Sunday, February 26, 2012

Hud is a battlefield.

Hudson, you're making things very interesting. On the one hand, every nurse or doctor who sees you notes that you are ridiculously cute/handsome/beautiful/etc..., which is awesome and seems to predispose them to treating you with a little more sweetness than might be normal. On the other hand, you are apparently a vehement guardian of your circulatory system. On Wednesday, it took upwards of ten different people to get an IV into you, and every time doctors have needed to blood from you for lab work, at least three people have needed to attempt it before someone is successful. This means that you are not only an exciting challenge for seemingly every medical professional who you encounter, but that most of you looks like a slightly bruised pincushion. 

Everyone tells me that these earliest scars are unlikely to last past childhood, but right now, it's really tough not to see your body as a battlefield. Right now (and I know these will go away soon, but not soon enough), you have dozens - and dozens - of tiny little needle pricks from attempted blood draws and IV placements, and your heels are practically raw from sticks to get small blood samples. From operation #1, you've got the big scar from the base of your neck to the bottom of your sternum, a belly button-sized scar from your chest drainage tube, a few scattered tiny holes from a line that went directly into your heart, and a line-shaped scar from your arterial line (basically a giant catheter into the artery in your right wrist). From operation #2, the big chest scar now gets the added flourish of stitches, plus you had two small holes for small drainage tubes between that scar and the previous drainage tube scar. Soon, you'll have a central line placed that shouldn't leave too much of a scar, but it's still something else. That's a total of six, not counting all the tiny scars from stitches holding things in place and all the dot from IVs and other stuff like that.

You know how many scars I have? Three. None of them are longer than, say, a quarter inch. I don't even know where two of them came from, so clearly whatever caused them was unremarkable. Your Dad has a few, most notably a burn scar on his forearm from an unfortunate incident with an iron when he was less than a year old, two tiny scars from a hernia operation when he was four, and most of the rest that haven't faded yet are the result of brushes with your Aunt Erin and Uncle Jeff's cat, Az. You are so much more bad-ass than either of us. 

Today, on your one month birthday, I'm back in the original hell of the SCU waiting room. I got to spend a nice chunk of time holding you this morning because the IV that was so hard-won on Wednesday gave out overnight, so today you weren't hooked up to anything in particular. You're consistently impressing the hell out of everyone (not least of which me) by being so calm, easily soothed, and generally good-natured despite everything. Still, another three people failed to get an IV into you this morning, so in order to get you the antibiotics you need and be able to get blood out of you without ten people needing to try (and likely fail) to do so, you're down in the OR right now having a semi-permanent IV put in. 

Less than on Wednesday, but still quite a bit, I'm feeling that pit-of-the-stomach aching, flight-or-flight-inducing, protective agony. Of course, I'm overtired, haven't eaten enough, and have the added fun of being by myself because your Dad is home sick. Everyone has told me that this is a quick procedure with a minimal chance of complications, and you should just be in the PICU overnight for observation; that doesn't shut off the impulse to panic. I just have to keep telling myself, again and again, how insanely, super-humanly strong (or whatever) you are.

Strength is clearly a weird thing. I've frequently been called strong for having put up with all the crap that I've had to put up with since we found out what was going to be wrong with you. I'm rocking over five months of "incredible strength," and you know what? I don't feel strong. I don't feel like what I'm doing is the result of any effort or innate ability; I'm just waking up in the morning and doing what I need to do. It's not like I have a choice (short of abandoning you and going to live in some fantasy world where none of this ever happened), so does that really imply strength...or am I just really adept at accepting reality? If that's strength, then my definition is clearly different. In any case, I'm really, REALLY sick of being complimented on the ability to put up with shit without falling apart. Compliment me on my ability to digest efficiently or breathe well - that takes the same amount of intent.

You, on the other hand, clearly have something more going on. My reflex is to call you strong comes from my assumption that strength - physical, internal, or otherwise - is what has carried you this far. Medically, you've been sort of a trainwreck, but you look and act like a healthy baby who is just pissed off about being poked and prodded so much. It's almost impossible to believe that you've looked death in the face (and given a judgmental glare then moved on with your life) at least three times in the month you've been alive. Does that make you especially strong? I sure as hell think so. By the time you're old enough to walk and talk, you'll have survived more than almost anyone I know. You might look like you sauntered through a firing range, but you can still give me an appraising stare, squirm a little, then fall asleep with a vice-like grip on my finger. THAT is strength.

Saturday, February 25, 2012

Fear is the path to the dark side.

I've had a number of substantial fears in my life. Some have been rational, others less so, but this week I discovered a whole new one that trumps them all. I'll get to that, but first, let's review a few classics.

