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. 

Living life to the very fullest

It's been a while since I've written a post. As much as I love writing this blog, the reality is that by the time I get everything done for the day and finally get the kids down, I usually have about seven minutes with which I can sit on the couch and actually do nothing (if you count eating ice cream as doing nothing.) I've been taking advantage of that and trying to just relax and know that I'll do the blog when things calm down a little, which they seem to have. Well, I don't know if they've actually calmed down at all but we are getting a little more used to this new life with every passing day, and we have managed to squeeze some normalcy into it.

In fact, we've spent the last several days trying to just be as normal as possible. We've gone to the farmer's market (twice,) gone swimming, spent time with our friends, walked around the block several times, and I've even taken Cora to Target (the epitome of normal for any mom.) These things have been mixed in with the reality of our new life: medications seemingly administered nonstop, daily doctor appointments, and 20 to 30 phone calls every single day to manage some aspect of Cora's care. It really is something. There are calls to the insurance company, calls to the medical equipment providers, calls to the regional center which will help Cora progress with physical and occupational therapies, calls to pharmacies, calls to physicians, calls to case managers, and so many, many other calls. I am drowning in calls.

Yesterday we had our appointment with the gastrointestinal specialist at UCSF in an effort to figure out why Cora has such issues tolerating her food. The physician didn't have a lot of information to share at the time; it was mostly for her to learn about Cora and determine which tests would be helpful to run. She did add another medication which brings our grand total up to, I believe, 13 medications. It is somewhat overwhelming. After the appointment we did the first test, which was a series of x-rays taken with the use of fluoroscopy. This was intended to show if there are any abnormalities in Cora's GI tract. Monday we will go back for another test, and we will see the specialist again in about two weeks.

Other than the incessant medical appointments, one of the main things I've been working on is securing home nursing care for Cora, which would allow me to go back to work in a more full-time way. It has been quite a logistic adventure, and I've learned more about the insurance and medical systems than I ever would have wanted to know. Still, I am making my way through these mazes and we are getting closer to securing shift nursing. It will be such a relief to know that Cora is being well cared for when I go back to work. This has been a great example of trusting the process, and knowing that things will unfold in the way that they should. I can remember spending so many days in the hospital wondering how I would ever be able to go back to work, worrying about who would care for Cora, and about how we would get by if I never was able to leave her. But then one day a few weeks ago, our insurance case manager actually called me to tell me that this service was available to us. We feel so incredibly fortunate to have a solution to all those questions that used to keep me awake at night. (I still stay awake, but I'm worrying about new issues!) If all goes well I will be returning to work in a little over a week. While it feels strange to think of leaving Cora, it also feels somewhat good to think of returning to life as usual and pursuing our effort to make this life the new normal.

But back to the now, and the bright side of everything. The past few days have held some of the happiest moments that we've had as a family in the last seven months. The best part by far was last weekend when we were at Grammie and Papa's house. We had gone up there to go swimming with some of our friends. Dominic and Cosette spent the majority of the day in the water jumping off the side of the pool and showing off their skills as little fishes. But Cora was having a hard day. She was fussy and throwing up a lot, and overall just not happy. Finally it occurred to me that she might just be hot. Or maybe she was bored. I decided to get in on the top step of the pool and hold her on my lap, letting her hands and feet dangle into the cool water. She instantly stopped fussing and I could tell she was happier right away. After ten or so minutes of that I decided we should take it one step further and let her try floating in the pool. Jason held her head and I held her cords and tubes, and she just floated there. She was literally as happy as I've ever seen her. There was a look in her eyes that said she was content and peaceful, and she seemed in her body to be more physically comfortable than she had probably ever been in her life.

I think it's safe to say without a doubt that it was the happiest moment of her life up until that point. Watching her there in the pool kicking her legs, making little snow angels with her arms through the water made my heart so big. It was one of those perfect moments. I felt in that moment that we are doing it right.

And that continues to be what we are going for -- to do things as right as we possibly can, without letting worry shadow our every move. Cora's health is still very poor and she hasn't gained any weight in the last two and a half months. If we know anything about her, it is that she is very unpredictable, very weak, and that her future is always uncertain. We believe her heart and her spirit are strong, that she absolutely wants to be here, and that she is a little girl full of light and hope, destined to surprise people. But we are also realists, and from where we are sitting we can see very little of the road Cora's future will take us down. So we believe the only thing we can do is try to help her live life to the very fullest. All women from age 28-80 will recall the line delivered by Julia Roberts in the movie Steel Magnolias, "I would rather have thirty minutes of wonderful than a lifetime of nothing special." To me, this is a guiding principle, and I refuse to keep Cora in a glass box or to deny her any of the experiences that this wonderful life has to offer.

