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Mermer

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The city of Norfolk is a little obsessed with mermaids. Like Austin with their painted cows or Cleveland’s guitars, decorated mermaid statues show up in random places throughout the city. A lot of places around town also use mermaids in their decoration, including our house of Ron. Invariably the mermaid is in this position:

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Our son’s hospital’s decor is ocean-themed, but for some reason there are no mermaids. At first I thought because they wanted to be a little more science-based, but then I looked at the inscription around the statue of children playing in front of the main entrance, which is from Peter Pan: “‘I say, how do you fly?’ ‘You just think lovely wonderful thoughts and they lift you up in the air.’”

Um, no, Peter. Not on this planet. On this planet there is no pixie dust, and there are no mermaids, and we use science to treat illness, science to heal wounds, to save babies, to build hospitals, and also by the way, to fucking fly.

Maybe the lack of mermaids in the hospital is just a licensing thing.

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Last week a nurse was doing a routine chest exam on Alex with the stethoscope when she noticed a whooshing noise. She raised her head and without removing the prongs from her ears told us she heard a slight murmur in his heart. She said she suspected a PDA, which is excessively common among preterm births, like three out of four. I suspected another bad day was ready to take its turn. In most full-term newborns, the DA (Ductus Arteriosus), a connecting vessel between the aorta and the pulmonary artery, which in utero helps reroute oxygenated blood more efficiently, will close and sever after two or three days post-birth. Alex’s hasn’t closed yet. It remains Patent. It remains open.

An echocardiogram the next morning confirmed this. Also it showed a PFO (Patent Foramen Ovale), so actually my baby has another hole in his heart, but no one is concerned about this one. About 25% of all humans have this condition, the PFO, and most don’t know it. It’s a flap, not a vessel, not a shunt or a ductus, just a flap-covered hole between the left and right atria that exists for similar reasons as the DA, to let blood go in weird directions during fetal development. It too is supposed to close after birth. But the side effects of this hole tend to be minimal if any. So it’s all eyes on the PDA.

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In utero, the DA exists to help steal blood from the lungs (which don’t need very much until there’s breathing to be done) and get more oxygenated blood to the aorta, and therefore the rest of the body. After birth, when the lungs are functioning, the pulmonary artery changes teams. The pressure drops, and the lungs begin thirsting for deoxygenated blood to refresh, which is the pulmonary artery’s job to provide. But the aorta now has a higher pressure, so if the DA is still open the blood flows the other way, dumping oxygenated blood back into the lungs. The lungs have to compensate to deal with the extra blood, and the heart has to compensate to send enough blood everywhere else. Extra work all around, making everybody tired, and cranky. Cranky like chronic lung disease. Cranky like heart failure.

We do not like the PDA.

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I have held my child twice now. The first time I was too shell-shocked to say much of anything to him. I just concentrated on keeping this kitten-sized human motionless and warm beneath the collar of my t-shirt and the receiving blanket and both my careful hands. There isn’t enough room for both of my hands, though, so it turns into holding one hand up with the other hand.

Today I held him for almost two hours. I had been looking forward to this for days, so when I got him I clung to him and cupped him to my chest and whispered and sang and murmured affirmations into his floppy ear. Sometimes I took one hand down, held my 550 gram child entirely in one palm, felt him squirm, his fingers tangled in my chest hair, straining to lift his head up and look around the place. He can do it, too. I wasn’t exactly flat on my back or anything, but he’s strong enough to best gravity and lift his head away from its resting place, if he wants to. I am achingly proud of this child.

I had been planning on holding him two days ago, but he’d had a bad night, they said when we arrived. His ventilator settings had been increased for the first time in four days, and they’ve been going up ever since, his lungs needing more and more support. He is on the verge of returning to the jet ventilator, which does the work for them entirely.

On the bright side, his antibiotic course has been successful thus far to the point that he’s off the contact protocol. No more paper gowns. And as I’ve mentioned, they did let me hold him today. So it’s not all bad news.

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What to do about a PDA.

Well, first you can do nothing. That’s what we tried. His numbers were good, and recent studies haven’t been able to find a significant difference in long term outcomes for rushing to close every PDA you find. For about a week or so it seemed to be going fine. Then came the turn, so now it’s time to do something.

For years they’ve been using ibuprofen

(to block cyclooxygenase from reacting with arichidonic acid to form synthetase [PGH2] which leads to the prostaglandin PGE2 which is known to play a role in dilation of the shunt) 

(to block cyclooxygenase from reacting with arichidonic acid to form synthetase [PGH2] which leads to the prostaglandin PGE2 which is known to play a role in dilation of the shunt) 

to chemically treat the PDA and force it to close, but ibuprofen and its like drugs come with gastrointestinal risks, among a few other undesirable side effects. More recently, they’ve started using Tylenol

(which apparently blew everyone’s minds because it’s virtually side-effect free and has the same outcomes on the PGE2 as ibuprofen, even though it doesn’t block cyclooxygenase at all, but it turns out the PGH2 needs peroxidase as well as cyclooxygenase to form PGE2 and acetaminophen blocks peroxidase instead [they think]) 

(which apparently blew everyone’s minds because it’s virtually side-effect free and has the same outcomes on the PGE2 as ibuprofen, even though it doesn’t block cyclooxygenase at all, but it turns out the PGH2 needs peroxidase as well as cyclooxygenase to form PGE2 and acetaminophen blocks peroxidase instead [they think]) 

so universally that our doctors kept assuming Alex was put on Tylenol already as soon as the PDA was discovered. When the PDA took a turn, in fact, the doctor of the day immediately said our next step was surgical intervention. I was like, Whoa, hey, are we too late for trying the Tylenol?

(Because the efficacy of acetaminophen is known to diminish the longer post-birth the drug is administered, in fact in infants >37 weeks gestation age the window is like three days after birth if you want to use Tylenol on the kid with any effect, but some studies have suggested micropremies will continue to respond with minimal decreases in outcomes, only something like 10% lower, even after 21 days or more, although one extremely depressing study of about 35 infants <28 weeks gestation said it found 0% PDA closure with post-14 day administration of acetaminophen, although half of these were fourteen days late only because they tried the ibuprofen method on them first, which who knows what that fucked-up drug could’ve done to prevent the miracle Tylenol from working correctly) 

(Because the efficacy of acetaminophen is known to diminish the longer post-birth the drug is administered, in fact in infants >37 weeks gestation age the window is like three days after birth if you want to use Tylenol on the kid with any effect, but some studies have suggested micropremies will continue to respond with minimal decreases in outcomes, only something like 10% lower, even after 21 days or more, although one extremely depressing study of about 35 infants <28 weeks gestation said it found 0% PDA closure with post-14 day administration of acetaminophen, although half of these were fourteen days late only because they tried the ibuprofen method on them first, which who knows what that fucked-up drug could’ve done to prevent the miracle Tylenol from working correctly) 

He said, Yes, unfortunately. Then he looked around at his residents. Wait, did he have Tylenol yet?