#1. The dark. I think it's perfectly natural for kids to have some fear of the dark. Heck, it's a natural instinct for human beings to be wary of the dark because you don't know what's in there. The dark might conceal predators or other dangerous animals (say, a puma or a mastodon), and it might conceal a safe path home. For me, a fear of the dark is inextricably tied to a fear of the unknown. The dark masks all, leaving the mind free to concoct horrors far beyond that which is possible, even in the basement of a Connecticut suburban home or New Jersey farmhouse. A memorable trip to my Mom's parents' place in New Jersey (near one of Washington's Revolutionary War winter encampments) consisted of me essentially avoiding the door out of the house because I would have had to pass the door to the basement. I'd heard some noise, probably just part of the heating system or plumbing, but I got it into my head that the basement was swarming with 17th century ghosts hell-bent on doing unimaginably terrible things to me. Years later, my Dad confessed to me that he too was terrified of that basement, and who the hell can blame either of us? The darkness was only part of the problem there, but that basement came to represent all that darkness could do; it consumes, contains, confuses, and tricks the mind into elaborating upon extant fears until one is whipped into a state of uncontainable terror.

# 2. Needles. I hate even bringing this up, Hudson, because you have already been poked with more needles in your almost-month of life than I think I have in my cumulative twenty seven years. With luck, you'll grow to accept and ignore needles as a necessary part of life, because they will be a frequent feature in yours. I don't really know where this fear came from, but as far back as I can remember, I've been so utterly terrified of needles that doctors and dentists (see three on this list) became associated with torture, even if it wasn't (as my Mom so simply put it) a "needle day." Oddly, having blood drawn became completely okay in the last few years, and tattoos are so completely fine that I don't even think about that as a needle-associated experience. Go figure.

#3. Doctors, and any other medical professional who has to "do stuff" to me. There was no way I was ever going to live the Connecticut dream of settling down with a nice, rich, Jewish doctor. The rich and Jewish parts are moot, and your Dad is quintessentially nice, but a doctor? Hells no. I've only in the last month learned to see doctors as anything but harbingers of doom, and even now, I am extremely wary of any doctor who has not proven him or herself as positive, warm, and not just focused on doing procedures and getting test results. I had a pediatrician growing up who frankly just made my teeth crawl. Not only did he regularly surprise me with injections (which I suppose makes sense, since younger kids get a ton of them), but it felt like every time I saw him was a guarantee of hearing about some terrifying thing that I could hypothetically get or have. Nothing was helped by the fact that he was our neighbor, so threats of "I suppose you could have x, y, or z, so we should check you out" were nearly constant. Note to parents: don't get a socially awkward, blunt dude as a pediatrician for your hypersensitive daughter prone to dramatic overanalysis. Suffice to say, I developed a bit of a neuroses that has never entirely worn off, even after such good experiences with your doctors recently. All doctors set my teeth on edge, at least a little.

#4. House fires. This fear feels more rational than the others, especially any time I have shared living space with others. Some stupid fire safety video that I saw in elementary school did a thorough job of driving home the point that house fires can happen anywhere, at any time, and (seemingly) with no cause or origin whatsoever. For years, I believed unswervingly that my house could just sporadically catch fire - almost definitely in the middle of the night when no one was awake to notice or react until our bedrooms were filled with smoke - and that I, my family, and all our worldly possessions would be consumed in flames. For a brief period of time, I had a bag packed with all my favorite toys and books inside, ready to grab when I inevitably needed to be pulled out of a window by a fireman. I've outgrown this fear - mostly - but several incidents in college when idiots who lived in my dorms actually did start fires, and a few instances of dumbass neighbors who seriously couldn't cook to save (or not accidentally end) their lives have reinforced the threat. If our current stove didn't cause clouds of smoke every time we bake something with oil on it (and I love roasted veggies), we would have smoke detectors in every single room in the apartment.

#5. Swarms of insects. One bug, even a really creepy and weird one? Whatever. A few bugs? Meh. Ten or fifteen bugs? I'm wary, but still cool. Several dozen bugs? I might need to go somewhere else. Uncountable numbers of bugs? I'm likely to vomit in my mouth, scream, run, and start blindly punching people out of the way...all at the same time. Twice in my life, my living space has been infested with book mites. These tiny little crawly things aren't even interested in mammals, instead preferring to feed off mold exuded by paper and wood, but when there are dozens of them crawling over every inch of every bookshelf in a habitat filled with bookshelves, it's a friggin' nightmare. The second time this happened was in your Dad and my second apartment together, and he was out when I made the discovery. I know it was roughly two in the afternoon when I found them because I spent the next three hours sitting on the dining room table, terrified that they had gotten into the carpeting, trapped on the one unupholstered surface in the apartment. Clearly, I would do poorly in the Amazon.

I'm pretty damn uncomfortable with a few other things, including ghosts (yes, ghosts), graveyards (because there could be ghosts, zombies, vampires...who knows?), water I can't see the bottom of (I don't know what's down there: it could be decomposing corpses hidden there by the mob!), photographs from the Victorian era (I have no idea what's up with that one), and sometimes mirrors (mostly because of some stupid short story I read as a kid: I won't even describe it). None of these even hold a candle to the gut-wrenching, nerve-shattering, psyche-shaking fear that I discovered last Wednesday when you had to go in for emergency surgery.