Most mornings Cora wakes up coughing and throwing up, starting at about 5am. But yesterday morning she had a reprieve and she was sleeping peacefully past when Dominic and Cosette woke up. They both perched up on our bed, with their heads on their hands, leaning over the side of the co-sleeper where Cora sleeps. They were whispering about how cute she is. After a few minutes, ever so quietly, she opened her eyes. There, the very first thing she saw, was her loving brother and sister about six inches away, just staring at her. The very first thing she saw was love.

On all those hospital mornings, it wasn't possible and the first thing she saw was a monitor, or the side of a crib, or maybe just the ceiling. But yesterday, the first thing she got to see was love. And I got to watch it. And I felt like, I won.

Little Miss Complicated

This weekend, in our quest to resume some kind of normal life, we spent time together at our families' houses and enjoyed the warm weather and the joy of all being together. While we swam with Dominic and Cosie we took turns holding Cora or hanging with her poolside. It felt so good to not have to run off or to call the hospital five times a day. Just to all be together and to look around and say, here, here is my whole family.

There have been many happy moments in the past few days -- moments that have felt easy and very dear. But there have also been many moments that have felt horrifying, scary, and very dark. We have been adjusting to the reality that we unfortunately have a very sick, very complicated child.

(This child is also very adorable, very sweet and beautiful, it should be noted.)

But she really does have many, many issues, and although she is home it's becoming clear that we are not on an straight upward trajectory, and we really know so little about what the future holds for Cora or for us. Each day since we've been home Cora has had several episodes of coughing, turning blue, choking, and vomiting. Sometimes one of those things and sometimes all of them at once. She has episodes when her oxygen levels drop dangerously low and we beat on her chest and wait for her to recover. These episodes happen all day long, and I wake up to them in the night, multiple times, every night. We're getting stronger, and we're getting better at believing that whatever episode is happening will eventually pass, but it does take it's toll. Jason and I are both fairly emotionally exhausted, and as you know, emotional exhaustion might as well just take a number and stand in line behind the twenty or so other kinds of exhausted we are.

But right now we're living for the other kind of moments. The beautiful ones. The way Dom and Cosie run over to Cora and lay down right next to her, and love on her. The moments when Cora will start having an episode and Cosie will turn to me and in her concerned voice say, "she's coughing mama," or in the car how, from the back seat, Dom will say, "she's okay mama." The peaceful moments of holding Cora in my arms and feeling that, more than the weight of our heavy life, it's just the weight of my beautiful baby on my chest, very much as it should be.

Today we went to a nearly five hour long cardiology appointment. There were tests and conversations that kept leading to one more test and one more conversation. Cora's heart function still looks pretty decent but they are concerned with her inability to gain weight, to shake this respiratory virus (which she's now had for six weeks), and with how much vomiting and choking she's doing. We now have an appointment with UC's gastrointestinal team for more tests and to see if there is some reasonable explanation for these issues. We also had some blood work done today to rule out other problems that might be contributing.

Complicated! That's the million dollar word. We've been hearing that as a descriptor of Cora for the last seven months. It's the reason for everything. What can anyone say? She's complicated. Little Miss Complicated.

It's easy to get far ahead of myself these days. I just want to look into the tea leaves and read how it all ends. As if that would make living with any of it easier. Between Cora's episodes, her kajillion medications given at a kajillion different times of day, her continuous feeds, her need for suctioning, her desaturating, her oxygen equipment, and then the constant needs of our other two, I've had moments of feeling like, I really cannot do this. That the life I imagined for myself and for us, with our happy family of five, was not anything like this reality. All the pictures I had have been torn up, and there are new pictures, yes, but I'm not used to them yet, and I rather like my old pictures anyway. But there's only so far you can go down that dark and scary road of fearing the cards you were dealt. After a few minutes, you have to come back to the now and acknowledge all the good that is gluing your skittish feet to the ground.

So when I'm done having my little pity party, I dust myself off, slap myself across the face (figuratively speaking), and move on. Because there is simply always the next right thing that needs to be done, and anyway, Jason doesn't like whiners.

I can be all consumed with my fears, and I can sit down on the ground and cry and stomp all I want, because, god dang it, I didn't get my way. But I know enough to know that I will miss the beauty of things if I sit on the ground with my eyes shut. I've got to be available for the possibility that these pictures will be better than the ones I brought with me. I'm pretty sure that's what's going to happen.