Friday, April 20, 2012

...and then my world imploded.

Hudson, you came with a crappy battery. We found out over the course of the last few weeks that your heart is just not strong enough or stable enough to last on its own, and you have been listed for a heart transplant. Your Dad and I have essentially moved in to the hospital with you (sleeping a few torturous blocks away in "patient family housing," which is basically a dorm), and we're just sitting and waiting for a phone call that will begin a domino effect liable to topple the rest of our lives. Even in a best case scenario, we will need to stay in Boston - in or near the hospital - for a few months after you get your new heart, and you will have a lifetime of medications and unbelievably frequent doctor visits, as well as a veritable expiration date on your heart. This whole process will need to happen again. In a worst case scenario...I don't want to think about worst case scenarios. There are too many of them.

I'm not honestly sure what to think of this whole situation. Right now - on heart-stabilizing IV drugs, a little bit of oxygen, feeding that basically doesn't require you to do any work, and anal-retentive monitoring of every internal and external system you have - you look really good. Some days your body seems to do a better job equalizing itself than others, but you are smiling a ton, loving attention and snuggles, and generally being your normal self. It sure doesn't look like you wouldn't survive long outside the hospital. Still, the reality of that fact has not escaped me. As soon as we got to Boston (in the middle of the night, with you in such total distress that your cardiologist didn't think you could survive a month waiting for a transplant), you stabilized so fast that we doubted for a few days whether transplant was even going to be our necessary course of action. I'm still not sure I ever had real hope for any outcome other than this. Your life so far has been so riddled with uncertainty that even when we got you home a few weeks ago and everything seemed to be going well, I was still waiting for the other shoe to drop.

Your Aunt Erin and Aunt Anna have both said particularly poignant and excruciatingly important things to me since we got here. Erin noted that my whole life has basically been boot camp for just this situation, and she's right. My life has carefully hardwired me to just buckle down and deal with even the most terrifying of medical situations, and to place almost unbelievable trust in medical science. Being a teacher has made me patient to a point that my teenage self would never believe, and especially being a teacher in a sort of sketchy district has increased my resourcefulness and ability to just put up with shit. Add to that a very conscientious effort to get over any sort of relationship craziness I may have loaded on myself over my dating years, and I'm pretty much ready to sit and deal with anything your little body needs us to do. I don't like it, and I'd obviously rather things had gone just about any other way, but this is what we've got, and that's just how it is. We deal.

The one piece of this puzzle that I hadn't been able to reconcile was the fact that some other baby has to die in order for you to survive. Some other family has to endure the loss of their child (probably suddenly, probably catastrophically) so that my family gets to keep you - so that I get to keep you. Your Aunt Anna made the inarguable point that no matter how it affects us, that other child was going to die anyhow. We're not making the choice to end another life so that yours can continue; we're just taking life from that loss. I hate that I constantly have a wish in the back of my mind for a new heart to come your way because of what that means, but I have to look at this as creating meaning from tragic circumstances. You are going to be a part of rebalancing the order of things, however unnatural the means.

Hudson, you have been the center of my universe since even before you were born, but since we've it's as if someone put a pair of blinders on my head. All of a sudden, it seems like every bit of energy I have, every conversation that happens, every little thing that happens is focused on you. You're like a black hole, pulling all my decisions towards you and soaking up any light that comes from anywhere else. (I don't mean to sound like you are any kind of burden - weirdly, this is all we've ever known you to be, and we love you painfully much, so it's no hassle or fuss at all.) Knowing how delicate you are just makes it all the more important to keep my focus completely on you. This has made a lot of decision-making easy; of course I'm going to do everything I can to extend my leave at work, I'll happily eat cafeteria food for months, and yes, we will gladly live in a shoebox as long as we get to stay close by.

As soon as you were born, the sheer volume of love I felt for you was intimidating, but now it's gotten almost scary. I've grown deadly serious, defensive, and even sometimes aggressive when it comes to your care, and dark, unsympathetic, and bitter when it comes to most other people in general. It's not particularly safe to keep this perspective (especially as a teacher, and someone who generally considers herself to be a decent person), but I'm worried. I'm already so jaded that it will be a substantial uphill battle to bring myself back to a "normal" state of empathy. Somehow (and this may be your black hole effect), I am still finding incredible joy in you. You've been holding your head up and looking around tons, grabbing onto and holding fingers, hair, clothes, small toys, and - of course - your assorted tubes and lines, and being wonderfully smiley, conversational, and snuggly. As in Portland, everyone here seems impressed with how resilient, friendly, and even-tempered you are, and rightfully so. I think I'll be okay as long as I can still be made insanely happy by you, even if so much else is so dark.

