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.