we've been down at Stanford.

The most amazing thing was that as soon as the gurney pulled through those doors, Cora started grinning and kicking and talking, and generally perked up more than I've seen her in a while. It lasted all day. It was remarkable and I can't explain it, except to say that there is a feeling there that we are so loved and cared about, and Cora, being the queen of intuition and feelings, surely sensed it.

There was certainly nothing wrong with Stanford and I hope this doesn't come across that way. Stanford is like a beautiful, Michelin award-winning restaurant. The food was amazing, the ambiance was beautiful, but we often felt like we were dining alone. And to be honest, I'm just the kind of person who is more comfortable eating at a taco truck, just so long as I'm surrounded by friends and lots of laughter.

It took a while to get settled in at UCSF -- they decided to place a new NJ tube, they got an EKG, and drew labs. All the normal housekeeping things. The plan is to monitor her for a few days since she is in a very precarious position with her progressing heart block. Tuesday morning she will be discussed at the weekly Cardiac Conference, where the entire cardiac staff will discuss and presumably schedule her pacemaker surgery. The cardiologists suggested it would likely be mid to late next week.

When I picked Dominic and Cosette up this evening they gave me the running leap hugs, the ones that overflow your heart in an instant. We played and laughed all evening. It was one of those quality days where I felt grateful for all the myriad gifts that surround us.

In the bath tonight I said to Cosie, "you are so beautiful." She replied, "I'm not beautiful! I'm just sitting here." But she looked so especially beautiful to me having not seen her in a few days. I honestly think, through some tremendous grace, that these two have been more or less unscathed by this crazy life we've been leading. Tonight they were literally glowing with happiness without a care in the world.

There will be more twists and turns, I know. But for tonight, my heart is less burdened than it's been in a long time.

(Maybe) heading back to San Francisco...

Supposedly we are heading to UCSF in the morning. We were informed this afternoon that there is a bed available and that it has Cora's name on it. In preparation for the transport she got a new IV, so she is spruced up and ready to go, and a few doctors even came by to wish us well.

Even with all that, there is of course no guarantee on our transport. But we are hopeful it will be tomorrow.

Given the severity of Cora's heart block she will be admitted back into the ICU when we arrive at UCSF. And we expect that her pacemaker surgery will take place next week although we don't have an exact date yet.

As for today, it was just Cora and me at Stanford for the majority of the day. We passed the time playing peek-a-boo, playing with her rattles and toys, and going for a walk around the third floor. Halfway around the floor we sat down and she took a nice long nap on my chest. That was awesome.

While we were sitting, a new friend came by. She is a mom we've seen since we first arrived here. Her daughter is in the CVICU, and she doesn't speak a word of English. In the past we would always smile at one another and leave it at that. But yesterday she came and sat next to me and just started speaking to me in Spanish as though I understood every word. It was amazing because we were actually able to communicate for about twenty minutes with just my very rusty high school Spanish, some pantomiming, and the deep bond of shared experience. Today she asked if she could hold Cora and we chatted some more.

Cora is like a universal language.

One of the things that has been most precious to me during this experience is the handful of parents we've really connected with. In the room where Cora is now, we share with a wonderful family who very much feel like old friends. They are just another set of parents, exactly like us, who is trying to make it work and accept life in the midst of what seems to be a very unacceptable situation.

There are so many brave people out there.

Some moments for my box of beautiful memories

I came back to the hospital this morning and reunited with my little squish muffin. It was so special to see her and see her recognize me, and she made her little humming sounds nonstop, almost as though she was telling me all about her last few days. My sister Amy was here for a procedure my niece was having, so it was a regular old family party. First things first we gave her a bath and got her spruced up for the day.  She always enjoys a good sponge bath. Then Jason and I took her for a wagon-free stroll around the third floor. Pretty revolutionary to just carry your child around. Granted there was an IV pole in tow, but it was progress, and it was awesome.

Mostly today was about waiting. Now that we know Cora does not, for now, need a heart transplant, we are restarting our prior plan to transfer back to UCSF. That's where we have our strongest relationships, it's where Cora's primary cardiologist is, and it is also the place that will be most convenient for all the clinic and follow-up appointments she'll need through the years. We will get the pacemaker there if the UC electrophysiology team agrees she needs it.