Sunday, April 8, 2012

Bridge sales skyrocket this time of year.

Hudson, something you need to know about me is that while I respect the hell out of other people's religious beliefs, faith, superstition, or what have you, I personally don't buy into any organized religion, most notably anything that recognizes any concrete "god." In fact, the last...erm...lifetime, I guess...has made me excruciatingly skeptical, to a point where I am profoundly comfortable calling myself an atheist. When I feel like it's being imposed or really stuck under my nose, religious belief makes me pretty angry sometimes, to a degree where I often forget the value it holds for the people practicing it.

I almost hesitate to write this for several reasons. First, I know many people in your world are sustained by their faith, believe that god/Jesus/whoever provides some positive influence or support in their lives, or see religion (formally organized or otherwise) as a meaningful facet of themselves. I know I've upset people in the past with my refusal to embrace some element of faith, but there's no getting around the degree to which I just don't buy it. Second, of those faith-sustained people, many of them are contributing to your care by praying or sharing your name in community prayer circles. I don't know the correct names for these things; while sending thoughts to a family member makes some sense, the idea of praying for some kid multiple states away who you've never met just because someone who is a member of an affiliate church to your own happens to have heard of them seems so bizarre to me. I don't want anyone to think I begrudge or don't fully appreciate the efforts they are putting forth, especially when there is little else that can be done to help.

Lastly, and perhaps most prominently, there is a part of me that wishes desperately for you to have the comfort and security of faith. This is something I have never had. I was raised with a somewhat vague understanding of what religion even was, and the notion of faith - most notably the idea that there could be some higher power that influences my life in any way - was just not present at all. I always thought it was really weird when my friends forewent playdates in order to go to church on Sundays, or when a sleepover wasn't possible because of Friday Shabbat services; couldn't they just choose to do something play with me? Still, those friends always had a sense of being cared for by both a community at large as well as a loving deity. Challenges - even tragedies - had some kind of reason, and triumphs - even personal achievements - were enriched by something greater. What a beautiful idea.

It's just never worked for me. Conceptually, organized religion has always struck me as kind of weird. Can enough people truly believe in the same thing to justify a complex organizational system that can span continents, buildings with expensive upkeep and logistics, and frequently entire educational protocols to indoctrinate community youth? Clearly the answer is yes, but in a world where my closest circle of friends still choose their own unique dishes when ordering Chinese food together, it seems improbable. Even in the context of the reform Jewish synagogues where I've had the bulk of my organized religious experiences, I couldn't buy in to the unison chanting and rapt attention to recited scripture. It often felt like everyone attended secret practice sessions that were scheduled behind my back. ("Okay, everyone, on three, we all chuckle appreciatively at the Rabbi's pun. One...two...kvell!")

Frustration was part of my hesitation, but fear became a big piece, too. When some of my cousins were baptized, I remember being terrified of the icons and sculptures in the church; seriously, a miserable-looking, blood-covered dude with a spear sticking out of him and thorns smashed into his forehead? That was TERRIFYING. Can a totally oblivious five-year-old handle over an hour of hearing about the potential flames of hell that engulf the non-baptized? I'm going to have to say no. I spent half of one service hiding in a corner crying chapel, and had to be rescued by my (once-Christian, and therefore credible) mother who explained that Jesus wasn't going to do anything bad to me. I never really bought it, and still get kind of woogly in even the most plain, contemporary churches.

My family's assorted synagogues have generally been beautiful, approachable spaces, but I don't think I'll ever get over the assumption that I jumped to when I was just old enough to read. I noticed the tiny plaques that are plastered all over most religious buildings identifying donors or the people in whose honor a bench, piece of art, chair, or other structure had been donated. In my fairly jumpy six year old mind, these were grave markers identifying where the cremated and sometimes impossibly compacted remains of the person whose name was listed were being stored. I thought that the tiny metal plaque on the sanctuary seat concealed Erma Steinblatt (grandmother to Abby, David, and Robert), and that the wall covered with the names of synagogue supported was actually a tiny mausoleum where silver level donor Simeon Goldfarb III and his wife Muriel Rosen Goldfarb (among dozens of others) were interred. Suffice to say, even the cheeriest of Hanukkah services scared the hell out of me for years.

