We're Together Again

Cora is home!

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

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

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

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

Special People

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

For now we are a bit stuck here.

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

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

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

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

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

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

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

A secret message for R2

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

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

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

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

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

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

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

Baby Lottery

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

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

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

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

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

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

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

A (hopefully) short trip back to UCSF

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

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

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

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

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

Baby in a Blanket

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

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

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

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

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

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

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

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

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

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

And I am very, very grateful.

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

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

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

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

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

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

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

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

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

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