The team here knows we plan to transfer, so the doctors here spoke with the doctors at UCSF and now it's just back to the old game of waiting for a bed space to become available. Maybe tomorrow, maybe not. We are on hospital time, after all.

In between the waiting this afternoon, I laid Cora on the daybed next to me and we chatted for a while until she fell asleep, all cuddled up to me. I had never done that before, mostly because there hasn't been a cot within cord distance for Cora in any of her previous rooms. The thought occurred to me, and then I thought the nurse might not like it, and then I thought, who cares -- I am lying down next to my child for crying out loud.

Having her there right next to me, I felt like I had just been plugged in for a charge. I could almost see the bars on my battery flashing more and more with her filling me up, minute by minute. It's a simple thing, to lie there right next to your child with your cheek on the top of her head, and your hand tucked around her little bum. But I don't need to tell you that it was far more than that for me.

The Never-ending Gobstopper

We just got back from down south. I really had such a wonderful time with the kids, and I loved being able to spend solid time, engaged time with them and everyone having such fun. This morning I started to feel incredibly uncomfortable, right around the time Cora went in for her procedure. I questioned why I was gone and felt out of my mind that I wasn't near her. But then the kids lured me back into the present with their funny, loving and overall wonderful selves and I was so glad we were able to have that experience together. As Jay said, I was doing my job of keeping them happy; he was good with Cora. I will go down to Stanford early tomorrow morning and join him as we sort through the next few days.

Cora made it through her cath and did very well. Jason was there at the hospital and by her side every possible minute before and after. The procedure produced a lot of information, but much of it we really don't understand yet. Of the things we do understand, one is that the pressures in her heart were very reassuring. This confirms that her heart has dramatically recovered from its terrible function, at least for now. It therefore also confirms that she does not need a transplant at this point.

Unfortunately the other thing we understand after the electrophysiology study today is that her heart's conduction system is very sick, so much so that it is insufficient to sustain her. They were able to ascertain that the type of heart block she has is very serious and puts her at risk for a sudden "event," which is the gentle term doctors use for cardiac arrest. This means that Cora will need a pacemaker in the very near future -- like the next week or two, as we understand it. Putting in a pacemaker means another open heart surgery for Cora, which lodges a big knot into my stomach.

The doctors also noted some other serious problems with the way Cora's heart functions, but we don't understand those as well yet. We will need to have many follow up conversations with the doctors at Stanford, and with Cora's primary cardiologist at UCSF in order to really digest everything.

So although on the one hand not needing to pursue transplant at this point is a huge relief, it does appear that the road is stretching a bit longer. And at minimum, discharge is off the table for now. I'm sure we'll get there, but first we need to get through the surgery, and then we will need to consult with some other specialists in other areas to tease out all the issues which have come to light.

I was talking with a friend tonight about how, mostly, things for Cora seem like one big, giant, continuous ball of sucky-ness. It's like a never-ending Gobstopper. Now matter how long it goes on, it just keeps sucking. Yes, there are different colors and textures, but you're still stuck with the same old Gobstopper, and you can never seem to get to the bottom of it.

If you  haven't noticed by now, I like analogies. They help me manage life.

Poor Cora. Of course the hardest thing about all of it is accepting all the awful things she has had to endure already in her five months of life. I hate standing by and handing her over for one more thing, to one more person. It is truly heartbreaking. I feel like it's impossible to protect my sweet girl. That she will never be able to get back on track and on with the beautiful business of life. But that line of thinking leads nowhere.

All the big questions I love to ponder will be answered in time, just not in my time. 

I have to come back to the now and protect her in the small ways I can: being there, holding her, surrounding her by visitors who love her, wrapping her in special blankets, decorating her room with a zillion guardian stuffed animals, trying to show her she isn't alone and that she is so beyond loved. 

That's really all I can do.

Just a brief update, written in exhaustion

Tonight I will be brief. It was a long but very fun day on my end, with some very good times spent with family and old friends. The kids were thrilled all day long, and they partied strong from 6am until 10pm. It's amazing what these Disney endorphins can do.

Jay had another day of the same at the hospital. Cora is still seeming somewhat uncomfortable and definitely still working hard with her breathing. The idea of discharging us before the cath was now off the table, mostly thanks to the help of our insurance company who is thus far proving wrong everything I previously believed about insurance companies. They have really helped us through this process.

