Make it Work

Jason's Italian mother and his aunties put out the most incredible spread for every holiday, and today was no exception. There is always enough food for at least three times the number of people in attendance (which today was just over 40.) We had such a great day over there eating, talking, hunting for eggs, and enjoying our family and friends. As usual, I was reminded how hugely I scored in the family department -- both mine and Jason's are 100% grade A, top notch, amazing people we feel blessed to be around.

Yesterday Dom asked me why we hadn't made a list for the Easter Bunny. "It doesn't work like that, buddy," I explained. "It's not like Santa Claus. You get what you get." He was visibly disappointed. But then this morning when he found his Easter basket, which contained a rather large talking and moving Buzz Lightyear, he squealed in delight, "But Mama! I didn't have to get what I got! I got just what I wanted!" An awesome moment where I felt that as I parent, I had truly nailed it.

Two of our friends came to spend Easter with Cora while we were in Novato. As usual, she cast her serene spell on them and dazzled them with her deep wise soul and her many chubs. When we walked in, Cora was kicking around and gave me a huge, "Mama!," smile. God, she warms my heart.

Jason and I both came back to be with Cora tonight in hopes that tomorrow will be move day. Yesterday's blood culture is holding solidly negative after 36 hours. Fingers crossed, if today's comes back negative as well, we could be on our way. I think we are both anxious to move to UC and get on with some more investigating into exactly what's going on with Cora, as well as just be closer to home.

I just looked over and Jason appears to literally be sleeping leaning over Cora's crib. This is such a tiring lifestyle. In the journey of parenting, they really don't discuss how to manage your life when one of your three children lives 60 miles away. We are a working exercise in trying our best to make things work in the midst of chaos. Most of the time it feels like an episode of Top Chef where they ask you to make a gourmet meal using only 4 ingredients, one of which is anchovy paste. It is truly a "make it work" era for us.

Because at the same time that we could get a pass if we wanted one -- on things like Easter egg decorating or normal holiday celebrations, I don't want one. Like it or not, this is our life. And I don't really see it changing in the near future, so I don't want to look back on this time like the "lost era." When I look around, I see that our kids are growing up. Things are happening: Cosette is learning more and more words and expressions everyday; Dom is learning letters and sounds and the building blocks of spelling and reading. As my mom always reminds us, "life goes on." So we just have to find a way to incorporate all this into our lives. To see this as just being a part of life, no matter how undesirable a part, just a part of the whole big glorious bundle.

That's why I've decided to take Dom and Cosie to Disneyland next week. Yup. I really have. Jason encouraged me to take a couple of days away and just do something purely fun with the kids. I resisted at first, but then I remembered that life is going on. I will miss my little chubbalub, but Jason can stay with Cora and it really will be okay. It seems like a pretty beautiful idea to give these little ones, who have already shouldered a giant emotional load, something really, really fun with their mama. And I need that from them too.

Happiest place on earth, here we come.

Family

Today was a very happy-sad day. Because our family lives in two universes -- the one in San Rafael, and the one in Palo Alto -- we usually have at least two different kinds of days. For me in San Rafael, it was a great day. For Jason and for Cora, a not-so-great day.

I woke up this morning and walked downtown with Dominic and Cosette. In our prior life, we started almost every weekend day with a walk downtown as a family, we got coffee and let the kids run around and play. Doing that routine with the kids this morning made me so happy, but it also made me sad, again not being able to rid myself of the pictures I had of how the five of us were supposed to do these things together. Still it was so wonderful to chase Dom and Cosie through the park and to hear their ringing laughs as I raced them down the sidewalks in their double stroller.

Meanwhile at the hospital Jason was informed that all of Cora's blood cultures, even the one that was previously negative, are now positive. This means that her infection is not yet responding to the antibiotics, and it's very worrisome. The doctors decided they needed to remove her broviac since this line is the source of the infection. It's always so hard to get IV access on Cora, especially stable access, and that's the line she went to the cath lab to get. But there's no doubt it needed to come out, even though I was hoping not. So they removed it, which was pretty painful for Cora, and I'm sure hard for Jason to watch. Afterward they were able to get an IV in her after just a few tries. We'll see how long it will last.