After the results of Alex’s second echocardiogram came back yesterday, revealing a 2.1 mm (medium to large) shunt still open between the aorta and the pulmonary artery, they started him on the Tylenol. Five days after they could have. If it doesn’t work, and his symptoms don’t improve, they’ll want to go in surgically to close the shunt.

(Surgery meaning a video-assisted thoracoscopic, or possibly an open ligation, requiring a left posterior lateral thoracotomy, which I’m too afraid to look up what that entails, but possible undesirable outcomes of surgery [in infants &gt;28 weeks gestation age (many of whom were treated with indomethacin first [which was also previously a common prescription alongside ibuprofen and has similar rates of gastrointestinal side effects, etc., before everybody started using acetaminophen])] include increased risks of brochopulmonary dysplasia [BPD, or chronic lung disease, CLD], neurosensory impairment, or severe retinopathy of prematurity [and in infants with a gestation age less than 28 weeks (as we know young Alex to be), the additional risks of “pneumothorax, infection, laryngeal-nerve paralysis, erroneous closure of the phrenic nerve or major blood vessels other than the DA, and respiratory compromise,” along with an even greater probability of CLD, which does not take into account the morbidity associated with infants deemed to have passed away due to the vague postmortem diagnosis of “immature gestation”]) 

(Surgery meaning a video-assisted thoracoscopic, or possibly an open ligation, requiring a left posterior lateral thoracotomy, which I’m too afraid to look up what that entails, but possible undesirable outcomes of surgery [in infants >28 weeks gestation age (many of whom were treated with indomethacin first [which was also previously a common prescription alongside ibuprofen and has similar rates of gastrointestinal side effects, etc., before everybody started using acetaminophen])] include increased risks of brochopulmonary dysplasia [BPD, or chronic lung disease, CLD], neurosensory impairment, or severe retinopathy of prematurity [and in infants with a gestation age less than 28 weeks (as we know young Alex to be), the additional risks of “pneumothorax, infection, laryngeal-nerve paralysis, erroneous closure of the phrenic nerve or major blood vessels other than the DA, and respiratory compromise,” along with an even greater probability of CLD, which does not take into account the morbidity associated with infants deemed to have passed away due to the vague postmortem diagnosis of “immature gestation”]) 

As frustrating as it is to have the hindsight now, I understand why they didn’t immediately prescribe the acetaminophen. If it’s not broke, don’t give it Tylenol. His blood gases were good. Golden, even. They had him on the fast track to jump to the next lower level of respirator, which is just a tube providing bonus oxygen through the nostrils. No more intubation, no more plastic bar holding it in place and blocking most of the lower half of his pretty face in photos. I could almost see it. His whole face.

Which isn’t to say he won’t get there eventually. His numbers aren’t so great anymore, but he’s looking good. He passes the eye test. And he’s strong as ever. Anytime you place a cold stethoscope on his chest, or poke his belly in a way he doesn’t appreciate, if you don’t have him all clamped down then he’ll come out swinging, karate-chopping, legs flung skyward and gyrating, his expression the definition of cross. All day today he was jumping, starting, twitching as though with hiccups but absent the regularity, testing his restraints, trying to make himself more comfortable, I thought. We’ve come to associate his blood-gas desaturation episodes (quickly dropping from acceptable levels in the 90s to the 70s or 60s) with him being fussy or uncomfortable, but today, towards the end, it started to seem to me like he could feel one of these desat episodes coming on and would fuss in response to it, trying to kick and punch his way into a position that would let him breathe the good air again. Suctioning his lungs doesn’t always pull out fluid, but I get the feeling it’s a hot mess in there and sometimes he’s got to shake himself up like a snow globe to free up some of those hungry alveoli and let them absorb oxygen again. While I was holding him, I did my feeble best to help, giving him one-finger pats on the back, as though he could burp, as though he’s ever had food not placed directly into his stomach with a tube. 

He is three weeks and three days old and has yet to be allowed to completely close his mouth. There’s always been plastic in the way. For the duration of his life. 

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He will get better. I have no doubt. It’s just a phase, a stage, a small portion of the whole grand process, but a stage it pains me to watch, and makes me sad in ways I’m unfamiliar with. And I am fairly familiar with sadness.

I just looked up what Norfolk’s deal with mermaids is. Turns out, it dates back all the way to the year 2002 A.D., when the city purchased 130 identical cast-bronze mermaid sculptures left over from a 1999 event called the “Mermaid Parade,” about which pertinent details do not exist, and then convinced over 80 local businesses to buy one for themselves and paint it funny colors.

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...Cool.

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6 Comments

Smaller

I’ve been trying to find ways to communicate how not-large Alex really is. It’s a difficult thing to understand until you see him in real life. Photos don’t work. He fills the frame the same as bigger babies. Like with Tom Cruise, it’s all a matter of perspective.

*actual size

*actual size

I could hold the camera further back, but then you wouldn’t have a very good portrait of the child himself, and anyway it wouldn’t help much unless you knew the size of the other stuff in the picture. Sometimes there’s hands in the photos, but adult human hands vary in size so much that they don’t offer a great point of reference. So instead of zooming out, I’ve started zooming in.

After staring at him for two-plus weeks, his head, honestly, looks like a normal baby head to me, now. I don’t know how much larger it will actually be when his due date arrives. I can look at the other, larger babies in the room for comparison, but it seems rude to gape at babies not mine, and anyway as soon as I turn back to Alex I’ve forgotten their forms. Maybe I can steal one for a quick side-by-side and put em back before anyone notices.

Only the features remind me of how little he really is. His ears are so small they don’t have any cartilage in them yet. They’re the answer to “What if all of my bones suddenly disappeared and I collapsed into a human rug of muscle and skin?” Except there’s no muscle, either. Just skin. You can pretend with your own ears, to a degree. You can crumple one up like a Kleenex and while you hold it there you can laugh at how silly it looks in the mirror. But when you let go, it returns to shape. Alex’s ears don’t. If the nurses don’t take care to check them when his head gets turned (and they often don’t, seeing as how the main focus is keeping him alive), sometimes the ear gets folded under, which then isn’t discovered until the next turn, his poor ear bent in half like a taco or rolled up like a taquito.

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It’s been very difficult to get on film his translucent hair, but it’s all over him. His head, his arms and legs, his eyelashes, and his eyebrows, which don’t really have a distinct stopping point on his forehead until they merge with the rest of the hair on his dome. Which I think is a fetal trait, one that will eventually go away when he comes of age, like reverse puberty. Otherwise without a purposeful haircut his forehead will never see the light of day.