This afternoon one of the doctors informed Jay that the cath had been moved up and will take place tomorrow morning instead of Thursday. There was no explanation as to why. My heart sank when he told me because of course I won't be able to be there. I thought about changing our plans and coming home early but Jay talked me out of it. He says I am doing the important job of making our very wonderful kids happy and that he can handle things there at the hospital. I know he can do it, I just feel crappy about it happening when I'm so far away.

It's all so very frustrating but if I know anything by now it's that very little is in my hands or goes the way I'd like it to.

Happy, amongst all the other emotions

Greetings from Anaheim! I told Dom where we were going when I woke him up this morning, and he immediately went into Cosie's room and said, "Cosie, we're going to Disneyland! We're gonna see Darth Vader and Buzz!" She rolled over, rubbed her eyes, and said, "I wanna see a Storm Trooper."

We have had a wonderful day down here, and even got to see some of our southern cal relatives, who we don't see nearly often enough, and my sister and her family, who we adore.

Jay is with Cora and she is tucked in and sufficiently snuggled for the night. She had a so-so day, still breathing way too fast for no known reason. He said she just seems a bit uncomfortable and restless. But he also said when he walked in today and picked her up, she went right to sleep. She was happy to see her daddy.

It sounds like the hype about wanting to discharge Cora before the cath has died down, and more likely discharge won't be until after Thursday now. Of course, everything hinges on the results of the cath. Given the improvement on echo, the cardiologists expect to see reassuring numbers in the this procedure. However something may turn up that isn't visible on echo, which would be surprising and complicating. Then there is the additional variable of what the EP study will reveal (if anything definitive).

It definitely feels strange to be down here with the kids and a friend of mine, without Jay and Cora. Despite how much fun we had today, every time I saw a baby roughly Cora's age I couldn't help but ache a little. Couldn't help but, for a minute, wish with all my heart that I was schlepping her around in a carrier like I did so many hundreds of times with the other kids, till my back was going to break, and my feet were going to fall off.

That's how it should be.

But for today we are happy down here. Mixed happy. New happy. Happy-sad. All the myriad emotions, as usual, but with an extra helping of happy today, which feels nice.

Out of left field

When I walked into Cora's room this morning, both of the other kids in tow, I was informed that the team at Stanford is considering discharging her as early as Monday. As in this coming, two days from now, Monday.

Surprised? I was too.

Their feeling is that Cora is stable "enough" to be at home with us managing all the elements of her care, as opposed to a hospital staff doing it.

I am happy that a group of people, medical professionals, consider Cora to be healthy enough to be at home. But as with most experiences on this journey, my emotions are very mixed. The first one is my usual: utter frustration. Why do they need to discharge her three days before her cath procedure, just so that we can come all the way back and admit her again on Thursday? It seems completely asinine. We will voice our opinion that it makes far more sense to wait until after the cath, to see the numbers, before discharging her and taking our chances. But I have no idea if we'll get the final say. Likely not.

My second emotion: fear. Jason and I are by now very comfortable with tubes, cords, machines, and monitors. We won't have any trouble administering her medications correctly and on-time, or keeping her feeds going continuously. We know how to operate the oxygen concentrator. But as I'm sure I don't need to tell you, it's no fun. I had secretly hoped that we would be bringing home a Cora who didn't require any, or at least all, of these things. That we could be a tube-less, cord-less household. And on top of that there is always that lingering fear that she will get worse on our watch, and we'll be back to the hospital.

But then there is the third emotion: hope. The idea starts to creep in that soon, if not Monday, Cora might be living under the same roof with us. That she could finally occupy her co-sleeper that has patiently been waiting in a corner of our bedroom for the past five months for someone to live in it. Just like the shiny new swing Jason bought one powerless night in the ICU back in November; just like the ultra posh bouncy seat our close friends gave us the week before Cora arrived. They've all been vigilantly waiting to sleep, swing and bounce our baby -- and now it appears they are close to getting their chance.

It's complicated. As usual.

In the morning I'll surprise Dominic and Cosette on our way to the airport. They will be thrilled. So will I. But there is still a bit of heaviness that I'll unfortunately carry with me. The feeling that we should all five of us be there together. The worry about whether or not they will discharge Cora while I'm 500 miles away. The sadness about what Cora has already endured, about what our family has gone through, and the uncertainty of the path that lies in the years ahead.