The news about the cultures further delays our move back to UC. Stanford will need to see 48 hours of negative results in order to clear us for transport, so hopefully we'll get lucky and tomorrow's results will get us headed on the right path. We had hoped for a transport on Monday, but now I'd say that's a long shot.

The rest of our day here in Marin was truly wonderful. I took Dominic to one of his best friend's birthday parties and watched him run around, carefree. This evening I went to dinner with some of my dear friends and laughed a lot. I needed that. Carolyn watched Dom and Cosie at her house, and I loved hearing her stories afterward of how sweet and fun the two of them were together. They picked carrots in the yard, fed the fish, went in the hot tub, and whispered stories to each other as they were falling asleep. When I picked them up I carried them, snoozing, through the rain and into the car to head for home. Looking in the rearview mirror I could see them back there with their heads rested on each other. They are so amazing, so beautiful, so perfect.

Earlier today Dom had explained to someone where he sat in our car. He pointed to his seat, "this is where I sit, and this is where Cosie sits," and pointing to the other empty seat, "and this is where Cora sits when she's home." And yesterday Cosie picked up a pretend phone and said, "good morning Cora, do you like your nurse today?" They are a constant reminder that there is something much deeper about family than circumstances. No matter how abnormal our life is, no matter how pathetically few days Cora has actually lived with our family, she is already a complete and permanent member who is deeply loved by all of us.

I just finished putting together the kids' Easter baskets. Three baskets, one for each of the kids, hidden around the house, where they belong.

Not too much news but some great photos

I'm keeping it brief tonight. I'm not feeling very inspired to write but it was worth an entry just for today's photos alone.

I came home late last night to hang out with Dom and Cosie but Jason, who has been there with Cora, said she was awake and playful most of the day. She even got to go for another wagon ride and checked out the view to the outside world.

The only real negative today was learning that yesterday's blood culture was positive for infection. I'm not surely exactly how this works because the culture from the day before was still negative. Either way we are just hoping to try to line up a few days in a row with negative results. We will just have to see what happens with each passing day.

Other than that, not much new to report. The kids and I had a fun day but I am definitely running low on patience and reserves tonight. Everyone in this household is overtired and grumpy right now -- myself included. Just too many nights of very little sleep I suppose, and a very long emotional toll road.

Cora's Lessons

As I sit here, I can honestly say I am very happy. Cora is kicking around listening to tunes and watching her mobile, Dominic and Cosette are at home playing with one of our dear friends and one of their favorite people, and Jason is on the way down to Stanford to switch places with me. I am enjoying a very nice, very grateful moment.

This morning we got our first negative result from a blood culture! We'd been waiting for that. This means that the antibiotics are working to treat her line infection. We will wait to see if tomorrow's culture is also negative, and if we can stack a few good days together it will be a very good sign that she is moving in the right direction and most likely has kicked this infection.

Again today Cora had no real interest in drinking from the bottle. The occupational therapist and I worked with her for about a half hour but just couldn't get her to drink anything. Tomorrow we may try turning off her feeds for a few hours to get her good and hungry beforehand -- it's possible she's just not motivated enough to really work hard at eating.

Physical therapy was another story. She really shined today. Grabbing at toys, following objects and people with her eyes. So patient and content with each exercise the therapist tried. Grandma and Grandpa were here for that and I could tell that Cora made them proud. She made me proud too.

Many of you have heard me say this before but Cora really is my easy baby. She is very good at entertaining herself, she hardly ever cries, and she is filled with love. No matter what hardships she has endured, it is so obvious that she loves life. Her wide eyes tell me she thinks it is a very entertaining show. Most mornings when I walk in she is just sitting there, calmly taking it all in.

