Three Little People

Today Cora was about the same from a medical standpoint but she seemed a little more content. It felt like a relief for me to talk to her and pet her and do all the normal baby things, instead of just consoling her all day.

This morning a couple of the nurses stood talking to me and just admiring Cora. They weren't discussing her problems; they were just there to love her. I felt so proud.

Nonetheless, we had some scary episodes today; the scariest one being something that happened this afternoon. The attending physician had ordered a CT scan of her lungs, which today were even worse than yesterday. The fluid on her lungs is actually a separate issue from the pulmonary hypertension, but together the problems have Cora really struggling. Because of how fragile she has been, the charge nurse who was arranging for transport had the good sense to have two nurses to accompany Cora down to the radiology room where the CT would be performed. I went too. As soon as we set Cora on the bed for the scan she just fell apart. Her oxygen saturations went very, very low and she turned a terrible color. Despite trying different things to help her, Cora stayed that way for the better part of ten or fifteen minutes. I wondered if we would end up calling a code. Once she came back a little she was whisked back upstairs and the CT scan was called off. It was no longer as important as just keeping Cora stable.

Anyway, after that drama Cora got an expedient upgrade to 7 East, the PCICU (pediatric cardiac ICU). She's spent much of her life there and it always feels a reassuring place to be, even though that may sound strange. It should be telling that when I walked in, one of the nurses who has worked there for over 25 years said, "welcome home," and I felt glad.

Overall Cora is stable tonight, and she's in very good hands. Back to having her own dedicated nurse to watch out for her and grab her should she try to fall off of any cliffs. Tomorrow she will go for her cath procedure, and that's when we hope to get many answers to the questions of the past several days. Right now there's just a general sense of the spooky unknown, and my desire to keep Cora happy and comfortable through everything.

I should mention that in addition to the spooky unknown, there is one lovely, tremendous little girl who spent today wearing her pink "Miracle" t-shirt, and who casted her peaceful little spell on everyone she encountered. There is also one very sensitive, very wise little boy, and his sidekick, a very loving, outspoken and spicy little meatball.

They each and all fill out the parts of me that were unfinished before they arrived.

Each of them is so much, and like all children they can suck the life out of you and put the life back in, all within a three minute period. But they're the only way I can get through this life. I see them as little bundles of grace, and they spill light over every place they go.

Knowing what you have

Cora is still struggling away. She was about the same today, which meant not that great, but I felt progressively more worried for some reason. There seems to be an intensity in the air or something.

Not helping mitigate that feeling was a conversation I had with the attending physician who came by to say that, while he is hopeful that the cath will reveal a cause for the pulmonary hypertension that would be reversible or helped by medication, we should be prepared the the possibility that this could all be "very bad." In my understanding, they are concerned about the rapid pace at which the condition has presented, and they just don't know that there will be an easy answer. 

There never seems to be one.

Tonight Cora has a fever for some unknown reason. It could be that it's due to her working hard to breathe (which I believe to be the case), but out of precaution they have to send the full viral and infectious panels. Hopefully it won't result in a delay of her cath.

But enough about Cora and our medical labyrinth.

A while ago I wrote about "Cora's pen pal," a beautiful little girl who was born on the day before Cora, and whose parents became our dear friends as we, side-by-side, navigated the cardiac world. These two girls were very linked. One would have surgery; the other would have surgery the next day. One would get some scary news; the other would get news shortly after. But there was one step they didn't follow: Cora got to leave the hospital, and this little girl never did.

Last Thursday she passed away, having fought a very brave fight until the day before her eight month birthday. And today I had the privilege of attending her funeral and of saying goodbye.

I can't craft many words about this, except to say that by watching her family over the past eight months, and today, we learned something of grace and dignity and acceptance. And that they have found a way to gratitude despite the most unfair of outcomes.

I never imagined I would live in this world where the day to day problems just fade away, and the problems of your life become the very serious ones. But there is such truth around it all, and so little time wasted worrying about whether or not one of my children has developed a bad habit, or about what someone (who I may not even like) thinks of me. 