Still, it hasn't always been bad. There was a brief period of time in my early teens when I was totally cool with the idea of being Jewish - like, a legit Jew who went to Shabbat services or at least lit candles and said prayers at dinner, and who was part of the temple youth group, and who was going through confirmation, and who could at least read a teensy, weensy bit of Hebrew. My parents chose to take the family in the direction of actually being Jewish before my Dad's first kidney transplant (rather than embracing my mother's Presbyterian roots), and for a while, I was happy to go along with them. The community was really nice, for me and for my parents, and while I was deeply suspicious of this so-called god everyone kept going on about, I liked the discourse about spiritual matters, and all the singing. A major turning point came when I started to try to go through the confirmation process and was told by a relatively unexperienced rabbi that I "wasn't Jewish enough." Imagine someone has been trying to convince you to get a tattoo for years, and you finally work up the guts to do it (even though you still have serious reservations, and don't even know what you want to get)...only to have the tattoo artist tell you that your skin is too dark or light or something arbitrary like that. Do you really bother to try again - perhaps at a different shop, or even just on a different day - or do you say "screw it, clearly this isn't meant to be,"? Yeah...we know where that went. (On an unrelated note, I now have nine tattoos.)

Since that point, my wariness of organized religion escalated. I developed a strong bond with some of my closest friends in college over mutual beliefs in earth-based spirituality, and found comfort and joy in that for some time. After college, though, I feel like shit got real. My ability to look at genuinely nasty events in my life (my Dad's ongoing illness, my relationship woes, my Mom's instability at times, my Papa's relatively sudden death, money being impossible to manage, jobs being miserable and miserable to find, etc...) and think that they were either part of some plan or ultimately balanced by beauty in the world weakened. It wasn't even that bad started outweighing good; I just stopped being able to see any order or reason in the grand scheme of things.

One night a few years ago, I was sitting on the couch with your Dad, and the reality of my complete lack of faith hit me like a sack of bricks. I knew - absolutely, unswervingly, and with brutal depth - that I don't believe in any semblance of god. If there is some higher power, I don't buy it. This was a crushing realization, especially since it was such a complete paradigm shift; once that semblance of faith was gone, the hole where it used to reside closed up, seemingly permanently. I still completely respect people who do (I often envy them) but I can't bring myself to believe. When we got pregnant with you, I had a momentary flicker of wondering whether some beautiful form of the divine had contributed to your existence, but then I remembered where babies come from: sperm and eggs. Biology. You came from your Dad and me, and biology was what was making you grow. When we found out that something was wrong with your heart, a lack of self or divinity to blame actually made the news easier to swallow. Once again, this was biology at work, but this time science was being a heartless, defiant bitch rather than a dutiful construction worker.

 I work and live in an environment that is predominantly free of religion (public schools really don't like you to openly discuss or, y'know, teach about spiritual beliefs unless it's in a historical or analytical context, and even then eggshells must be trod upon), plus we live in an apartment that doesn't have an easily Jehovah's Witness-accessible door, so I'm entirely unused to having religious language directed at me. Since you were born, and specifically since you had your episode last week that landed us in Boston with even the possibility of transplant, my internet presence has been bombarded with promises of prayer, hopes for divine intervention, assurances that entire congregations (some local, some distant, many populated by people who have only heard of you) are praying for your recovery. I appreciate this profoundly, regardless of the flavor attached to the sentiment, but boy does it feel odd to me.

My cousin stopped in to our place visit with her family a few weekends ago, and in the course of discussing choices one makes about parenting, she brought up a fascinating point about god. Her son was being raised to keep kosher and to believe in god because (as she said) you can always change your mind about traditions and belief later in life, but if you're raised with skepticism as your starting point, it's almost impossible to adopt faith. Hudson, what the heck can I do with you? Part of why I just can't bring myself to buy into the notion of god is the hell we've gone through (you, me, your Dad, and our communities at large) because of a few errant cells choosing to phone it in for one key developmental moment. I don't blame or look to any higher power for explanation or resolution, but I feel like I'm going to have to be excruciatingly careful to leave the window of possibility open for you. Faith is one of humanity's greatest securities, and just because I've never had it doesn't mean you shouldn't.

Wednesday, April 4, 2012

The good stuff

Clearly, nothing is normal while you're in the hospital, even less so than when we were in Maine. For right now, you're basically a puddle of baby in the middle of thousands - if not hundreds of thousands - if not millions - of dollars of equipment. Still, I'm fighting pretty hard to keep in mind the fact that you were making some amazing leaps in the few weeks we were home. You had everyone more than impressed at your growth and progress, so I'm going to dwell on those for a few.

