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.

 

Moving Concrete

Today feels a little lighter, but the past few days have been heavy. I've felt like I was slogging.

Though when we returned home from the hospital I was optimistic that Cora was much improved, it sort of faded within the first day. Her cough is definitely better but the throwing up is unfortunately still very much with us, and we spend a good amount of our time with her, soothing her when she's sick, suctioning, and trying to make her feel better.

It takes a little bit out of me each time -- just to see her uncomfortable and suffering through yet another episode, and to know that despite countless changes of formula, feeding rates, feeding methods, and consultations, there really isn't anything I can do to make it better. To feel this hopeless reality that my sweet little girl has truly never had a single day in her life that was free from pain, or discomfort, or some form of struggle. Well, it sinks me.

And after a few consecutive sleepless nights due to the aforementioned episodes, I was feeling pretty sunk as of yesterday morning. But it was time to slog to yet another doctor appointment. This time we were seeing an otolaryngology specialist because there had been some question about Cora's hearing. To be honest, Jason and I had more or less blown it off. When Dominic was a baby he failed the newborn hearing screens and a couple of subsequent tests before he ultimately passed with flying colors. So I was somewhat blown away as this specialist, someone I had never before met, informed me that Cora has, without question, "severe" hearing loss.

She discussed it as thought it was a diaper rash or an infected toenail, and as she talked, my heart sunk deeper and deeper until I'm pretty sure it landed in my foot. It sunk to the lowest point.

It's not that I think you cannot have a good quality of life if you have hearing loss, even if you can't hear at all. It's that I just feel, combined with everything Cora has endured, it's too much.

I feel as if someone, literally, has asked me to help them carry a very heavy load. It's as though he has a large pile of concrete he'd like me to help him with. So, in a very good mood, I walk over to the concrete pile and he hands me a block. And even though it's heavy, it's okay, because after all, I'm happy to carry it, because someone needs to, and because that's life.

But then after I walk away a few hundred meters, he calls to me that there is one more block that needs to be carried. I sigh and turn around, and he loads me up with another block. This time, although I'm still optimistic, I have to admit my arms hurt. But I know I can do it, and I keep on. But of course (and you see where this is going), he just keeps calling me back and loading me with more blocks. And despite it all I want to say, I'm still standing and, I can carry another one, to be honest, I feel more like saying, I have too many blocks now and I want it to be someone else's turn.

So that's my analogy, but it doesn't change that fact that this is what's on our plate, like it or not. And the longer it goes on, the road is ever more complicated rather than becoming more clear. And it is my very large, very continuous spiritual challenge to accept it, and to not just tolerate it, but to fold it into my life -- a life that still needs joy and laughter and contentment despite whatever blocks are handed out.

So I am learning, always learning, to live by this question: can I just do this one thing? There is no way I can face the uncertainty of Cora's complicated heart condition. No way I can live with not knowing if she will ever eat her food by mouth, or if she will ever speak the relentless three year old mantra of, mama! mama! mama!, or if she'll run around, or if she'll spend more months in the hospital, face more surgeries, or if my heart will break more than it already has. I know with certainty there is no way I can face those things. I really do not know how to approach those overwhelmingly big and spooky beasts.

But I can do just this one thing, whatever that next thing may be. I can put in a load of laundry. I can suction Cora when she's struggling. I can carry her feeding pump and her oxygen tank in a backpack, and her in Baby Bjorn and I can walk her to the park. I can unload groceries. I can get the kids dressed. I can hug them all. I can take a shower. I can go to work.

I can even be happy, really happy, quite a lot of the time. Not so much yesterday. But overall, I can. And I don't get too down on myself for those days when I really, really do not feel like living this very big spiritual lesson.

I think if I was grateful and happy every day through this, that would just make me weird.

Reunited

Cora busted out of the hospital today! There was some debate over whether or not they'd like to do the heart catheterization procedure, but in the end the team agreed the emphasis should be on weight gain over anything else. And because Cora has gained weight for the last four days, they decided to postpone doing a cath for a few weeks and just let her go home.

I have to say that the recent changes they made to Cora's medications have really helped. She seems to be on par with the best we've ever seen her, and I'm hoping she only improves further by being at home. Now that the meds are straight, we can heal her with happiness.

I slept at the hospital last night so I could spend some quality time with Cora before going to work at the very bright and early hour of 6am. Jason came to the hospital and got the good news about the discharge. He was able to wrap everything up and get Cora to the car, then they both picked me up from my first day back at the office.

We are getting good at getting discharged, and Jason was able to take care of everything single handedly, like a pro. Not surprising -- he is more Mom than Dad in the capability department.