We are living life in it's brutal and glorious technicolor. 

I was thinking of the expression, you don't know what you have until it's gone. How untrue for this little girl's family, and for us. We haven't missed many minutes of it all, and we very much know what we have.

Unhappy Day

Today was one of those harder days. We didn't get discharged, and now we know we won't be discharged before the cath.

Cora struggled, beginning in the early hours of the morning. When I called from home for an update, I could tell the mood was tense and it sounded like she'd kept the overnight staff running a bit. She was desaturating and was working hard to breathe. When I got there early this morning it was easy to see something was off.

They were still talking about possibly sending her home, but agreed to do an echo to make sure, even though her saturations weren't good, that she was otherwise stable. Well, the echo showed that she isn't doing as well as they had hoped. The pressures in the right side of her heart appear to be elevated, and she now has pulmonary hypertension, which in my understanding means that the pressure is very high in the vessels in her lungs. She also has an open hole in her heart, which we knew (two holes were already closed in her surgery back in November), but it appears now that she is shunting across that hole. In other words, oxygenated and unoxygenated blood is mixing through that hole, and that's giving her additional trouble. 

These things all together make a fairly serious problem. Just how serious remains to be seen, but it will certainly mean more medications and possibly more future procedures. If the pulmonary hypertension worsens, it will be a very bad thing. More than anything it means that her trajectory is heading in the wrong direction.

All day, Cora was uncomfortable, fussy, desaturating, and unhappy. It took the nurse and I both trying to help her to keep her somewhat calm. I didn't get any of those good, happy Cora moments.

I just called for an update and as of tonight she is now requiring triple her normal amount of oxygen just to remain stable. I can feel us slipping on the slippery slope that leads back to the ICU and back to the more difficult times.

Maybe she will turn and show improvement in the next couple of days. I pray she does.

In the meantime we have the cath scheduled for Wednesday, and now we need that information more than ever.

It feels like a hard night to go to sleep, here with our two children who very much need mommy, but away from our one who is struggling. But yet I have to go to sleep so I can go to work and go see Cora and do the business of life.

I wish I could clone myself. I wish none of them ever had to do without me.

Blerg.

I'm praying for happier times.

In the spiritual world

Cora is getting ready to go home, most likely tomorrow. I wish I could say she is much better, but she really is not. She has developed quite a cough as a result of her heart congestion, and I would say, just overall, she is quite a distance from her best.

The reason they are letting her go is because there really aren't any new actions they can take to help her until they take a closer look at her during the heart catheterization, which is scheduled for Wednesday. Our hope continues to be that they will gain some answers to why Cora continues to struggle, why her oxygen level so rapidly desaturates, why she has the persistent cough, why her liver continues to be enlarged, and other questions. Knowing we have that procedure on the books gives me great relief. I don't know why exactly, but I suppose because it is some action; some plan. And I like plans.

As usual, we've just been trying to live life simultaneous to our hospital odyssey. We took Dom and Cosie to the fair on the Fourth and they loved it. They are more and more becoming each other's best friend and I love to watch it unfold. At the fair their favorite part was riding a tandem motorcycle with Dom on the front, and Cosie on the back. They laughed and screamed as the thing went around and around, and they acted as though they were daringly cruising the open road, tackling each loop with fearlessness and determination.

They are absolutely stronger and happier together than they are apart.

While watching the fireworks, Dominic was on Jason's shoulders and Cosette was on mine. I looked up at one point and the kids were holding hands. Just staring at the spectacle, and absent-mindedly holding onto each other for no particular reason, except maybe that their lives are better when shared.

Cora Shabora turned eight months old today. It was also, as it turns out, her 200th day spent in a hospital. The cardiac ICU nurses, angels that they are, dropped off a cupcake to celebrate.

I'm telling you, I am learning from Cora everyday. I don't think she is a Buddha or some larger than life creature. But I do think she is a little person from the spiritual world, whatever that may mean. I think she speaks, soul to soul, to everyone she meets, and it feels strange at first, but somewhat addicting, to communicate only in a language of love, and free from the crap with which we fill most our lives. Fear. Loneliness. Worry. Regret. Stress. She is a magic little baby in whose presence, these things just float away. 