More demonstrative of his actual size than his head, I think, are his hands and feet. I’ve posted pictures of him holding onto our fingers before, but again, adult hands aren’t great at communicating actual size. Until I caught this one:

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That’s my wife’s finger. I think she has perfectly average-sized hands, if that helps, but what do I know. More to the point, in this photo you can see the folds and ridges of her fingerprint. By my rough measurement, his widest finger (thumb) is about as wide as seven fingerprint ridges. Look at your own finger, now. Count seven. That’s a thumb.

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It’s the feet, however, that you have to look at closely—literally—to see how tiny he actually is. Because really, all newborn babies can adorably grasp a finger and make you go “Awwww how tiny is he!” But I get the feeling somewhere between weeks 25 and 40, the feet go through a massive growth spurt, because his have not, yet. For perspective, here’s a normal pair:

Good lord, tubbo! Did your mother skip the breastmilk and move straight to bacon grease?! 

Good lord, tubbo! Did your mother skip the breastmilk and move straight to bacon grease?! 

Which leads me to believe a normal baby foot is about two fingers wide. Alex, of course, is nowhere close to that mark. For days I’ve been trying to take a picture that really demonstrates the uncanny tiny-ness of Alex’s otherwise normal-looking trotters, with unsatisfying results.

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Finally I threw in the towel and said let’s just measure the damn thing. So if you’re shoe shopping for little A in the near future, he currently wears a size one-and-a-half... inches.

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Of course, even being right there next to him doesn’t tell the full story. I haven’t gotten to hold him yet, not properly, but today I did get to pick him up so we could weigh him. Of course, I couldn’t take a photo of this happening, so you’ll just have to take my word.

Artist’s rendering.

Artist’s rendering.

He’s not nothing. That’s what was surprising. Using two hands and awkwardly reaching over the plastic rim of an Isolette incubator, applying very gentle pressure but also guarding against an unexpected wiggle so as not to drop him, and meanwhile trying to keep his overall corpus within the correct distance relative to the breathing tubes which the nurse on the other side is lifting and holding, his weight felt like weight, not the puff of air it’s so easy to convince myself he is. He’s got bones in him. Which I knew, I do lift his legs and change his diapers and such now, but still. You can feel it all better when you’re holding the whole package.

 “...ladies.”

 “...ladies.”

But he’s also not a baby yet. Not an infant, at least, not in the body. I’ve held my share of newborns and this was not like that. More like someone had glued a cue ball and some mini corn dogs to a hot water bottle the size of my wallet. Which I am too tired to Photoshop for you right now.

You know what Photoshop used to be called? Imagination. Give it a shot. 

You know what Photoshop used to be called? Imagination. Give it a shot. 

Because he’s not supposed to be here, yet. I think this is what I want so badly for you all to understand. His skin is real skin, but only because he was born and that’s what skin does no matter when you’re born. The rest of him is still fetus, doing its best to survive in a world he’s not yet built for, breathing through lungs only meant to contain amniotic fluid, experiencing the full gravity of the earth instead of still floating in liquidy support, opening his eyes and seeing raw light. 

I don’t think I want you to know this, to understand this, because I am afraid for him. At least not entirely because of that. Yes, there are perils of untold varieties that could undo the tiny grasp he’s got on this life, up to and including a three-inch drop onto a hard surface, or perhaps too vigorous a sneeze. But it is also because of this built-in fragility that his strength is so remarkable. I want you to know how regularly I am amazed at the force of his kicks, or his grips. And most remarkable of all is his determination in the face of these obstacles. I will open my eyes now, he says. I will look into the light. I want to know things, and once I know them, to have them go my way. I want to breathe over my ventilator, I want to breathe like people do. I want to eat, give me that food, I’m ready, now give me some more, I want to feel sated, I want to comprehend.  

Also he wants to sleep. So as often as we can stand, we let him.  Now I should do the same. Goodnight, all. Thank you again for all your love and encouragement.

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Sucker

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I am forever looking at numbers. Mainly I am looking at heart rates, blood-oxygen levels, blood pressures and O2 percentages from his ventilator. When I get tired of looking at numbers I look at narwhals, or if he’s fussy or if they’re working on him and the blankie curtain is pulled back, I look at eyes, I count toes, I count yawns and blinks, and all this counting reminds me of numbers, and I go back to looking at his numbers again.

As part of my suddenly necessary wardrobe additions, my wife has taken to expanding my arsenal of daddy clothes. I now have a Papa bear sweatshirt, a Papa bear t-shirt, and this fun guy:

Pulse 152, SpO2 98 (high), blood pressure 43, O2 23% 

Pulse 152, SpO2 98 (high), blood pressure 43, O2 23% 

I took a turn by myself while my wife caught up on her sleep, yesterday. We do a lot of the hands-on care when we’re here, now, so when it was time I changed his diaper and took his temperature and then prepared to do the mouth swab. Sometimes we swab with breast milk, sometimes with saline water just for cleaning. This was to be a cleaning. He was fussy during the diaper and the temperature, as per usual, but the moment I got the wet cotton swab between his lips, he pursed and latched on, and his body froze, and his eyebrows relaxed, and for a moment he rejected all notions of his science project existence and was just a baby. Nothing otherwise. Just my baby child, calm and happy, actually happy and not just momentarily unperturbed. I tried to move the swab around to clean his breathing tube and moisten his lips and because he is barely a pound of person he couldn’t stop me but at every opportunity his mouth found purchase again. I swabbed for too long, perhaps. It was something he wanted that I could give to him and make him happy and so I did it as long as I thought wise. That may be the happiest I’ve ever been.

There are other babies in here, in this room. The hospital is remodeling the NICU, rebuilding it actually, there’s construction currently in the works that will give each baby their own room, but right now there are eight pods per bay. So even though Alex’s voice is still blocked by artificial plumbing, I am getting used to being around baby cries. The baby next to us has tiny little whimpers for cries, which I actually didn’t know were cries until I turned to her yesterday after the noise she was making seemed to intensify and saw tears. Her grandma told me today that she’s only got one lung. So that makes sense.

Pulse 158, SpO2 99 (still high), blood pressure 43, O2 23% 

Pulse 158, SpO2 99 (still high), blood pressure 43, O2 23% 

In other news, another number: zero. Alex’s blood culture has shown zero bacteria growth after almost 36 hours. So the antibiotics appear to be having the desired effect. This is good because yesterday morning, an overall down day despite my happiest moment ever, they told us Alex’s particular bacteria is “not showing sensitivity” to all of the expected antibiotics it should. Meaning the bacteria has developed a resistance to some of its poisons. Good news is, some of them are still working, but hearing your son has a mutating enemy inside him sounds like sci-fi/horror, artificial intelligence, a mercuric terminator sent from the future. It doesn’t sit well. In any case, this development means everyone who even stands next to Alex now has to wear the surgical gown, and everyone not his parents has to wear surgical gloves. I even see some of the nurses wear the surgical face mask for some of their interactions with him. I don’t see how this change can help with an infection he already has, but the overall effect is this environment is much more E.T. than it used to be.