Tonight I just feel so ridiculously lucky that I get to be her mom. She has forever changed me for the better, helped me to slow down and be on the lookout for joy, to excessively celebrate the good moments, and to find a way to be happy irrespective of any condition or line I may have previously drawn in the sand. I've also become a compulsive hand washer.

One of the things I find most amazing about love is that, the more there is of it, the more there is. It never has a bottom and there is always enough. The more I love Cora, the more I love everyone else around me. Six months ago I thought I was filled to the brim with love, but somehow I have even more today. I was a 32-ouncer of love, and somehow now I'm a Big Gulp.

Looking down the line

Cora tried for another sleep fest today, but this time I wasn't going to stand for it. I insisted she try her rocking bouncy seat and she didn't protest. The entire time she had a look like, "really mom? Are you satisfied?" But she complied, and it made me very happy.

In medical news, her blood culture of yesterday is still growing the infection despite a couple of days on antibiotics. The good news is that they now have a better understanding of the specific bacteria that's growing, so they were able to switch her to a better antibiotic. We should see some change in the next day or so.

Cora didn't have much interest in drinking from a bottle today. The occupational therapist worked with her for a good half hour but Cora just seemed mad about it today. I am starting to accept that she will have a feeding tube for a long while. The last time she had the opportunity to drink by mouth was over three months ago. I suppose it will just take time to really relearn everything.

The GI (gastrointestinal) team came for an evaluation. There had been some concerns that she was possibly having trouble metabolizing food, which could be contributing to her difficulty gaining weight. Luckily the team does not believe this to be the case. They continue to think her persistent work of breathing and some of the other heart failure symptoms are causing her to burn excess calories. The better she gets, the more we hope she'll be able to put on weight. In the meantime she'll still need the intravenous lipids to augment her food and chubby her up. I can live with that, I guess.

We also had a consult with the pulmonary (lung) team, to investigate Cora's continued need for oxygen support and her difficulty keeping fluid off her lungs. There are additional tests they'd like to run but these would require intubation and general anesthesia and she's too fragile for that right now.

There was more tweaking of her doses of heart medications, trying to find that right balance to give Cora as much support as possible.

Now that I list it all out, I suppose it was kind of an eventful day. But at the same time, as usual, we didn't learn very much.

A friend of mine was visiting today and she witnessed a conversation I was having with some of the cardiologists, one of whom said, "maybe in a couple days," in answer to one of my questions. When they left my friend turned to me and said, "what do they mean, 'maybe in a couple days'? Is it, or isn't it? What does that mean? Two days? Three days? Ugh!" It made me laugh because I had been perfectly content with the doctor's answer. We have built quite an immunity to the oddities of this system, because you really have to shift your perspective if you're going to survive in the medical world for long. You have to totally abandon the need for absolutes or blacks and whites. Everything is, "we'll just keep watching it," or, "that could happen." This has been a painful transition for a type A, control freak, like myself, who just wants to know how every story ends and on what timeline.

But I have to say, I'm glad about the change in me. I'm more okay with vagaries now. I'm okay with waiting and seeing. Jason and I have been in the very humbling position of having been told many times that our daughter might not survive. That's a conversation that fundamentally, and I believe, forever, changes the axis on which your world rotates. From then on, you live carefully on the delicate pinhead in the exact center of the pendulum. If we are even talking about things that may happen down the line, I'm okay with that. I am just happy that there is a line we can look down, that Cora is here with us, and that she has beaten so many odds already in her short life. We have far more possible outcomes from my seat tonight than we did just a few weeks ago.

As a dear and very wise friend always says, the solution is beyond my imagination. So one way to look at it is, the more days this continues, the more broad the solutions become.

Sleepytime

Cora spent the entire day sleeping. I'm not exaggerating. She woke up once at about 2:30 for her physical therapy, and when it was finished she fell back asleep. Then she woke up again at about 6:00, got a diaper change and promptly threw up, then back to sleep. I requested a bouncy seat for her to try, thinking maybe we could have a little fun activity time. I kept waiting for her to wake up and play with me, but she never did.