Right after we got home, you started smiling like crazy. I'm content to tell myself that you were just happy to be home and free from medical meddling, but of course that might have just been the right time for such a developmental milestone. I'm not sure if this is a "normal" baby thing, but you tended to only smile when you were in this one particular alert, perky mood. When you were, however, you could have minutes of grinning and cooing. Even if this only happened once a day, it was still just about my favorite thing. You've been smiling in your sleep since you were just about a month old, which is still adorable and wonderful, but the intention-laden smiles that start in your eyes...those are something else.

Obviously things are different while you're medically sedated, but I'm increasingly under the impression that you are a VERY quiet little dude. It was only since you got home that you started making any kind of conversational noises, and even those have been pretty quiet and rare. You really don't cry unless you have a good reason (hunger, pain, extreme irritation, a massive deuce in your diaper, etc...) Aren't really little babies supposed to be, y'know, noisy? I mean, I don't WANT you to be loud, but the noises you make are just so amazing that I want more of them! (I'm sure I'll be kicking myself in a few months for even thinking that.) You've got a few specific little happy noises that you make, including a very pronounced "mmm-gah!" and a sort of chirp, to say nothing of your very distinct cries.

Some of the nurses at Maine Med were giving your Dad and I weird looks when we teased you for just whining when nothing is wrong, but seriously dude. "Who's a little crybaby? Are you gonna have a little baby cry?" has become a fairly standard response to your "I'm just irritated," or "I want something that you're already working on getting me," cries. I think we're about not-dribbly and baby talky as parents can realistically get with a tiny baby, but I think a lot of that is in response to you. You have some of the most mature facial expressions I've ever seen on a baby - hell, a small child - and you are NOT afraid to use them. I've seen indignant, irritated, judgmental, flabbergasted, disgruntled, incredulous, contemplative, appraising, furious, playful, and only just recently something that I can confidently call happy. Maybe I just know too many adjectives, but I'm fairly confident that I've even seen sardonic a few times.

About a week ago, you started holding your head up on your own. You've been flailing for weeks, and have been able to adjust your position if you were on your tummy or being held upright, but on Saturday afternoon, you just went for it. In the morning, you still needed a hand at the back of your head to make sure you didn't lurch backwards and lose control of your head (which, incidentally, is only in the 10th percentile for size, so it's not like it's too crazy heavy). In the afternoon, I picked you up and when you bounced your head back a little, it just stayed. It seems like being able to look around and choose what you are seeing makes you really happy.

Saturday - of course, just before you end up being intubated and sedated for days - you started to actually pay attention to high-contrast images in a book. You were absolutely fascinated by this one book of black and white images of animals, which was so massively comforting. I've been terrified from the beginning that you would lag developmentally from having so many days under sedation, but you seemed to be meeting all the targets everyone wanted to see. I can only hope that continues after this next round of time spent out of the world; I don't think your Dad and I will let you lose any ground.

There are all sorts of other magical baby things that you've been doing that I know I don't want to forget, but I'm honestly pretty drained and the word-working section of my brain is getting kind of...not good. What've we got...

  • Your sneezes are pretty much the cutest expulsions of bodily fluid ever. You open your eyes in a vaguely confused expression, then when you let a sneeze go, your whole head rattles around for a second, leaving you looking like you really just don't know where you went for a second. Best sneezes ever.
  • Sometimes it sounds like you're deflating. You'll take a deep breath, hold it for a second or two, and then let it all out with a little sigh. My favorite times when you do this are when you have gas, and when you're settling in to sleep.
  • You are the greatest sleep snuggler on the face of the planet. Your favorite places to sleep are the crook of my arm, right up against me, and propped up against my chest, but regardless of where you are, you like to either burrow in to get closer or grab onto some part of me with your tiny vice-like fingers. There is a high incidence of me getting drooled on (some of my shirts have giant crusted-up patches on the shoulders), and you sometimes wallop me in the face with your head when you're adjusting your position, but whatever. After that, you settle in and are just happy as a clam.
  • Sometimes you click your tongue. I don't know why you do this, but it's really stinking cute.
  • Every now and then, you get really excited and kick your feet like you're trying to go swimming. This is pretty funny because you don't yet have the muscle control to actually move yourself anywhere, but it seems to make you awfully happy to make the attempt. 
  • Just in the last week, you started to get pretty consistent in your efforts to make conversation. If you made a noise, one of us would parrot it back, and you typically would make another noise, which we would repeat, and so forth. This elicits smiles.
  • Your range of expressions is incredible, as I mentioned, but you have one particular face that slays me. I think this happens when you're inquisitive or irritated, but you purse your lips in such a way that your upper lip comes to a little point in the middle. I call it your "bird face." 
  • Oh, do you fart. 
  • Burping you is one of the funnest and funniest things to do. Not only can you let loose with some pretty insane belches, but you make an absolutely hysterical face while someone is thumping your back. Your Nana and Papa have pictures; you're like an irate chipmunk.
  • Sometimes when you smile, you try to turn your face away like you're being coy. It slays me.
I know there's more, but that's the good stuff I'm trying to keep at the front of my mind. I really do know how dire this situation is, and that's part of what makes it so difficult to watch the videos we have of you just squirming around and being normal, but sometimes they're comforting. Until/unless you become a parent, I don't think you will know the crippling love and fear that your Dad and I are feeling, but it's there, simultaneously crushing and sustaining us.