The other sucky part of yesterday: during Alex’s head turn—which I was looking forward to because his head was to the left in the morning, but our chairs are on his right, so if we want to sit with him we can’t see his eyes—there was an issue. His numbers started to drop almost immediately after his head was reset.

The head turn takes two people, usually a nurse and someone from respiratory, because the head turn jostles the intubation and you want someone who knows that system backwards to be here for that. The nurse told me later she noticed his color changing, which she called both “pale” and “purple” during separate recounts, and she was quick to call the issue to the respiratory helper’s attention. Something was blocking the tube. I was standing there, two feet away, watching, motionless, my hands up and away from my body because I’d just sanitized them again in case I wanted to reach in and calm him after the head turn. The respiratory therapist switched on the bedside respirator, the “Infant T-Piece Resuscitator,” which title has all the required markings to belong in my specific uncanny nightmares, and the nurse said something about “going in sterile,” and she pulled out some secret gloves wrapped in secret paper and carefully put them on while the respiratory therapist switched tube connections with impressive speed and familiarity.

And then started giving Alex air manually.

I still didn’t move. In fact I think I managed to not move even more. I was statuesque. The gradient impossibility “really still.” This is what they used to refer to on the hit television show E.R. as “bagging him.” It’s how you knew shit was getting real. In this case there was no bag. The resuscitator’s plastic tube basically had a continual air flow that changed according to whether or not her thumb was over the exhaust valve. So with a practiced, almost absent-minded rhythm, her right thumb gave him air and ushered his oxygenation levels back upward while her left hand scurried about preparing other things for the nurse to run conventional suction through his intubation, conventional meaning by hand, as close to the source as possible, meaning right at his mouth, the stiff plunging rod sent deep into his chest and pulled out again, clearing the road, once and twice and back up damp into her fingers, no wonder she wanted the gradiently impossible extra-sterile gloves.

Pulse 151, SpO2 100 (high), blood pressure 48, O2 28%, we can probably knock that O2 back down a bit, donyathink. 

Pulse 151, SpO2 100 (high), blood pressure 48, O2 28%, we can probably knock that O2 back down a bit, donyathink. 

After the suction, they kept giving him manual air while they tested his chest tube to make sure it was still in where it needed to be. For a half a second, listening in, it sounded like something was wrong because the color indicator they were looking for didn’t come up immediately, but then it did, it was yellow, which was good, which meant they could hook him back up to the regular respirator, and they did so. He was passively still throughout most of this. There was so much motion around him I almost didn’t notice but when it was all done and he was hooked back up normally and we were waiting on his levels to settle back into a normal rhythm (which they didn’t for a while because he was trying to breathe over his machinery, his tiny baby belly blowing up and deflating at a recognizable breathing rhythm, not the seven pulses per second his lungs are supposed to be getting, so they gave him some fentanyl, which I was fine with, he deserved a druggy respite after all that), he still wasn’t really moving. But then I noticed he was. Little hand flutters that slowed as the fentanyl kicked in (a karate-type move which I believe is entitled “the tired butterfly”), occasional ankle rotations and mild leg stretches, not his usual woken repertoire, but it was enough. I thought maybe it was enough.

I cried a little bit, when the nurses weren’t looking, after the nurse explained to me what exactly just happened, why this was an “event.” I sat down on a chair and thought about how no one would probably tell my wife about this if I didn’t tell my wife about this, and I felt alone, and sad, and overwhelmed, and afraid. Then I went outside and talked to my mom on the phone and felt better, and then came back upstairs again.  

Later on, back in our room at Ronald’s House, I sort of playfully crawled onto the bed to cuddle my wife and draped an arm across her lap and collapsed with my face buried in pillow. Sleep caught me unawares.

But hey. That was yesterday. That was a bad day, and today has been a good day. I’ve sat here for a couple hours now, writing next to Alex sleeping, safely tucked in and sleeping, as I always imagined this parenting routine would go, just with more disposable gowns than anticipated. Tomorrow might be another bad day again. We haven’t seemed to have two good days in a row since we’ve started this. 

It’s not tomorrow yet, though. So let’s enjoy today.  It’s his two-week birthday. Happy fortnight, Fortkamp. Let’s get some beers.

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Winker

My son isn’t speaking to me. I stay up late into the night, searching for ways of how to remedy this.

***

My son is a one-pound cyclops. I haven’t seen his eye yet. His vitals are so good I don’t even want to go into detail, for fear of jinxing it. I’m on day three of my sequester, a sinus infection I think but it’s clearing up well. If the slight ache in my nostrils stops by this evening I might go in and give his new peeper a look-see. Still won’t touch him, though. Just in case.

***

Alex has a case, a big one this week. The state of Georgia passed a law last year saying that corporations could run for public office, and now AT&T/Time Warner/Comcast/Starbucks/ToyotaUSA is running for mayor of Atlanta. Alex is lead counsel for the legal team trying to prevent this from happening. I am nervous about the timing of this particular trial in conjunction with our father-son spat, or rather nervous about the spat in conjunction with the trial. I don’t want to jinx it for him. I always come to his trials, all of the open court ones anyway, and right when the bailiff says “All rise” to start, he turns to the gallery and finds me while he stands, the only time he looks at me during the entire trial, and he winks at me, and I wink back, and only then do I feel like things are going to be okay. I’m still going to this trial, even though I hate Atlanta and the idea of spending the duration of the trial within its bowels is utterly abhorrent to me, but I’m terrified he won’t turn around, he won’t wink his right eye and I won’t get to wink back, and the whole thing will be shot to hell.

***

Panera Bread just blew my mind. My sister got us a gift card to use here, and so I came here to use it. I added the card to the app on my phone but then lost track of it inside the app’s menus and settings, so I went up to the counter (there was no line! at a Panera at lunchtime!) and asked the dude how to find my gift card in the app, and not only did he have no idea, it also seemed he was completely unaccustomed to talking with customers at all. This made more sense when I saw all of the ordering machines (iPads in wood-framed mountings) scattered about the front counter area. I picked up a pager and waited a bit for it to buzz, but it never did. Instead another employee brought my order directly to me. I asked how. She said we were watching you on the screen, and she pointed behind her to where the screen must be. I said that was totally creepy but okay, I would still like my food, please. She said no, when you put your pager down on the table—she gestured to the number on the table top—we know where you’re sitting, so we can just bring it right to you.

I am living in the future.