That is a bit of luggage I always have. But I'm also packing a light saber and a Darth Vader costume, for a certain little someone obsessed with the beautiful world of make believe.

Community of Heroes

Cora got another new pair of slippers, if you can believe it.

By the way, it's hard to concentrate on writing at the moment because Cosette is currently trying to fall asleep, singing Katy Perry's "Firework." Her version -- "boom, boom, boom / even hotter than the moon, moon, moon." She cracks me up.

Anyway, Cora's surgery has been scheduled for Thursday. Apparently it is somewhat involved to coordinate the two teams -- cardiology and EP -- hence the wait. It's fine with me though. I'm still feeling good that we have a diagnostic plan.

Since Cora's broviac had to be pulled due to the line infection, she hasn't had a stable line and has been relying on IVs. She lost the last one last night and they weren't able to get a replacement, so she is off her IV lipids for the time being. We are hopeful that she can gain weight without them (just on her enteral feeds), but it's something that her team will watch carefully. If it turns out that she does need the lipids in order to consistently gain weight then we will need to make a plan for getting another line again. We'll see about that.

Another thing her doctors are watching is the amount of diuretics she requires to keep fluid off her lungs. Right now she's on three separate drugs several times per day. Over the next few days her team will wean some of the doses to see if she can come down a bit in her support requirements. It's somewhat undesirable to be on such high doses, mostly due to the risk of becoming dehydrated and wacking out your blood chemistry. That partial weaning process will begin tomorrow.

On my very first blog post I wrote about the community of heroes and of how we all need each other. That's what's on my mind tonight as I write this. For the past couple of days my dear friend from college has been visiting. Today her mom sat with Cora so that we could be together with Dom and Cosie and her two children. Then another friend came to relieve her of Cora duty, and two more friends are there with her now while I stay with the kids at the RMH. Tomorrow will be similar: six people will take shifts being with Cora since Jay is gone for a couple of days, and because it's hard for me to do more than stop on when I have the other kids. And Sunday when I leave for Disneyland and before Jay gets back, the same. I just can't believe how many people step forward at the smallest request. How many people have shown up for us, and who love Cora and our family through thick and thin. I used to think we would burn people out if this ordeal lasted more than a couple of days, but ironically, the longer it continues, the more people there are showing up. The more love we feel.

One of my favorite writers, Paulo Coelho, says, "Love is much like a dam: if you allow a tiny crack to form through which only a trickle of water can pass, that trickle will quickly bring down the whole structure, and soon no one will be able to control the force of the current."

I truly believe we are living in a flash flood with a community of heroes.

If you have called us, or emailed us, or texted us, or prayed for us, or thought of us, or sent us a card, or visited us, or if you're even so much as reading this, you are by de facto part of the water, and you're helping us get along.

Thank you, to say the least.

A plan for next week

I just met and chatted with a few families here at the Ronald McDonald House -- two of the children recently received liver transplants, and one, a heart transplant back in January. It was fun to talk to these kids, all of whom were teenagers, about their experiences. They were all of course wise beyond their years, and all certainly worthy of medals for incredible bravery and resilience.

Dom and Cosie were thrilled to make new friends with these kids and their siblings. They have seen so many children with tubes and cords and disabilities of all kinds, and they never seem phased by any of it. All they see are kids. Cosie went around hugging all of them and saying, "what's your name?", and then, "ooh, what a beautiful name!" after each one answered her. My hope is that the experience we're having here sticks with them throughout their lives and that they will innately be more compassionate and understanding of all the different types of people in this world, especially people who face disabilities. I really believe good can come of all this, and can grow into something beautiful.

It was great to be reunited with the kids after not seeing them since Sunday. They were so happy to see me and their huge hugs and laughter swelled my heart. Cosie said, "mommy, I'm so happy to see you! You lost me!" Ouch. If only this journey didn't involve so much pulling in so many directions.

It was a relatively good day at the hospital in Cora-land namely because we got what I wanted: a plan. Cora's team has decided to do a heart catheterization on her next week. This is a procedure which will be able to shed much more light on her heart function, because it examines the heart from the inside. At the same time that they measure different aspects of her function, the electrophysiology (EP) team will also do a study of the electrical system in Cora's heart. This is so they can learn more about her heart block and hopefully determine the best course to take moving forward.

As much as I don't like the idea of another surgical procedure for Cora, I do feel better knowing we have a plan and that soon we will know more.