Monday, April 2, 2012

...but I want to cross the bridge now...

We're in Boston. From the beginning of your whole ordeal (and this is beginning in utero), people asked us whether we were going to come down here for a consult, or for any of your operations, or for anything at all, and we consistently said that we were comfortable and happy with the medical care we were getting in Maine. We were...more or less...but I kept getting edgy when little problems were left not only unresolved but were sometimes even written off as "no big deal" when they were clearly anything to be concerned about. We were told again and again that cardiac patients - especially infant cardiac patients - are tricky because until something is obviously wrong, it's impossible to preempt any problems with preventative treatment. Basically, until you're in crisis, even the most bizarre changes have to be more or less brushed off.

Two weeks ago today, I took you in to an emergency appointment with cardiology. Your chest had started making this godawful clicking, grinding noise that made me think your sternum had separated. Turns out I was right (a fact we didn't confirm for two more weeks), but no one seemed particularly concerned; in fact, this is apparently kind of common, and we were told to just let them know if things got worse. Your breathing was a little funky, too, but because your oxygen saturation was exactly where we wanted it, your heart rate was rock solid, and both your echocardiograms and EKG's looked fine, we were sent home and told to just keep an eye out for any changes. My mommy-gut was still unsettled, but your cardiac nurse practitioner told us that treating the problems you were presenting was a bridge we couldn't cross until we got there.

This past Friday, your breathing still just wasn't right, your chest was popping like crazy, and you had slacked off your eating to a point where I was worried about hydration (a major issue for anyone with your heart condition). We went in to see one of the cardiologists, and he spent over an hour observing you, only to decide that there was nothing obviously wrong. Once again, we were told to just watch for any new patterns, and home we went. Friday night you did a little better eating, and actually had a great night of sleep. Saturday was a non-stop fight to get food into you, but other than being a little more sleepy than usual and a little less smiley, you seemed fine. Although the mommy-gut was sure we were prolonging the inevitable by not going to the hospital yet, I let myself be convinced that you were either just getting over a cold or feeling kind of crappy after a massive bundle of vaccinations earlier in the week. I've been told that it's a fairly normal baby thing to be perfectly healthy and stable, then nosedive suddenly into serious illness, but yesterday caught us completely by surprise.

Saturday night, you and I fell asleep on the couch and had a pretty normal, snuggly night. You took a bottle while still mostly asleep, like normal, and woke up kind of cranky and fussy around 4:00AM, like normal. Your Dad has been wonderful about letting me get extra sleep on the weekends by doing your 5:00AM antibiotics and meal, then the 8:00AM as well instead of me needing to wake up for the latter, so after he was up and moving, I went to go catch a few uninterrupted hours of sleep. Part of me knew we'd end up at the hospital if you didn't eat well, but I figured we'd cross that bridge when we got there.

I hope you grow to be the rock-solid sleeper that your Dad is rather than inheriting my unfortunate tendency to wake up - and I mean fully, completely be shocked into consciousness - with the slightest sound or movement. I almost never make it through a night without waking up at least once or twice, and my lightest sleep is typically right after I've fallen asleep, so having a disturbance-free first hour or so of rest is key. Yesterday morning, I heard you start to fuss not long after I crawled into bed, and was aware of you crying off and on as I drifted in and out of sleep. It seemed like it had been a matter of minutes since I left you and your Dad out in the living room, but suddenly your Dad burst into the bedroom, panicked because he hadn't been able to get you to calm down in something like an hour and a half. My first thought was disgruntlement that he couldn't get you to settle down on his own, but when I heard and saw how hard you were crying, I started to panic a little, too. We called cardiology and were told to go to the ER - not because it was an emergency, but because the practice had moved to a new office over the weekend and they didn't have anywhere else to check you out. I got you to calm down enough to put you into warm clothes and the car seat, and we casually made our way to the hospital.