Your first operation was nightmarish. Your Aunt Erin noted that I looked "like the end of the world" midway through that afternoon, and that was quite accurate. You'd crashed twice after coming back from the OR, and no one really knew how you were going to fare. I had only slept a cumulative fifteen hours or so since giving birth to you, so of course I was a wreck, but the fear and anxiety I felt was terribly abstract. Your Dad and I had only spent a matter of hours with you by that point, and while we both felt an innate, instinctual connection with you, it was not a particularly emotionally deep one. While you were still knocked out and on the respirator, the fact that you were you started to click a little more. Once you were conscious, then when we were feeding you, and then when we could hold you...that's when it all started to fall into place. We lost a few weeks of bonding time, but once we could get our hands on you and see you be the little person who you are, I think we really made up for lost time.

That is why your operation this Wednesday revealed my new greatest and hugest fear: something happening to you. The first operation happened to some baby that supposedly "belonged" to me and your Dad. The second one, no matter how less invasive or substantial, happened to our son. Granted, I was also pretty insanely sleep deprived for that one (since I had stayed up all of the previous night with you, trying to keep you as comfortable as possible despite your growing infection); I definitely gave up any pretense of being the stoic, calm parent the PICU staff consistently lauded me for being and just cried a lot on your Dad, even when you came back from surgery and were completely fine. Hudson, your next two operations are clearly going to be more hellish than the first, even if we know what to expect, if for no other reason than that you will be in ANY danger. I'm going to do my damndest to keep this fear in check, so as not to smother you or subject you to too many paranoid doctor visits, but be prepared, kiddo. You have a Mom who would sooner face a swarm of MD-bearing needle-bugs in a dark burning building than see anything bad ever happen to you.

Thursday, February 23, 2012

I get it now.

Hudson, I am going toot my own horn for a minute here, but this is intended to be a eons-reaching, universal lauding of mothers everywhere. Moms are goddamned superheroes. I never realized this until my weird new superpowers started to really manifest, but now I know. I also really, truly GET the Mom tendency to overreact or be vaguely (sometimes completely) irrational about things; if you're sometimes right about something drastic, dangerous, terrifying, or awful, it must be tremendously easy to register false positives in safe situations. What powers, you may wonder, does such a commonplace hero possess? Hudson, let this be a brief guide to a few of the superhuman things that you have triggered in me.

1. Danger Detection, or, "Doom Sense." My ability to preemptively identify something unsafe, problematic, or generally dangerous has blossomed into an outrageously accurate sensor. Before your milk protein allergy was "diagnosed" (I only put this in parentheses because damn it, I caught it DAYS in advance of any medical professional), I knew there was more wrong with you than just indigestion. The day we were initially discharged from the hospital, I knew that the slight redness on your chest was more than just "something to watch," and made three different doctors confirm for me that it wasn't a big deal. Morons. Before we were even readmitted (twelve hours later), I knew you were going to be sicker than just having a fever. This power is strongly affected by sleep deprivation and hunger, however, as I tend to go into uber-doom mode when I am overtired or have dangerously low blood sugar (I refer you to yesterday, when you undergoing exploratory surgery - ultimately something minor, in the grand scheme of things - sent me into a torrent of panicked crying and pessimism).

2. Hyper-endurance, or, "Put-up-with-ed-ness." I mentioned to someone months ago that despite hating needles, I am 100% fine with the idea of blood draws or injections that in some way, shape, or form benefitted you. I needed the second round of the glucose tolerance test (which requires four blood draws at one hour intervals after the initial blood draw to establish a baseline), but whatever. I don't even know what to say about the time we've spent in the hospital, or the emotional and physical hell that has been, but I've just straight put up with it. Speaking with (or, I suppose, complaining to) some friends, I discovered that pretty much everyone thinks it's ridiculous to ask mothers "How can you do/put up with/live with/manage (insert challenging thing here)?"...and yet everyone asks. The answer is that I put up with this shit because there is no choice. It's what you do for your kid.

3. Gross thing-tolerance, or "Don't Vomit-itude." I've seen some awful shit happen to you, Hudson: truly terrifying medical crap: the stuff of nightmares: the sorts of things that I imagine any parent would sooner leap off a cliff into a pit of rusty forks, broken mirrors, and flaming acid than to see happen to their child. I've nearly passed out, nearly thrown up, nearly run screaming from rooms...but I haven't. Poo diapers and spit-up? Please. I'll take explosive diarrhea over every square inch of my bedroom over some of the other business that's happened. The complete willingness and ease with which I've processed even truly hideous things is certainly on a different scale from the norm, but I can truly understand now how my parents were able to handle me walking into their room in the middle of the night and vomiting on a pile of clean laundry (and a nice rug...and all over myself).

4. Vicious aggression towards people who don't do the right thing for/harm your kid, or the "I'll punch you in your damn face" reflex. It has been SUCH a force of will not to become furious with the people who have caused you physical pain, even when doing so directly contributed to you receiving the care you need. Sure, your surgeon is an amazing man who has not only done spectacular work on you, but who has been attentive and involved throughout your whole ungodly long recovery process, but knowing that he cut into my little boy has been enough for me to want to break his freaking kneecaps every time I see him. Clearly I haven't, but the impuse has been there. Woe betide the first kid who gives you any shit at school, on a playground, or whatever, and may some higher power have mercy on any adult who makes some kind of mistake with you, no matter how minor. My wrath will make genocide look like a friendly neighborhood BBQ.