***

Two main causes of our current rift: first, I told him I didn’t want him to climb Mt. Everest this fall. I just don’t. He’s always trying to prove himself as physically capable, stronger than he appears, and yes, he’s always been able to succeed in the past. But he’s not a large man [even in my ideated futures I cannot see him as anything but slight], and his lungs are delicate, and you have to carry a lot of heavy supplies in thin mountain atmosphere and many, many people have succumbed to these conditions and so no, I’m sorry, I don’t want you to. He said he has seen the picture of me and his mother and Grapes (what he calls his grandfather) and Aunt Ashley at the summit of Mt. Washington. I told him that was not a climb, that was a walk, and it took all of half a day, essentially, and otherwise please do not talk down to me and assume I don’t know the difference between New Hampshire and the Himalayas.

And second, I told him I would rather swallow a hammer than ever call myself a Republican.

***

I don’t eat at Panera very often. I think they’re a little overpriced, and I don’t like to get less than I pay for. But I had a gift card, so.

Similarly, when we got into the McDonald House and made a quick drug store trip for supplies, I didn’t think I really needed anything, but I stopped and lingered in the electric razor section. I usually cut my hair at home, and trim my beard too, obviously, but I failed to grab any of those supplies on the way out the door during my dash to Virginia. A combination kit with hair clippers and a smaller cordless trimmer was on sale for $25. I had already made up my mind to do the playoff beard thing while we’re here, like a hockey player, prostrating myself before the gods of good luck, but I really do look like a Wookiee’s hairball. An upkeep trim and a haircut would probably do wonders. And I’ll probably need at least one more haircut before we quit this place, and several more trims. Still, ordinarily I would never pay money for something I already own but just don’t have current access to, and the prospect is especially unattractive knowing that I’m living on other people’s money.

My wife passed by and touched my shoulder and asked what I was looking at. I told her what, and why, and she could sense my hesitation. “Just buy it,” she said. “That’s what the money’s for.”

***

Somehow it turned into a big fight, even though I already knew all of the points he made, and recognized them to be true before he even spoke them. Republican doesn’t mean what it used to mean. He said the party has returned to its roots, that’s it’s all about being fiscally responsible, about caring for the little guy and helping him stretch a dollar as far as it will go. About holding government accountable for its overspending and oversight. They don’t care about most of the old talking points anymore. They’ve evolved. They believe in manmade climate change and are proud supporters of the solar and wind industries. They support rights and freedoms of the individual as guaranteed by the constitution for all citizens. They’re pro-weed, even. They just want the taxes on your marijuana to be as low as possible, that’s all. “How can you not understand that?” he asked me. “You of all people, with your guilt complex over taking things that you haven’t earned. I watched you drive like an Earnhardt once through rush hour traffic and cut a lady off just to give her back the $20 you saw her drop at the gas station.”

I said, “Well thanks to President Ocasio-Cortez, $20 is still a lot of money. And besides, you weren’t there during the dark times. You didn’t see what happened while the grand old party was owned by the grand old billionaires, before the grand old billionaires all died grand old deaths in that horrific volcano accident in Davos. You didn’t watch helplessly while these purchased politicians dragged us into a trillion-dollar war in the wrong country after 9/11, while they bowed to the pressure of NRA lobbyists and did nothing but pay lip service as our schools and our churches were being targeted by domestic terrorists with semi-automatics. You didn’t see them sell their souls to fall in line with he-who-must-not-be-named, the king of the scapegoat and the gaslight, all for the sake of obtaining and maintaining power. The bathroom bills. The immigrant caravan. The voter fraud. The anchor babies. The wall. You weren’t there to watch them for years as they thrived on xenophobia and false patriotism and fear-mongering, as they condemned the gay community and vilified gay marriage.”

At this point, Alex’s husband Theodore, sensing the rising tension, removed his VR headset and stood up from the breakfast table as nonchalantly as possible, placed his empty cereal bowl in the sink, and left the room.

“I’m not trying to pass judgment on your decisions,” I said. “All I meant was that I personally would never be able to call myself a Republican.”

“Well I do,” said Alex, and walked after his husband. It was the last he’s spoken to me in two months.

***

Eight hours later now, and we’re back in the room at Hotel McDonald. Whatever was in that soup and salad at Panera made me feel well enough to risk entry. I got to see Alex’s eye tonight. He may not have control over its function yet, but it looks in specific directions. It seems to look at my wife, and at me. Since he’s lying supine, with his head fixed in one direction by the angle of the respiration tubes, he’s not looking left and right at us so much as up and down. Tonight I was on the up side. Every time he looked at me, his little eyebrow lifted, giving him that special expression of genuine surprise that only babies’ faces can support. This eyebrow raise is probably not surprise, but more indicative of his efforts to open his other eye. He strains and strains and it doesn’t open and then often he squeezes both his lids tightly shut with frustration, and fusses and pouts until he loses himself in the newfound dark and falls asleep. A few seconds later, it all starts over again.

***

The courtroom is abuzz. Most of the media coverage of the case Alex is presenting has been negative, as the media itself is somewhat on trial. All the cable news networks, at least, have decided Alex’s diminutive stature and fidgety hands and sharp suit make him reminiscent of a Las Vegas card shark. The legal team representing the corporation is three times as big, in number, not size, but also bigger in size, all of them tall, even the women, all of them Ivy League, seven-figure, estate-tax, tooth-whitened yacht owners. All of them stand in unison as the bailiff calls the room to attention and instructs us to rise, and my heart slows. I’m in the aisle seat, across the aisle from Alex’s table, where I always sit, next to Theodore, next to Gretchen. My palms are sweating so much I lose grip on the polished wooden knob on the bench in front of me and momentarily lose my balance, almost falling back into my seat again. I’ve been keeping an eye on Alex ever since we’ve been in here. He hasn’t looked back yet, but then again, he never does. Not until now. Right now. If he’s going to look it’s going to be now. This now, the longest now, it has to be now.

He turns his head. He sees me. His eyebrows raise, a look of genuine surprise I thought only babies could evoke. I wink my right eye. He gives me a half-wink back, seems to have something in his eye and so doesn’t close it all the way, so it’s an awkward and unplanned facial movement that says nothing, reveals nothing. But then he gives me a quick nod, wipes at his eye, and turns to watch the judge step up to the bench.

I don’t see the judge, though. I have something in my eye, too.

***

Twenty hours later: Today was a long day. A bad day. I don’t want to go into it for fear of jinxing myself further, but by the end of it Alex was at last feeling better, showing better vitals again. There is no guaranteed future yet for us, there is no luck, bad or good, there is only impartial chemistry, somewhat partial physics and entirely biased biology at play, and my doctors and nurses are my current pantheon, and I pray to them questions and they bestow upon me answers as they busy their hands at care for my son’s well-being, answers that may be truthful or may be somewhat placating but have thus far always been what I needed to hear at that moment. I do not worry for my son’s life, but I also don’t take it for granted. My charms and my jinxes, however, I’ll continue to tend to and respect, because I am not the deity here, I am not the decider, and apart from my wife’s embrace, they are all that I have to feel better.