Here's the funny thing about the ER: no matter what shape someone is in at home, the second they walk through those doors, everything gets worse. This might be the same phenomenon as a nasty cut feeling better when it's covered up with a band-aid so you can't see how bad it is, or how a terrifying movie isn't nearly so awful if you cover your eyes (even if you can still hear everything and see the looks of horror on the faces of the people stupid enough to keep watching). At home, you seemed to be breathing a little fast and you were a little pale. At the ER, a triage nurse walked over to us...and suddenly you were in respiratory distress and your hands, feet, and lips had gone purple. You were swarmed by a dozen doctors and nurses who had never worked with you before, so I had to ramble off your complete medical history half a dozen times while everyone panicked about your numbers (which for any other baby look hideous, but which for you were actually fine). Your Dad ran off to make phone calls, and meanwhile the decision was made to admit you to the PICU.

We were given the dreaded direction to "go ahead and find somewhere comfortable to wait while we settle him in." I don't know why, but whatever it means to settle you in apparently includes aggravating you to a point where you nearly crash. This has happened several times, and yesterday was no exception. What should have been forty-five minutes of poking and prodding turned into three hours of us waiting and the pit of my stomach sinking deeper and deeper. We came to find out that you nearly coded while you were being sedated, a decision that was made so that you could be intubated and have your heart do as little work as possible. Your cardiologist did an echocardiogram and confirmed that your heart function had deteriorated in a way that both couldn't be fixed and didn't have an obvious cause. He presented the option of transplant, but was emphatic that we wait until the next morning to decide if that was going to be our course of action. I asked for more information, and was told "we'll cross that bridge when we get there." This time, waiting wasn't an option.

Hudson, I truly hope that you never need to make such a dramatic decision about anyone else's life, but if you do, I hope it's as easy for you as this was for us. With two choices - pursue a transplant in Boston or just make you comfortable until your heart gave out - we didn't hesitate for a second. Within an hour or so, arrangements had been made to move you to Boston the next day, but within a matter of hours after that, the team from Children's Hospital Boston decided to transport you that night. I went with you in an ambulance (and by that, I mean the hospital-owned spawn of a monster truck, ambulance, and child's coloring book explosion) and your Dad drove behind us, and we arrived in Boston a little after midnight.

Sometime we'll be outside during the summer, and we'll drip some juice a little ways away from an anthill. What happens next will be a pretty solid illustration of what happened as soon as we got you into the Cardiac ICU. Almost twenty different doctors and nurses swarmed and mobilized to get you comfortable and settled in, and within the hour that your Dad and I managed to stay awake enough to fill everyone in about as much of your history and condition as our brains would let us regurgitate on almost no sleep, your numbers started to stabilize. Overnight, everything stayed more or less the same, and today has been delightfully boring.

I still can't bite back the terror. Yesterday, your cardiologists in Maine made things sound extremely grim, and while everyone here has been so proactive as to almost seem optimistic, this is serious. Seriously serious...with a side of serious sauce and serious fries. There's no forgetting the fact that we are now looking at a survival rate below your originally projected 95%, no matter what our course of action, and no matter how stable you seem. I knew every successive hospitalization would be simultaneously easier (from a combination of experience and simply being beaten into emotional submission) and harder (because with every day, you're more our little boy), but this is just a whole new ball game. Your Dad and I are trying to make something of a sport out of learning the ropes in a new setting with new people, and the fact that this really is one of the best possible places for you to be is comforting...but still.

While I'm writing this, your Dad is passed out face-down on the window seat/parent sleep area in your room and I'm just barely keeping myself awake. Even though you're sedated, you've had a few moments of fussing yourself awake because you've been congested or accidentally in a weird position. It's really comforting to see you do anything even vaguely normal after such a dramatic, almost unbelievably sudden transition from sleeping comfortably in my arms to being hooked up to half the medical world on a hospital bed. I'll write more about this bizarre but vital place where we're likely to spend the next few weeks - maybe months - of our lives, but I think I should wake up your Dad and try to find the cafeteria.