5. Painfully accurate knowledge of people's qualification and personal merits, or "Human Quality Control." There have been thankfully few nurses who we have met through your entire stay here who have been anything less than exceptional, but there have been a few, and I have known from the second I met them that they were sub-par. I knew there was something less-than-amazing about that nurse who was taking care of you the night before we were erroneously discharged. Of course, it would have been unspeakably rude and likely poorly received to say the charge nurse "this woman seems kind of...not awesome..." but clearly I should have. The one cardiologist who I worked with throughout the one night you were home is by far my least favorite in the practice, and you know why? I don't. He just pops up on my radar as somehow not excellent. He's made a few kind of mediocre judgment calls, and even apologized for some of them, and I knew - I just KNEW - that there was something iffy about him. This is starting to transfer outward to other categories of people from just medical professionals, too, so I'm kind of excited to see how this heightened sense works in other contexts.

6. A dark, dry, and jaded twist to my sense of humor, or the "This is just how shit is" factor. This could be a unique one for me, given that I was already starting out as a "fuck this glass, of course it's half empty: that's just physics," type of realist, but I've found that my ability to look at any situation with an element of humor in my mind has become a little twisted. I can't think of any specific examples of this because it has become pathological; I don't know when I'm NOT trying to verbally lighten my sense of disenfranchisement. I think most parents pick up a little of this darkness (at least at first) due to sleep deprivation and overwhelm, but I think mine might be seeded a little deeper than that by this point. How is this a super power, you might wonder? For one, it seems to amuse the hell out of most of our doctors and nurses, so count that as a positive relationship builder. It also helps me adjust my perspective on a lot of seriously shitty things from seeing them as cosmically undeserved to instead just being part of some zany (admittedly crappy) reality.

Wow. I sound like a sort of miserable superhero, but if I'm one of countless trillions of the same thing, I suppose my powers needn't be too special or unique. I think I've seen every single mother I know manifest at least half of these, and even today, I think all six of these powers have come into play for me. I've still got the momentum to hover next to you, wrangle doctors, make polite conversation with nurses, keep your Dad as content as I can help him be, keep myself at least passably sane and clean, and manage to write. If other mothers survive this same kind of situation - but perhaps with more curveballs, other kids in tow, less of a support network, financial instability beyond ours, or worse - I am just daunted to be part of such a resplendent sorority.

Wednesday, February 22, 2012

Let's do the time warp again! ...and again! ...and again! ...and again...?

Everyone who told me I wouldn't have time to do anything as a new parent honestly had no idea what they were talking about. I have time to feed you, pump milk for you (which sucks ass - I am so sick of it, though it's not likely transitioning to nursing any time soon), change you, juggle family members who insist on visiting every damn day and getting full reports on every single thing that has happened to you since they saw you last, call and inform other family members of the same, feed myself, and - here's the kicker - help you through seemingly endless medical procedures or doctor visits in and among all the rest of that. Sometimes you need an echocardiogram, sometimes it's a blood draw, often a specialist needs to look you over, sometimes your nurse needs to change some monitoring device, occasionally a sensor sets off an alarm (despite you actually being completely fine), frequently a med students gets to "practice" listening to your heart or taking your blood pressure, and very, VERY often someone just wants to prod or poke at you for a few minutes. Hours out of every day are spent entertaining medical professionals whose take-away from their encounter with you is "he looks great!" Put simply, I will have unmeasurably MORE time on my hands once we get home, Hudson.

This is our twenty-sixth day at the hospital. I know how all your sensors work. I know where and when to get good food at the two eateries on-site. I know all the residents in two different units by name. I know which nurses are awesome and who needs extra prompting to do what we need. I know who will answer what questions (and who can't, or won't). I know how to monitor everything we need to monitor at home. I can even operate the computer that displays all your vital signs (and I probably shouldn't even have touched that thing - it probably costs more than I make in a year). Not to be too cocky, but between your Dad and me, you basically don't need a nurse for anything other than dispensing medications that are kept in a locked room.

Of course, I still love every second I get to spend with you, but knowing that someone could walk into your room at any moment to do who knows who, and that I have to leave you behind every's agonizing. The worst part through this whole process has been the lack of control. As happens in any complicated medical situation, most of the last three and a half weeks have been spent waiting for someone else to inform us of what is happening to or for you. From the moment you were born onward, we've been in limbo. It was a major victory when we were placed in charge of changing your diapers and feeding you (on someone else's proscribed schedule, granted), and a few nurses have even let me give you your medications. It is a major victory to be able to interact with you as parents rather than as vistors.

I feel like a clinical specimen of a new parent, and while all your doctors and nurses seem to have grown very fond of you (genuinely so, though I imagine they rarely have a chance to spend so much prolonged time with any given patient), it often feels like you are a glorified lab rat. Every day is a new series of experiments, procedures, pokes, prods, and data. While there are certainly new things on a given day, they are all blurring together so much that I rely on nurses, my phone, and the strategically-placed page-a-day calendars scattered around the hospital to know what day - and especially what day of the week - it is. At least your Dad has work to keep time vaguely relevant.