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The Feels

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My wife woke up at 3:35 on the morning of the second day of the 23rd week of her pregnancy. There were no contractions, there was no pain. She just had to pee. She soon discovered something was amiss. We called the nurse. The nurse inspected and calmly summoned the calvary. Half an hour later, Alexander was born. My wife asleep, summoned temporarily beyond consciousness. A nurse took a few photos with my wife’s phone for us. They had me stationed in the hallway between the delivery OR and the NICU. Before they brought him through, a doctor stepped out and I jumped up from my chair where I’d been worrying my wife’s rings around my pinkie. He informed me that wife and baby had made it through surgery, that baby was eleven inches long and he weighed, let’s see—580 grams.

I said, Really.

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I am an emotional silencer. I dampen the noise of the soul.

We had to wait five hours after delivery before we were allowed to see him, because with a micropreemie like ours they don’t just have to clean them, they have to get them all set up in the rig that keeps them alive, with all the wires and sensors and stickers and gauze and lights and pillows and blindfolds and earmuffs and blood pressure cuffs and IV drips and respirators and microdiapers not large enough to fasten around the equator of an orange. The diapers are what got to me. They fetched us a pair to keep for the scrap book. Smaller than a postcard. I had to leave. His fingers are made of wax and vein and his legs are swollen up and bruised deep purple from the delivery and yet still down at the end of them are toes that look like my toes, that crinkle and move and flex like my toes, and I needed to leave the room.

I said something like I was ready to go, but Gretchen wanted to stay, so I walked out alone from the NICU bay where Alexander lives now, his second womb, but I could not remember which turns to take and I spun on my heels and spun back and back again, nearing a panic. Someone saw me and asked if I needed something and I said, Help me, please, I can’t find my way out.

Painfully metaphorical.

In the waiting room I clung onto my father-in-law and cried fiercely and then my sister-in-law and cried again. But when later on, when I took my brother-in-law to the NICU, I didn’t stop explaining things to give him the opportunity to reckon with what he was seeing. And the next day, again, I took my mom back to see him and found myself doing the same thing. Any moment that seemed to drag on too long, I filled with noise, with words, activity, I explained what I knew and what they’d done so far and who was working on him, or I spoke to Alex and told him he’s doing great and that his mother will see him again soon when she’s feeling better, or I addressed the gravity in the room directly and didn’t let others feel it for themselves.

And now, for no reason, here’s an orange in a diaper:

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Last night, my wife and I got into our first fight since the baby. It was a nonsense fight, borne of frustration and lack of sleep, and there was no time for it. I said I was sorry and she said she was sorry and we made amends quickly because we had to be awake again in an hour to pump.

I only bring it up because I am acutely aware of how lucky I am. Monday was the anniversary of my brother-in-law’s passing. One time while we were on a trip to Cleveland, aka Detroit’s only source of self-esteem, I was in Ben and Sarah’s hotel room. It was towards the end of the day, and Sarah was bustling around the room completing the tasks required of the able-bodied wife of a man with ALS. Ben was about a year into his diagnosis. He still had some range of motion in his arms and legs but couldn’t stand on his own, and he couldn’t talk so much as make throat sounds guided by his mouth shape. He had a particular noise he made when he was trying to get Sarah’s attention, and he was making it every time a commercial came on. Ben and Sarah did not listen to commercials. That was a rule. Probably more of a Ben rule, but a rule nonetheless. They turned them down when on the radio in the car, they muted or changed the channel when they came on television.

The problem was that Ben’s noise did not have an indicator of severity, meaning that “I can’t breathe” and “That Slap-chop guy is on again” were indistinguishable from one another. So every time he made the noise, Sarah immediately went into four-alarm high alert, which even for just a microsecond will run you ragged if this happens over and over and over again. Because she wasn’t paying attention to the show, she was busy setting up his travel-wedge for sleeping, or readying the handicap shower, and every approximately seven minutes she had to pause in doing these things, first to restart her heart, and second to either mute or unmute the television.

Eventually she snapped, and raised her voice, and basically told him to knock it the hell off, and what should’ve happened next was a fight. But fights require words, and Ben’s mouth could no longer make those. He sat there as if on pause, his expression doing its best to say I didn’t mean anything by it, I was only asking for a simple thing, and by the way I have a horrible disease you’ll recall so please cut me some slack. But the trouble with expressions is even if they express accurate emotion, they are not situation specific any more than Ben’s noise was. So the same expression could’ve been used for, say, being walked in on while pooping. Like hey, I know there’s a smell but I didn’t mean anything by it, it’s a perfectly simple and natural thing that everyone does, and by the way you walked in on me, let’s not forget, so whose fault really is this.

My point is they couldn’t fight. They couldn’t address the tension in the room. It just had to sit there, with everyone marinating in it, until like with a fouled-up restroom someone opened the door to let out the funk, which if memory serves was my job, little twenty-six-year-old me, hopping up off the bed and excusing myself back to my own room in the hotel to jot down the details quickly before I forgot them, because the moment felt large to me, important for me to understand.

And now I am here, big thirty-seven-year-old me, a father for almost three full days, and my wife by my side, literally, getting some much-needed sleep before I wake her up again in an hour and half for another milking, and I feel so incredibly lucky that I’m having trouble comprehending why everyone is giving us money. I’m almost offended by it. When the prospect of a fundraiser kept coming up, my attitude at first was sure, why not, I’ll take people’s money. I mean, I’ve always needed money and right now is not exactly an exception to that rule, so if people want to make themselves feel better by chipping in a few bucks for the cause, then great. Go ahead. It’s not like we won’t make good use of it. We have plenty of bills and plenty of debts. But we do have insurance, and kind, giving parents on both sides who we’ve leaned on plenty in the past. It never occurred to me that we might need more help than that.

All day I’ve watched our fundraiser creep closer and closer toward its goal, barely twenty-four hours in and we’re almost there. And like with my brother-in-law, or with my mother, I am stubbornly resisting these expressions of emotion. I want to sit down with every single person who has donated and explain to them that Alex is strong, you see? Don’t you understand? There have been only minimal complications so far. He doesn’t have any -cardias or -opathies or any other scary suffixes. He doesn’t have a hole in his heart, or hernias, he’s not deaf or blind. All the problems he has are surmountable. His bruises will heal, his tear in the skin of his back is being treated, he’s moving, he’s breathing, he’s eating, he’s peeing. I get to see him every day, any time I want. I can argue with my wife when I need to. I can argue with my wife! Can’t you understand how lucky I am?

People are still sharing their own stories with us, usually with positive outcomes but with complications in tow. Like my wife has pointed out, throughout all of this we’ve never felt alone, and I thought hearing stories like these was the most valuable part of this experience so far. But the donations keep coming, and it’s getting to the point where I have to reevaluate my initial gut reaction, and that may prove the more valuable social contribution to me in time. I haven’t cried in three days now. Alex hasn’t so much as opened his eyes yet; how can I know he’s not blind? How do I know he’s reacting to my voice? How can I be sure that a heart so small isn’t hiding a hole even smaller, or won’t develop one?