(I find it funny but also sad that I now consider sitting in a bouncy seat to be a fun adventure. Just think, a ride in a stroller would be a European vacation!)

Yesterday's blood cultures came back positive, which just means that eight or so hours after beginning antibiotics she still had her infection. Not too surprising. They will just keep culturing her everyday to see if she's responding well to the antibiotics.

There is a chance we will move to UCSF tomorrow, but probably not likely. In order to be cleared for moving, Cora needs to have been on antibiotics for 48 hours (which she will have been), and also needs to return to her baseline in terms of general health (whatever that is.) But we also need a room to open up at UC, and for all the other logistical stars to align. I'm not holding my breath.

I'm hoping today's sleep fest is just about getting some really good rest so she can beat this infection. Then maybe tomorrow she's going to snap back into action. But just in case her marathon sleep is an indication of something else, I'm going to stay here tonight. That will satisfy the little worry voice within me.

The Funny House

It turns out that yesterday's illness was a blood infection, likely caused by bacteria getting into Cora's central line. She had a rotten night, and a pretty rotten day, but tonight she seems to be more peaceful. Hopefully this means she is responding well to her antibiotic cocktail. Until the infection clears, she will get daily blood cultures to reveal exactly what type of infection she has, and this will guide how best to treat it. Until then it also means we will not be able to transfer to UCSF.

Cora had been so sick last night that they stopped her feeds, but they just restarted them now. Unfortunately they had to replace her NJ tube, which she did not appreciate. She also just got ten medications on an empty stomach, so we'll see if she can keep it all down.

Needless to say, today was a very frustrating day, on the very frustrating continuum we seem to be stuck on.

This morning I was "on the war path" (Jason's observation of me.) I was just so angry and agro over yet another thing happening to Cora -- one that seems like it could have been avoided -- when she already has so many things to face on her own. I'm mad that we are stuck in this limbo land in between two institutions, and that now we're stuck for even longer. I'm mad watching Cora struggle. But most of all, I'm mad that at three months into this hospital stay there really aren't any outward things about Cora that seem very much better than they did on the day we were admitted. And we don't have any things that are being actively investigated that might explain why she is struggling. And more importantly, we don't have any plans for what we're going to do to make her better. And now with this recent infection, Cora needs additional support, and I just don't feel that anyone is there to give it.

There. That is my rant.

I tried to rationally give my rant to a doctor today. Not just about this infection, but about how many things about Cora, and about all the conflicting things we've been told, don't make sense. He looked at me politely and curiously, as though I were a strange specimen from another planet that he'd be interested to study. I wanted to shout, "I am a very reasonable, intelligent person! I am not from the loony bin!" But what I instead said was, "I feel like Cora is trying to show us that she needs help but no one is paying attention. How can you explain everything that seems to be wrong with her?" In the end, he really didn't have any answers, and when he left the room I just felt a little deflated. With no answers and nothing to feel great about, Jason and I then did what any parents in our situation would have done: we went to get a coffee.

A lot of the time I feel like I am in a funny house, disoriented and confused, and I keep asking everyone I see how I can get the heck out of here, and they all smile politely and point in a direction. But when I go in that direction, I ram my face into something hard, only to realize I am in a room filled with mirrors.

I sometimes feel like the doctors have all the answers locked in a box somewhere, but they're just not sharing them with me. I guess the reality is that there really is no secret box, and instead just a pathetic shortage of answers. I wish I could find them. I wish I knew myself how to help Cora and could just bust out of here.

I guess it's time to take a deep breath. I have to say after writing this all that I actually feel much better. Yes, there is Frustration Nation. But then there is also the rather pudgy little person who is right now sleeping in the frog position on my lap.

It must be an incredibly sweet god who put her here, right in this moment, to snap me out of my cerebral adventure and quietly remind me that all is well, and exactly as it should be.