The biggest marker of time for me is hearing you cry. I will never be able to wipe out the excruciatingly clear memories of the two days when you have cried the most (the day last week when they wouldn't let you eat while they were figuring out your allergy, and yesterday, when you were awake for nearly twenty four hours because of the pain from an infection and then upwards of ten failed attempts to place an IV). Everything else just blurs. Of course it sucks that your first month of life has been spent in the hospital, but it also really sucks that so many milestones in that time have been lost in anesthesia, lost to circumstance, or simply misplaced in a haze of other less pleasant things. Sometime in the last four weeks, we've seen you smile for the first time, given you your first full bottle (which translates into the additional milestone of "we taught you to eat"), introduced you to many of the most important people in our lives, changed your diaper for the first time, held you for the first time (we at least have photos of that), and surely more...but I'll be damned if I can put my finger on any concrete memories of those events.

This time warp is definitely robbing us of a lot, Hudson. I know other parents spend less of their child's earliest days, weeks, or months with their kid than we have, but I still feel so massively deprived. Your Aunt Erin emailed me recently to tell me how glad she was that I am still angry. I must admit, this really got me thinking. My brain has actually started to glitch out and skip over details (like the fact that I asked the same doctor the exact same question about the exact same specific thing twice in under twenty-four hours, or entire conversations that I had with your Dad about weird people I saw in the cafeteria), but I am still really pissed off. The fight hasn't been sucked out of me yet, so even if I can't keep things in order particularly well, I'm still keeping track of enough to know when I need to get mad. This also hasn't done a damn thing to damage how I feel about you, which I have to say I'm very grateful for. I can imagine a lot of parents resenting their kids after so much medical drama and bullshit, but it's only made me love and want to fight even harder for you.

We just got even more time added to our stay - again - and this time, it's essentially the fault of having been in the hospital for so long. Your Dad is (justifiably) pissed off that his entire February break is being spent not just in time warp-ey limbo, but that we've missed the chance for him to spend his break helping us get acclimated to life at home. Every day that I pull into the parking garage, I'm falling down the same damn rabbit hole into some shitty alternate Wonderland with zero chance of any fun or magic, other than what you create. I can't believe how strong you are. I wish I was able to remember more specifics to impress the hell out you years after the fact, but know this: you've made it through a shit-ton of miserable crap, and you're only a month old today. 

Monday, February 20, 2012

This sleep deprivation thing is going to be rough.

Last night, your Dad and I spent a solid ten minutes walking around your room repeating the word "balls" sung to the tune of "Twinkle twinkle little star" while one of us held you and bopped you up and down to help you fall asleep.

Clearly we are going to be all sorts of exciting with the subtraction of sleep. Just thought you'd like to know.

Saturday, February 18, 2012

You SHOULD read this. (Or not...whatevs.)

I am officially swearing off the word "should." I had an interesting conversation with your Aunt Anna last week about this dangerous and crappy word, and she agreed 100% that there is basically no context in which this word ought to be used. It's not kind. It's not safe. It's a shitty, awful word.

My first really negative encounters with the Should-beast were in the earliest stages of pregnancy. People were telling me that I should not tell anyone I was pregnant until a certain amount of time had passed. Okay, fine; that's not entirely unreasonable. Once it was clear that you were here to stay, I rapidly lost track of all the other shoulds. According to a wide range of sources, I SHOULD have...

  • ...eaten a really specific diet, excluding a wide range of supposedly dangerous items. The only foods I didn't eat the whole time I was pregnant were deli meat, raw fish (except those two times I caved and ate a few pieces of tuna sushi), and an excess of caffeine (I cut back to one or maybe two cups of coffee a day, which was hardly a change). That's it.
  • ...journaled or written down EVERY SINGLE THING I FELT OR EXPERIENCED the entire time I was pregnant. Uh...I kept a blog AND consistently kept up with writing lesson, activities, professional resources, and teaching materials. 'Nuff said.
  • a bajillion books, ideally every single book written on the topic of pregnancy or childbirth. Okay, I did kind of overcompensate here by refusing to read ANYTHING after the first few books I read contained too many scare-tactic-ey rants about things that would kill me, you, or both of us, but I don't regret it. Now I'm taking carefully-solicited recommendations and researching books that will actually be helpful and positive.
  • ...bonded with every mother I know in a "Red Tent"-esque drum circle of feminine revelry, up to and including requesting and sharing every gory, grisly, and goopy detail of pregnancy with every single one of them. I'm not even responding to this.
There was more. I should have gone easier on myself, I should have eaten more leafy greens, I should have stopped working sooner, I should have gone with your Dad on a "babymoon" (which we would have afforded HOW?), I should have gone to more prenatal education classes...and you know what? I ultimately had a healthy, safe pregnancy, an insanely easy birth, and am suffering in no way from any of the choices I made. I SHOULD have ignored all the shoulds. 