I guess what I’m saying is all of this love, from the people with experience as well as from the people without, from the 338 people who have shared our fundraiser so far (!!), from all of the astoundingly kind people who have shown their support with donations of all sizes, all of this is making me come to terms with not just the present but the many possible futures. Including the tragic. Including the hardships and difficulties of raising a child with a severe disability, which challenges I honestly welcome with open arms because it would mean that I still have a child, and anyway I have seen disability at its most severe and I all but challenge the gods to come up with one worse enough to scare me, which is pure arrogance on my part and I should not take such things so lightly. But mainly the dying, it’s the dying that could happen, still. He’s not out of the woods, yet. He’s not even out of the incubator yet. He’s not even two pounds yet and the host of things that could kill him range from the microscopic to the accidental, to sheer bad luck. Like a power failure. Do you know how many machines I am relying on right now to continue operating without a hiccup? They have to, though. They will. This story will not end like that.

I can’t imagine a future right now that doesn’t involve me holding Alex in my arms, kissing his forehead, taking him for walks on the beach strapped to my chest like Kevlar. I don’t want to focus on the tragic futures, but I shouldn’t be pretending they don’t exist, either. Too many people are sharing too much wisdom for me to ignore it. They are literally paying me to see it. This situation is serious, and it will take all of me to get through it, and even then I might not. My luck could run out. I’ve never considered myself a lucky person before. I don’t know how long this run could last. And yes, truthfully, that terrifies me.

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But, you guys...he is really strong though. He’s determined, and feisty. Tough as beef jerky, which makes sense because currently that’s what most of his skin looks like. I’ll promise to let myself cry sometimes, and let you cry, too, but you have to do me the favor of believing me on this one. Most all of you haven’t met him yet. You haven’t held his hand. I’m not trying to brag, but I have never been more impressed or more proud. Or more lucky.

A fact I will try to remember when, in five years, I am arguing with him to put his damn shoes on and get in the car already, we’re going to be late. 

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23 Weeks

There’s an art to living in a hospital and not losing your mind. This is not to say I’ve mastered it. I am doing quite well, considering the circumstances, but most of that is due to all the attention, kind words, and wished wellness we’ve been fairly clobbered by since we’ve arrived. I’m afloat on a sea of good humors and faith. I don’t know how long such things can last, but I’m not too proud to ride this wave as far as it is willing to take me.

The woman in the cafeteria tonight is not doing so well. She was having a go at anyone who would hear her. They do dinner early here, in the four o’clock hour, but I didn’t head down until around twenty after six. I knew what I was getting myself into—nothing but the staples, the picked-over salad bar, French fries, pizza, nonperishables. She did not. They were still packing up the trays of the main course for today, some kind of beef cut in a gravy sauce with mashed potatoes, so she saw what she couldn’t have, and she was fuming. I caught wind of the conversation as she was letting them know how stupid it is to stop serving dinner at six. Stupid. Doesn’t make any sense. Protestations of that nature.

After the cooks had all retreated to the safety of the back, she made her way over to the salad bar, her volume now inescapable. No vegetables! How stupid is that, no vegetables to eat anywhere, she said, at the salad bar. The romaine pan was scraped nearly bare, true, but the spinach was still ready for consumption. I mean, I understood the sentiment, to an extent. I didn’t want an all-spinach salad, either. Makes my teeth feel fuzzy, I’m not a fan. I kept wandering about the place, trying to make my own reluctant decision, somewhat regretting I’d already had the pre-portioned tin of chicken Florentine yesterday.

Eventually I decided on the buffalo wings, which were not available yesterday, and as I got to the counter I saw that the woman had made the same decision. Now it was the cashier’s turn to catch invectives. $5.99 for this? That’s insane! That’s hilarious! For six wings that have probably been sitting under a heat lamp all day? She actually laughed, a forced, derisive, and awkward ha-HA!

When at last she left, it was my turn. I smiled at the cashier politely, asked how she was doing this evening. She barely flinched. I’m living the dream, she said, in a voice almost as dry as those chicken wings. I almost snorted.

I don’t know what that woman was going through. It could have been nothing. She could’ve been here to pick up a neighbor who’d thought he was having a seizure but really his arm was just asleep, and while that dingus filled out paperwork she was about fourteen minutes late for her regular dinner time. She was dressed like she’d had to figure out how clothes work on her own, her pants riding way too high for her age with high water cuffs, her flannel shirt tucked in tightly and buttoned all the way up to the collar. Big-lensed eighties eyeglasses on a severe face, her pulled-back hair frizzed and graying. A look of someone very easy to other, to say well you just suck all the time, don’t you. I bet you make your own yogurt. Shop with expired coupons.

It’s also possible she lost her favorite uncle today, the one guy on the planet who’d seemed to get her, who’d actually and randomly also attempted to teach himself the accordion when he was he was sixteen, who also made his own yogurt, and who had been the only person in her life who knew the secret to making her smile. Who wants to pay a dollar per chicken wing on such a day? For bone-in, at that?

* * *

It’s almost the 23rd week. About forty minutes, as I write these words. Alexander is still breech, water still broken, but our team of neonatologists here is much more willing to do their thing at 23 weeks, and we’ve made it to that milestone. I’m amazed. I’m thirty-seven years old, with wealths of education in the humanities and of experience in the various service industries. I’ve lived in six states, seven if you count that summer in Michigan. I didn’t know I could be amazed anymore. I couldn’t remember what it felt like.

We don’t want to get too distracted and forget what’s really happening here, the reason for this tidal surge of blessings and love. So I don’t trust to hope, I don’t kid myself that this swelling in my chest is at all a promise of a bright, impeccable future. What I can say for certain is that we’ve made it this far. That I am lucky to be sleeping in the same underwear as last night on this foldout chair-bed, that I am profoundly lucky to have heard my child’s heartbeat four times today, that I could find among the buffalo wings a tray with five out of six drumsticks, because whatever the sustenance available it lets me be here, lying here, amazed, undone, awake, but living the dream.

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580g

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I forgot my wedding ring. I left the house quickly and yet somehow managed to do what I had sought out to do, which was pack for about three to five days, get the dogs to the kennel, feed the cats. But I forgot to grab my wedding ring off the holder by the kitchen sink, where I’d removed it because I don’t like to wear it when I work with meat. But now I’m here and it’s been about three days since I wore it last and I don’t have it on to worry it around my finger when I’m anxious. I still have my tattoo, but you can’t worry a tattoo.

My wife has been moved to the purgatory floor, where we will wait to see how things go. The room has two doors and two bathrooms because it used to be two rooms. It’s hard to tell how old this hospital is because most of it looks fairly modern, but there are little suggestions of age, of remodeling, of time.