I do not pretend to know why Cora drew the short straw when bodies were made and handed out. But I know that to see her life only in terms of the struggles she has faced would be to greatly miss the point.

In the spiritual world, Cora's world, I don't have to think in terms of what her life should be; I don't have to feel we were somehow robbed of a better, easier experience. I can simply believe that things are exactly as they should be. That it is only my limited pictures of what I think "okay" looks like, and my tendency toward fear, that make this experience seem, well, awful. 

There are awful aspects, of course. It's just that it's more than that. 

I never before experienced the volume of beauty that's surrounded me during the past eight months.

In so many ways, lucky

My thinking isn't quite right.

Having just put Dominic and Cosette to bed, I was considering what I should do next. I thought about writing a blog post, but then I thought, no, I'll go for a run. That sounds so great! So I went to get ready, only I remembered after a minute that Jay isn't home, and last I checked, it wasn't too cool to leave your house with two children in it. I thought for a minute about the fact that they are likely down for the night. Would it be okay in that instance? But some small shred of logic kicked in and I decided that, leaving children -- sleeping or not -- is an activity that is generally frowned upon. So no run tonight.

Let's just say, I know I have lost some neurons and synapses through this ordeal.

It was a hard day for Cora. Today, even more of her electrolytes were depleted. That meant no real progress on drying out her lungs, because the focus continues to be on electrolyte replacement. Her breathing was very labored today, and she was grumpy. Then she spiked a fever, which is never a good thing, but especially not in a hospital setting and not when you already have so many complicating factors in play. Because of the fever they sent blood cultures to make sure she doesn't have an infection brewing. Yesterday they also sent panels which will show if Cora has a respiratory virus. My gut is that she doesn't have a bug, but of course my gut is not the deciding factor.

We'll see. A sickness right now would be a setback. It will be 48 or 72 hours until we have any definitive results from those tests. So in the meantime we just wait to see which way she is turning.

Today was another day of the juggling master class for me. I left the hospital late last night, came home and slept for a few hours, went to work, went to see Cora, then came home at dinner time because Jay needed to leave for an appointment. Luckily, even though I was only able to spend a couple of hours with Cora, she had a very full social calendar of friends and family who came to entertain her (one of whom is still there as I write this.)

If I haven't mentioned this lately, we are so very grateful for our extraordinary network of friends and family who are always there for us, and who seemingly never reach the bottom of selflessness.

I've been reflecting on how, in so many ways, Cora is the luckiest little girl on earth. If she would have been born a healthy child, she would have been just ours -- mine and Jason's. People would have admired her, and they would have loved her. But they wouldn't have known her any more than we know the true heart and soul of any of our friends' children.

But because she was born with these unique challenges, we have had to share her. Because I've tried to share her soul and her character, people have loved her. And because there have been complexities, I've kept writing about her. Because the logistics of our life have been so challenging, I've had to ask for help. And with every complicated turn in the road, more people come into her life and into her story. And each of those people give love that fuels her, and each person who adores her pushes her forward.

And though I get the extreme privilege of being Cora's mom, I feel like she is a lucky little girl who belongs to a thousand people.

A Tuesday

I'm just hanging here at the hospital with little Shebs, who is currently completely passed out on my lap. 

Today was, I guess you could say, a pretty decent day. I got a good night's sleep last night and went to work this morning. Jason got the kids up and ready and then went to work himself, and Cora stayed solo at the hospital until I could head over after work. 

Even though I hate to accept her being here during the day without one of us, I have to admit it's never really like she's alone -- she has all of her nurse friends and fans here. I ran into at least three nurses who we've become close with through our ordeal (none of whom were actually assigned as her nurse today) who said some variation of, "I stopped in to play with Cora today," or, "I was cuddling Cora today!" With those beautiful eyes and those delicious chubs, she's quite the little celebrity around here.