Now that I have a baby in a tricky medical situation - however much it is resolving - the shoulds have escalated to a level that I can barely comprehend. Hudson: any time something in your life gets complicated and unpleasant, be discerning about who you listen to. Hell, be discerning about who you even let talk to you. Some of the people who have offered help and advice have been delightful; they've been warm, supportive, sensitive, and extremely kind not to push their opinions or ideas. Some people have even been so kind as to tell me that they are happy to wait until I ask for their opinions or ideas to hear to open their mouths. Other people suggest that I should make certain choices, but politely nod their heads or hum a little to themselves discontentedly if I don't follow their suggestion. The worst people just flat-out tell me I should act a certain way, then do their damndest to convince me to do so if I don't immediately agree. Here's a fun example.

Last week, your doctors recommended adding formula to the breast milk you were already eating as a way to get you more calories. You weren't putting on weight, and were having what I will delicately call unpleasant poos; my gut reaction was that you were lactose intolerant. I told everyone who would listen about how uncomfortable you were, how gross your poops were, and how suspicious I was of milk-based formula...and I was more or less brushed off. One nurse even had the gall to tell me "that's normal baby behavior."'re not a normal baby. Our frustrations increased, and we kept having days added to your hospital stay as you failed to gain weight. Doctors kept promising "you'll be home tomorrow!" when there was no chance of our cardiologists letting you go without a consistent trend of weight gain. Then you ended up back in the PICU after a hideous allergic I suspected...and now we're set back another few days reteaching you how to eat and dealing with nurses who aren't willing to give you all the time you need to finish eating as much as you need to. Your Dad and I are furious.

Of course, nothing was helped by the handful of people who have proceeded to tell me that I should have been a "stronger advocate for your needs" and should have been more aggressive about my allergy theory and then forced your doctors to let you eat something rather than take 24 hours off eating. You know what? No matter how loudly I spoke up, no one would have made any changes to your diet until they had concrete proof that what we were trying actually wasn't working. As much as it was agonizing, I know that your food-free day was a necessary evil. Would these should-sayers have expected me to opt out of your surgery because it was going to cause you pain? Should I have declined the IV they put you on to keep you hydrated? What about the blood draws that helped confirm that no, there is nothing systemically wrong with you except for an allergy?

Being told that I should have done something different - implying that the choices I made were patently wrong - is unbearably insulting, especially since I was ultimately complying with a medical plan that is not only placing your needs above everything else, but which we really couldn't have affected anyhow. The only thing I should have done in this situation - and others, which I have been told I should have handled differently - is ask good questions to be sure that our doctors were being clear and open with us. (FYI: your Dad and I both did that, so we've done our should-ly duty.)

I've hit my boiling point. The word "should" is officially banned. Anyone who wants to tell us something that they would like to see us do is welcome to make a suggestion, but the next person who tells me something that I should do is going to be politely greeted with the following:

"The only thing I SHOULD do is take the best possible care of my son. You SHOULD expect nothing else."

We're back up on the pediatric floor today (in the largest room we've had yet, with a kind of cool view of the old hospital building - which means that we've now had a view out of every side of the hospital), you're eating like a champ, and everyone is expecting us to be home soon. Oh, I'm going to use it one last time: we SHOULD be.

Friday, February 17, 2012

Enough already.

I just squirted apple juice all over myself trying to open a little foil-covered cup of the stuff, and all I could do was sigh and brush it off. At this point...whatever.

Yesterday morning, while trying to sleep through the cats scratching at the bedroom door (despite the fact that I had already fed them an hour earlier), I was woken by a phone call from the nurse who took care of you last night. We've only gotten one other phone call from the hospital the whole time you've been here, which is pretty awesome, but this was just the shit cherry on the crap sundae. Nothing disastrous: just poopy. Actually, that's a really accurate metaphor, since the call was about the fact that you have not been digesting well - at all: it was ugly - and that as a precaution, you were going to be moved back down the PICU for testing and closer observation. I arrived at the hospital not five minutes before they moved you; they'd already done us the courtesy of emptying the fridge and organizing all the other stuff in the room, so I didn't even get a chance to talk to any doctors or anything before you were whisked back downstairs. My coffee hadn't started working yet. I was pissed.

While I certainly don't begrudge extreme caution, I fucking hate the PICU. Sure, the doctors are insanely good (both as medical professionals and as communicators), and the nurses are quite literally the best in the hospital, but it just sucks here. I've complained about the rooms (or rather, the glass boxes that are completely exposed to an insanely busy work station in the center of the unit), and the relative tragedy of the hall we have to walk down is just draining. I feel like a laboratory specimen of a parent, and because of the anal-retentive monitoring that is standard down here, instead of just three little adhesive dots for a heart monitor and your oxygen monitoring glowing red foot sensor, you've got five huge sensor leads with crappily-clustered cords, huge patches on your head and back checking your oxygen saturation in your brain and kidneys, the sensor on your foot, an IV in your arm (which is a standard requisite in the ICU, regardless of what shape you're in or what's being done to you - it's not even hooked up to anything now), and bandages from the several different blood draws they've needed to do. Put simply, you look really sick and damaged despite being in better shape than you were in two days ago when you were hooked up to nearly nothing.