So tonight everything is very plainly normal. I made some work calls while the kids ran crazy. We ate dinner together in our very own kitchen, Cora in her little seat, taking it all in. Then I let Cora float in the bath with Cosie, and Cosie helped me wash Cora's hair by carefully pouring her little pitcher of water on her head. We read books on the bed. We tucked everyone in.

I almost forgot to mention one very priceless moment during dinner preparation when Cora projectile vomited while Cosie peed all over the kitchen floor.( This scene, of course, is I'm sure being replicated in countless normal American households tonight.)

Currently Jay is on the phone having the world's most frustrating conversation with the bank who holds our mortgage about some exorbitant fees they've decided to charge for no particular reason, seemingly, except to finish the job of driving us insane.

Life goes on.

And how wonderful that it does, and that it has so generously allowed us to keep our sweet Cora with us. We have seen many heartbreaks. Our own, and so many others'. Compared to many, we have fared very well.

Tomorrow we start our in-home nursing. I'm hopeful this officially marks Phase Two: Cora's spectacular childhood of growth, rehabilitation and ridiculously beautiful times.

Waiting to gain weight, and baby kisses

Today I had such a sweet moment with Cora. I was getting ready to leave her and I put my head in close to give her a kiss on the chest. She's not strong enough yet to grab anything with an incredible amount of force, but she is getting better at lifting her arms and reaching for what she wants. So when I went in for the chest kiss, she lightly grabbed onto the sides of my face and put her mouth on my cheek.

Most babies go through the "eat everyone's face" stage, but Cora is not a typical baby, she doesn't explore the world by eating her way through it, and she doesn't usually want anything near her mouth that isn't a binky. But today she had my cheek there, and in her gentle way, she just kind of popped her lips on it like a quiet little kiss. With my ear next to her mouth I could hear her tiny breath over the hum of her oxygen, while her soft sweet baby fingers kind of tapped on my cheeks.

It was pretty special.

They are keeping her there at UC for at least the very near future so as to keep a very close watch on her ins and outs, and to try to get her to gain some consistent weight. She has gained a very small amount over the last few days, so the team is happy. With Cora's "challenged" heart, she is always in some degree of heart failure, the effects of which are managed with her various medications. The goal of her doctors is to manage her failure symptoms as optimally as possible, while simultaneously getting enough calories in her to ensure her growth.

At least that's the plan for now.

It sounds like sometime in the not too distant future they will also want to do another heart catheterization to better understand her persistent need for oxygen and her chronic lung disease. They also want to examine the functions of the heart that her echocardiogram doesn't fully explain. It's possible there is something going on with her heart or lungs which is making it difficult to gain weight. Basically, they would do it in attempt to get answers to some of the questions which, so far, have been unanswerable.

Her primary cardiologist suggested doing the cath procedure this week, but the rest of the team feels that the primary focus should be on weight gain. And any time there is a surgical procedure there is a day of no food, and at least a day of only moderate eating afterward. So we will see, but there is probably a strong argument for waiting on the cath for a couple of weeks to see if she can grow.

Jason took Dominic and Cosette to the beach today, while I hung with Cora. Our parallel lives continued for another day. But tonight we met with some friends for dinner while another friend of mine stayed at the hospital.

As much as I enjoy the luxury of the four of us being together, I always feel that something is missing, which of course it is. That little soul full of light. Our little baby glue who silently pieces us all together. Without her here, no matter how happy I feel in any moment, there is stress three inches beneath the surface. My fuse is short. I do my best; we all do. But the more tastes I've had of us all being together, the more bitter it is to be apart.

Being Happy

We're still here, back in our very familiar room at UCSF. Not a great deal has changed, although Cora's lungs have responded well to the increased dose of diuretic and she is more or less back to her baseline. However, it doesn't seem like we are going anywhere too soon. 

The biggest concern, bigger than her lung difficulties or her enlarged liver, is her failure to gain weight. Most people see pictures and comment on Cora's chubs. She has them! But despite the appearance of those munchie little thighs, she actually hasn't gained any weight since late March. So while Cora is inpatient now they are running tests to try to get to the bottom of this issue. Today she had a caloric study wherein they basically put a large plastic bubble over her head that measures the amount of oxygen she requires and somehow extrapolates from that exactly how many calories Cora burns over a period of time. (Science is crazy!)

Depending on what these tests reveal, there may be actions to take during this hospitalization. One possibility I have mentioned before is her getting a line for the long term administration of IV nutrients. We will just have to wait and see about everything, as usual. In the meantime we can plan on at least a few more days of information gathering.

Of course we are growing tired of the revolving door on this hospital. We had gotten into a rhythm during these past couple of weeks where we were figuring out how to do this, no matter how hard, and we were enjoying the luxury of all being together under the same roof. This has thrown a wrench into that (again) and it is a bitter reminder that it's probably just going to be like this for a while.