In light of the cath next week we have delayed our move to UCSF. Although it could be done at either institution, it seems to be worthwhile to do it a Stanford, just in the unlikely event that something learned in the cath reopens the subject of transplant.

So after next week we will probably have a better idea of what's next for Cora and for us. For tonight, it's me and the kids at the RMH and all the joys of trying to get everyone to sleep at the same time in the same room. So far in the bedtime battle of kids versus mom, the kids are definitely winning.

P.S. Arguably the most important news of the day is that Cora received some new slippers to rival her bunnies. Photo documentation attached.

Suggestion Box

It was another frustrating day of waiting for something to happen. Again, there wasn't a bed available at UCSF so we are still here.

Cora's breathing was still very fast today, with a decent amount of sweating and throwing up. They increased her oxygen to see if that helped. It didn't seem to do much. She mostly slept and was only awake for little spurts. I guess I'd probably be tired too if I had to work so hard to breathe.

I've started to inquire about further tests or steps we could or should be taking if we end up waiting here at Stanford for very long. I'd just as soon keep investigating how to make Cora better instead of this relentless waiting. We'll see what they end up wanting to do, but at least the dialog has been started. I am an action-oriented, type A control freak. I don't like it when nothing is happening. To someone like me, waiting and not knowing are the most difficult emotions.

If there was a comment box here I would neatly pencil in, "Do something!" But there isn't.

Tonight I feel incredibly frustrated and over it. All of it! I just want to move ahead to the next phase. I want to figure out why Cora is still sick even though her heart is better. I want doctors to want to know this as much as I do. I want Cora to feel good. I want to take Cora outside, on a walk, or to the park. I want to live at home. With my entire family.

Blah.

On the bright side, when my mom was visiting today we let Cora be free with her bare buns for a while. She was so happy about it. There is probably nothing better than naked baby bums. They make any situation better.

Also I got a visit today from my very best friend from high school, who I hadn't seen in about four years. I'm so grateful for how Cora has reconnected me with so many people from my past. And now, one of my dearest friends who lives about 800 miles away has just arrived at the hospital for her third visit since this ordeal began. All these friendships and all this support, yet another gift from God, and from Cora, my little spiritual being who brings people together.

She doesn't get frustrated. Even now as I see her sleeping there, she is calm and happy. Never irritated or filled with angst. She doesn't want me to be those things either. She wants me to be in the now and stop trying to figure things out.

Ok Cora, I'm checking out of needing to know for now. I'll just go with my friend, chat a lot and probably cry a little, drink my coffee, and be grateful for the little miracle that is you.

Waiting...

C.V. Lionheart (as my Uncle Greg calls her), is still here at Stanford, stuck for what has seemed like forever. She has now been infection free for 72 hours, but she is still stuck because there aren't any available beds at UC. I don't like waiting. I like things to happen in my timeframe. They never do.

In the past few days Cora has been breathing faster, and throwing up and sweating a ton. I'm not sure that it means anything, but she seems, at least to me, to be having a harder time. When I ask about it, doctors say, "that's just her baseline -- just what she does."Ahhh. Not the most satisfying response.

She started off the morning happy and looking good, but she seemed to feel worse as the day went on. She didn't have any energy to do her full physical therapy session (but I did snag a photo.) She was working pretty hard, so her therapist decided to give her a break.

Cora's team increased the dose on one of her heart meds today, hoping that will boost her a little. She got her weekly echo today and it seems stable. The squeeze of her heart, which had previously been her primary problem, is continuing along its road to recovery. There are still several other issues with and questions about her heart, but hopefully there will be more to learn about these when we get to UCSF.

I took Cora for many laps around the third floor in her wagon this afternoon. She gets pretty intimidated by the bright natural light through the window. Her poor little eyes haven't seen much of it so she spends most of her wagon ride squinting and rubbing her eyes, with a look on her face like, "whoa...this is intense." It's pretty cute. Eventually she just took a nap and we parked near a sunny window. I met another mother and chatted with her for a while. It reminded me that although out in the real world stories like Cora's are very rare, here they are a dime a dozen.

Welcome to the one percent.

This is turning out to be a very boring update, I guess. Another day of waiting and wondering, living in a hospital room. Thank goodness for my family and their constant stream of funny texts and phone calls and visits, and for Jason, world's best partner to be stuck with indefinitely in the waiting room.