We should be moving back to the pediatric floor today. Up there, we have a real room (with a real door and real windows!), a private bathroom, fridge access, unlimited drinks that we can get for ourselves, and places to sit. How sad is it that even sitting seems like a luxury? Better than all of that, we get more or less full access to YOU there, whereas here, picking you up is like detangling an old VCR from an entertainment center. Yesterday was a special kind of hell because you are such a snuggly little beast. When you're upset, whatever it is you're upset about, picking you up and either moving around or just smooshing you calms you right down. Because you had been having such a tough time digesting, your doctors opted to give you twenty-four hours off eating to give your system time to recover. This meant that you were completely miserable, hungry, and inconsolable...and picking you up wasn't really an option.

Without question or doubt, the day of your surgery was pretty much the worst day of my life, but yesterday was about as bad as things get when they aren't life-threatening. You were so unhappy, and there was absolutely nothing I could do to make it better. Hearing you crying - stopping only to whimper in between when you were catching your breath - and seeing you squirming and reaching for something to physically hurt me. Your doctors had rationally and credibly explained why they were doing what they were doing, but I still wanted to punch someone in the face for putting you through a day like that. It's over now. You're passed out just a few feet from me, tummy full, and while I'm sure you're all manner of pissed off that you're covered with sticky, uncomfortable junk, at least you're legitimately healthy enough to justify being pissed off. Hudson, we should be really close to the finish line. Once you can show your doctors that you can put on some weight, we should be good to go. No more poking, prodding, sticky crap, or people butting in every half hour to check something.

Saturday, February 4, 2012

Do cyborg babies dream of intubated sheep?

Especially when you were completely conked out, I couldn't help but wonder what was going through your tiny little mind. With only a few days of consciousness, but months of ambient potential sentience in utero, what information do you have with which to construct dreams? Clearly something is happening in your brain, because your hands and legs twitch around, you shrug and wiggle, and sometimes you even get pretty distinct expressions of some kind of emotion, but is it dreaming or just biomechanics in action?

The internet (which we all know to be a frequently crappy source for credentialed, factual information) has many opinions on this matter. I explored some parenting websites this morning to get some opinions. One - which boasted a massive banner advertising Tyson breaded chicken products - suggested that infants do dream, but only in images. Another - which is moderated by "experienced parents," a title that means about as much as "hobbyist brain surgeons" when you consider the alleged credentials and potential experience of the claimants - purports the theory that infants dream far more (and more vividly) than adults, or even other children. One of the most heavily-trafficked parenting sites is dubious that really teeny babies even dream at all; if they do, this site postulates that infant dreams are silent and probably not about anything too specific. Suffice to say, I'm left wondering.

Hudson, you've spent so much time unconscious since you popped out that I can't imagine that time was spent simply executing vital functions. Maybe I'm romanticizing because I don't like the idea of you spending the bulk of your first week of life actually doing nothing. With that idealistic view, though, comes the questions of what your dreams would be. You've had so much time to absorb sounds and vibrations that there must be something that processes through your brain. I've personally only seen your eyes open for a cumulative two hours or so of your life, so you've only seen so much of me and even less of your Dad. I know you've been more awake some of the time we haven't been at the hospital in the last few days, and I'm sure you must have been awake at all before your surgery, but that hasn't been a lot of time no matter how you stack it. Given how little visual data you've got stored up at this point, do your dreams have slideshow flickers of us and a slew of nurses and doctors? When you close your eyes, do you just continue to see your hospital room?

On the other hand, there's the theory of the collective subconscious. Human beings instinctively know to fear wolves, snakes, and water-dwelling nasties even if we have never seen them before; we're hardwired to know that these things are bad. At roughly the same time in history on every continent, people built pyramidal structures that were meant to somehow elevate either man or man's spiritual presence to the heavens. Did we send a letter describing our awesome, structurally approachable idea to one another? Heck no. Many believe that the idea was rooted somewhere in the human brain, and that it was bound to come to fruition eventually regardless of context. I absolutely believe that there is some data already sitting there in our brains when we're born (even beforehand), so it would make sense for you to have something to dream about, even if only architecture and instinctual knowledge.

There's also the whole past life notion. That would give you so much different information to play with that I can't imagine there would be any limit to what you dreamed. It's been very hard to get a sense of your personality with the limited time we've had to see you really in action, but if this theory holds any water, who were you? You don't seem to have bad dreams, so I have to imagine you were someone peaceful and reasonably happy. I'd love to think that you carry bits of your Dad and my ancestors around with you somehow (other than just genetics: sorry if your hair doesn't make it), given that for the most part they have been genuinely good and loving people. Maybe your dreams are last flickers of experiences that you won't consciously remember, but that your former self or selves wanted to impart to you before instinctual preoccupations took over your consciousness.