Monday I will go back to work for real. I keep trying to plan my return when things are settled and normal but my very pragmatic husband reminds me that now is just as good a time as any. Normal and settled are not forecasted for us any time soon. So I will go back, and we'll just take each thing as it comes and figure out how to do it when the situation presents. It will all work out, I know.

This morning Jason was at the hospital, Dominic was at preschool, and Cosette and I went to the farmer's market. Watching Cosie's wild pigtails as she jumped, carefree and completely delighted, in the bounce house, was enough to erase most of my problems. 

Moments like that make me so happy. 

All I want is to erase all the pain and worry from all three of them: Dominic, Cosette and Cora alike. And with my extra super powers I'd erase it from Jason too. All my life, I've lived to be happy. Messy, sad, unsolvable situations are my kryptonite. But yet here this situation is, in my lap, and there's really not a single thing I can do about it, except to accept life, exactly as it is, in each moment. And still strive to find the hidden happy in everything. Suck up the low points, no matter how undesirable. Spend less time dreaming about the tasty piece of cake I should have been handed. Live for the bounce houses, the thirty-seven thumbs-ups Dom gave me during today's swim lesson, the zoo, the pool time Cora floats, the pure love that has risen to the top of a murky situation and refuses to be ignored.

Hospital Chronicles: Part Seventeen Thousand and One

I was feeling happy when I woke up this morning. It was going to be a good day. Dominic was starting swim lessons and I was going to pick him up early from school to take him there. Then, best of all, one of our nurse friends from UCSF was going to come to our house and babysit Cora tonight, and Dom and Cosie were going to Grammie and Papa's house so that Jason and I could actually get a date night. It was all very exciting.

But before any of those fun things happened, I needed to take Cora to another doctor appointment at UCSF. Today we were again seeing the gastrointestinal specialist to try and solve the seemingly unsolvable riddle of why Cora can't tolerate food and can't gain any weight at all. The doctor put us on a new enteral formula which is supposed to be very basic and easy to digest. However toward the end of the appointment when she was examining Cora, she noticed that Cora's liver was very enlarged. She also noticed that she was breathing fast and breathing harder than she had been during our last visit. These observations prompted her to send us across the hallway to our cardiologist for an evaluation.

I'm sure you know where the story ends.

Yes, we were admitted today back to our home away from home, UCSF, back to the same room we discharged from and have spent so many nights in.

Although I have more or less accepted it now, I can tell you that I spent the better part of today being very annoyed. I think the most frustrating part was not being able to take Dominic to his swim lesson. I don't know why it felt like such a let down, but I think it was because I had looked forward to doing something very normal, something just for Dominic, for a long time. This morning when I dropped him off at school my last words to him had been, "I'm excited to pick you up early and take you to your swim lesson. If I have time, I will even bring Cora into meet your friends at school." And then I had to stand him up, and not do either of those things, and even though Jason was able to take him to the swim lesson it felt incredibly sad to me to watch the hour of the lesson tick by, as I sat in a cardiologist's office, knowing that we were going back to the hospital.

I really hate not to be able to follow through on promises or to just create the type of experience for my kids that I would like them to have. I don't want to be a flaky mom. I know that I'm not a flaky mom. But as usual I have so painfully little control over the things I'd like to.

I think the larger issue is the overall disappointment that we have been just settling into normal life at home, and then things got swooped out from under me when I wasn't expecting it at all. Unlike the last time we were admitted, I was just going to a routine appointment. I didn't have the slightest clue that when I went to that appointment this morning I wouldn't be able to go home. It's like I got hijacked.

So in any event, the short-term plan for this hospital stay will be to increase Cora's diuretics to see if that will help her lungs. (You might recall we did the exact same thing on her last hospital stay.) But this time I am also hoping that we might be able to get to the bottom of a couple of these issues that have brought us back again. I'm hoping we will consult with a pulmonary team since many of Cora's issues seem to center around her lungs. It sounds like we will also possibly take some steps forward with the G.I. specialist that we have been seeing. There has been talk about a g-tube, which is basically a point of access directly into the stomach for feeding. There has also been talk about the need for Cora to have continuous intravenous nutrition. We might work on that during this visit as well.

So here we are again closing out another day of hospital life. It's hard for me to believe, but then at the same time not that hard. I know this could just be a couple of days and then we could be home. But it also could be longer and I know that too. It seems to be much more difficult to get out of the hospital then to get admitted.

I'm tired.

I don't have any pictures from today so instead I will attach some from the last few days in our wonderful, very blessed, almost close to normal life.