The plan when we arrived was to aggressively work to get fluid off Cora's lungs, which basically meant putting her on IV medications. However when her initial lab work came back it showed that her electrolytes were low. Therefore the plan has been placed on hold while they replace her electrolytes. Hopefully within the next day or so the electrolytes will get back to normal and then we can go back to working on the lungs.  After getting the lungs situated the next step will be the cath, which will most likely be early next week. Cora never being one to offer a straightforward picture, I'm doubtful that it will yield some silver bullet problem that could be easily solved. But still I am hopeful that it will at least provide more understanding than we have today.

In the meantime Cora is on additional oxygen and still breathing hard. She seems bummed about it all.

Meanwhile Jason, Grammie and Papa and took Dominic and Cosette out to dinner and to see Monsters University. The thought of them sitting there eating popcorn and M&Ms makes me happy. 

Oh, and Cora is currently wearing pink and white striped, very fashionable little bloomers. And that makes me happy too.

God, on the fly

Blaaahhhhh......

Cora is back in the hospital tonight. I knew it. I am getting good at predicting these things, if nothing else.

It was clear that she was struggling this week. She seemed to get progressively worse with each day -- and even more so in the nights. She had a few times of reprieve but overall she wasn't happy this week.

The nights have been out of control. Usually beginning at 11 or 12 she starts coughing, gagging, crying, and thrashing around. She has started breathing harder and faster, and even I, a person with no medical training (but who arguably could apply for an honorary degree in nursing) could tell that her liver was more enlarged than it had ever been.

Jason took her in to see her primary cardiologist at UCSF this afternoon and he confirmed what we both knew. That Cora is yet again (or still, depending on how you look at it) struggling. For whatever reason, despite the last few hospital interventions, she hasn't been able to change her trajectory. Over time, she's just getting worse.

So this time they will give her some IV medications which are much more effective than the oral ones at home. They will also keep her in the hospital until they can do the heart catheterization. Hopefully that will reveal the reason for Cora's continued difficulties. At this point her problems most likely are either attributable to her chronic lung disease, or they are a result of an open hole that Cora still has in her heart. I'm just hoping to get to the bottom of the cause, because I'm a type A, and life always feels better when there is a plan.

As sad as I am that she is not under this roof tonight. I can accept it. Really, the only thing worse than her being in the hospital is her struggling or suffering. And I felt that she was both struggling and suffering the past few nights. Especially last night when nothing I did could help her breathe easier or rest at all, and when finally at 2:30am Jason capably took over and told me to go sleep on the couch for an hour before I had to get up for work.

We are both dead tired, and I guess you could say that god intervened.

Speaking of god, Dominic asked me tonight, "what is god?" I am a spiritual person and I do pray, but I've never been much of a public pray-er and I'm not very good at knowing when the right time is to tell your kids things. I'm sure I'm supposed to be actively teaching them things (what though? Reading? Greek mythology?) It's just too hard to know how to be a professional parent, so I figure my kids will just pick things up when the time is right. Keep it mellow. That's my motto for life, as well as for parenting.

Anyway, Dom asked about god tonight. As a slacker parent, I had not prepared an answer to this question. (And by the way, how the heck am I supposed to know anyway?) On the fly, I told him god is a loving thing in the air around us, all the time, that does nothing but protect us and care for us and squeeze us, wherever we are, all the time. That that same power is loving and protecting daddy and Cora, even though they're at the hospital tonight. Just like it's loving us here in our house.

"Oh," Dom said. "But why does the squeezing not hurt us?"

I explained that it was good squeezing. A very wonderful feeling. "You know when something really happy happens, and you feel so good that your heart feels very big? That's god."

"Like when we're all together?"

"Yep. Yes. That's it."

And the other thing that feels like god is Cora swimming. I don't know what it is about it, but when she doesn't feel well and when I don't feel well, I take her in the pool. I swear, she floats her pain away.

Yesterday we had the good sense to take Cora in the pool. And both seeing her, content in the water, and having had the good sense to take her swimming the day before another hospital stay, both feel like a bit of god's grace.

The memory is a happy thing that's keeping me going today.