I was listening to the most recent Guster album ("Easy Wonderful," which made up the bulk of the concert I took us to with your Aunt Katie and Aunt Erin when you were only a few months into existence) in the car this morning, and can't help but wonder if you'll respond to that music when you hear it now. Given that I've played that album half to death, could that be part of the soundtrack to your dreams? You clearly respond to my Dad and my voices, so if your dreams do have some audio component, is it us complaining about school or laughing about dumb things we find on the internet?

Right now, your Dad and I are sitting in the waiting room down the hall from the PICU while your breathing tube is taken out. This is a really good, fairly big step, so your Dad feels entirely comfortable just playing Minecraft to pass the time, and I've let myself get lost in thought over a completely normal baby thing. I can't tell you how wonderful it is to actually be bored here. The attending physician on call for the rest of the week insisted that she and all the nurses are going to try to adopt you because you are so cute and sweet, so we'll clearly have to head back down soon to fight her off and reclaim you. Until then, I'm sure you're awake and likely protesting what they're doing to you (even though it's very good), but when you nod off again, I wonder if you'll have some residual instinctive knowledge of barnyard critters to help you sleep...?

Wednesday, February 1, 2012

I can speak the lingo. (Kinda?)

We're over forty-eight hours from your surgery, and I've got to tell you, Hud, I was ill-prepared for this whole experience. Emotionally, I don't think there's anything your Dad or I could have done to brace ourselves, but we're managing pretty well considering. Psychologically, I think we're both keeping it thoroughly together without repressing or avoiding anything; we're talking a lot, processing details together, and collectively working to stay positive and grounded in reality. Physically, I don't think anyone expected me to bounce back from childbirth as quickly or easily as I did, but neither your Dad nor I have had experience with the hospital waiting game. For spending the bulk of our days either sitting in one place in the cafeteria, walking down the same four hallways to and from your room, standing next to your little bed-thingy, or breastpumping (me, not your Dad), we end the day pretty thoroughly wiped out. Like, hit the couch, fuzz out of focus, and wake up a few hours later to drag our sorry asses to bed wiped out. The fact that we're looking at potentially another week of exactly this - you unconscious and being supported by drugs, people, and machines while your heart gets stronger - is just daunting. When you're at least awake, I feel like it will be easier to feel like being here has purpose for you, not just us. Of course, we've been assured (and reassured, and re-reassured) that our presence is good for you - and I know that it is - but we are spending a lot of time just chatting with medical staff and camping out in the cafeteria. We're both getting a LOT of reading and writing done.

Another thing I wasn't prepared for when we came in to the hospital was the sheer volume of medical jargon we'd be hearing all the time. I mean all the time. Constantly. I totally understand how and why so many people get overwhelmed, frustrated, and ultimately feel either helpless or furious with medical professionals in hospitals, because only the most compassionate nurses know how to (or bother to) translate the jibberish they spew into normal-person speak. We've now listened to rounds twice, and now I know that this is going to be like learning Finnish...or maybe Klingon...and Elven...or some obscure dialect that blends the two...Hudson, I'm not good with languages. This is a whole new sort of challenge.

Unfortunately, even second-hand recountings of my Dad's medical tribulations have given me a working understanding of the logistics of a lot of hospital procedures, many of the most common drugs given to post-op patients or those who need systemic support, the vocabulary doctors use to abbreviate and code data...erm...other stuff? Honestly, my percentage of having any clue what they're saying is currently grounded with action verbs. Words like "wean," "regulated," and "stabilized" are generally good. "Decrease" and "increase" can be good or bad depending on the circumstances, so those are a little tricky. "Failing" or "not tolerating" are clearly bad, but we haven't heard the latter in a while, and we've never heard the former (and never want to). I could list off a few of the medications you're on, and I think I could identify all the different tubes and lines and such that they've got going in or out of you, but I realized this morning that I don't even know the technical terms for everything that's wrong with your heart. I heard something new listed off during rounds and went "holy crap, he's got THAT too?!?" (Granted, your Dad assured me that had been identified right after you were born, so it wasn't new news, just something I'd missed in the onslaught.)

I don't want to be one of those people who just tells doctors to dumb it down and put it into layman's terms, especially knowing that we're going to go through this whole hellish process two more times, to say nothing of uncountable appointments and check-ins throughout the course of your life. I feel like this  whole experience is akin to moving to a foreign country. We've essentially taken up residence somewhere that has a large number of English speakers, so we could theoretically make do not learning the native tongue, but we'll be indefinitely handicapped if we don't. We can get our basic needs met, even engage in some conversations with locals, but to access any more nuanced information requires vocabulary and syntax we've yet to acquire. I won't be a tourist here, and while I don't anticipate fluency any time soon, I'll be damned if I smile blithely while the local authorities talk over my head (however well-intentioned they might be).

For now, I'm still relying on nurses to translate for me after I overhear doctors ramble at one another, but it's a baby step towards actual comprehension. I think your Dad is potentially absorbing more than I am, but he's starting with a little less background knowledge, so I imagine we're somewhere around the same level of understanding, overall. I really do hold to the adage "...and knowing is half the battle," so the more we actually know (not just flummox through kind of, sort of understanding), the better. I will always wish that this wasn't what we had to deal with, but Hudson, we do both love a challenge.