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It is a pretty hospital, though, with a lot of considerate conveniences, and a lot of caring people in the specialization we particularly require. Our OB in Savannah was wonderful but this hospital has a whole NICU unit and multiple neonatologists (a word in desperate need of abbreviation) and Savannah does not have these things. Norfolk, Virginia, is probably a pretty place, too, especially in spring. I still hate Virginia, though. But hey. Pretty. 

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I should probably be in a worse mood then I am, but a large part of me feels lucky to be here. Three days ago I had no rational expectation of being here. I was only worried about teaching three classes that were offered to me at the last minute before the semester, which was a welcome lucky break, given that I had no other solid leads on a job for this spring while we waited on the baby to come. Gretchen was experiencing no symptoms that would’ve necessarily suggested the severity of what was happening, so all she was anticipating was getting through her training course in Virginia and basically waiting for the stupid government to pay her again. Now it feels like a bit of a lucky break that she should be here, within range of this hospital, which caters to this exact need.

It’s eleven p.m. They’re about to wake her up for another dose of medicine, intended to keep her from having any contractions. In another hour we will pass over into day five of week 22, our third full day in the hospital. The probability of a premature birth in the first 72 hours after being admitted with symptoms of preterm labor is still pretty high. I know that’s not a huge milestone, three full days, but the first night we were here, in the labor and delivery suite a floor below us, all I wanted to do was make it up here, to this floor. They talked about this floor like a dream state, a luxury resort. I honestly expected, like, turndown service and a minibar. And now we’re here, and I’m still thrilled about it. And there are two sinks and probably a better view than our first room that I’ve forgotten to look out at, but also it’s got less room and a much less modern feel than the birthing suite we were temporarily in. And it’s kind of depressing, lying here at night, thinking about how small it used to be when it was two rooms instead of one. But my wife is comfortable enough to fall asleep to Family Guy while I write in the chair next to her, and the baby’s heart rate is steady and strong, and with every passing minute he grows and develops and grows some more, which is exactly what we need him to do.

It is now past midnight. Week 22, day 5, we are here.

Stats for premature births at this stage of pregnancy suggest a vast improvement in outlook from week 22 to week 23, and even vaster from 23 to 24. Saturday would be week 23, day one, and would bring with it about a 300% increase in viability.

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On the sixth floor they have rooms for family members of admitted patients for cheap. The beds seem like hand-me-downs from remodeled patient rooms. Linens, too, slightly stained and rough, the bed sheets reminiscent of the hair on troll dolls. As though they were raised like sheep for wool, but also it’s a humane troll hair farm, so they wait for the trolls to die naturally, which is why the sheets are white. Because old trolls. Also the headboards have a particularly coffinesque feel. 

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When my wife arrived here on Monday they did an ultrasound and measured Alex’s weight. 22 week expectancy is around 450 grams, which is less than a pound, but their initial estimate of Alex’s weight was about 500, which is over a pound, and which is another critical milestone in growth, statistically speaking. Over one pound, the odds drastically increase. Later on, after I got here and the nurses that were helping us get settled into the delivery suite were going over the file, they mentioned this estimate and how it was good and then both of them saw the exact number at the same time and said oh! like in surprise but a good surprise. 580 grams! Wow! That’s really good! they said. And I swelled with hope and senseless pride that my baby can grow well. But also hope, that maybe our baby’s 22 weeks and two days might be more like other people’s babies’ 22 weeks and six days.

Today the doctor was going over the stats with Gretchen’s dad and looked up the notes and said, sooooo, weight at check-in was... 498 grams.

Wait, what?

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Not that I hadn’t felt doubt by then, of course. Not that the whole car ride up wasn’t a delirious somnambulant stupor punctuated by crying jags triggered by invented thoughts of condolences from people wanting to help out with our dogs. Not that I haven’t needed an occasional walkabout out to the car to ostensibly change hats and then found myself sitting in the driver’s seat and wailing my little caboose off. But I liked 580. It was a number to hang your hat on. 498 g is in the 47th percentile, just below average. What’s to feel pride about in just below average? What hope is to be found in a number like 47?

So yes, it has been a bit of an emotional roller coaster. And subsequent nurses have tried to figure out where the 580 might have come from, because nobody can seem to find it in the notes anywhere, and they’re assuming it was the estimate from the bedside sonogram which is a less accurate measure, typically. And yet, I’m still feeling more 580 than 498. I’m never really a glass-is-half-full type, mainly because if I’m thirsty I don’t stop to observe the glass’s contained volume relative to its capacity, I just drink the thing. But Alex doesn’t seem to be worried, himself. They say his lungs will have trouble developing at the same pace without the amniotic fluid around, but he’s still moving about, flexing his muscles, which to me indicates his lungs are also practicing providing those muscles with oxygen. We have a lot of support. A ton of support. People are reaching out from places I’d forgotten I’d ever been, and beyond. Even if we were in poor spirits, I don’t think we could be there for long with all of the love being sent in our direction. So thank you, all of you. Every last bit of it is appreciated.

We are still on the edge, but it feels like we have a good grip.

There are two sets of elevators about thirty yards apart in this wing of the hospital. One is for staff, the other for visitors. On the floor where I have a sleeping room, this motivational sign was put up between the two sets of elevators:

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Which is hilarious but also, as intended, motivational. The difference between doctors and visitors is of course more than attitude, but I’m in the 580 club. Both of us are. All three of us. And we are overwhelmed by all of your support.

Thank you, all.

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Eggnog and Irony

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Merry Christmas, friends! Especially Coast Guard friends. This cannot be an easy year’s end for you, I know. The government has shut down, and while the other branches of the military are funded, the Coast Guard is overseen by the Department of Homeland Security, which is not. This means that the Coast Guard is not getting paid. They cannot stop working, however, because we literally need them to be on patrol and available all of the time. But we as a nation have decided not to pay them over the holidays, and indefinitely onward, until the federal government opens back up.

Instead, we are mired in a pissing contest over the construction of a wall, or wallish fence, along our southern land border with Mexico. Some people greatly care about this issue. Our current president greatly cares about this issue, enough to pull the trigger on this shutdown that is taking away the hard-earned pay from 38,000 active duty Coast Guardians (not to mention the nearly 20,000 agents of the US Border Patrol, 34,000 Customs agents, and 53,000 workers of the TSA). As of this writing, approximately 240,000 other likeminded activists (or Russians, who knows) care enough about this issue to donate their own money to a GoFundMe campaign that aims to raise a billion dollars to pay the government’s tab in constructing the wall-fence (which, under current law, is not actually allowed — you can’t buy government action like that), a fundraiser that has to date raised over 14 million dollars.

Also also, low-end estimates for a complete, border-spanning wall* (*fence) range from $25 billion (John Oliver) to $12 billion (Mitch McConnell) to $21.6 billion (Homeland Security) to $4 billion (Trump) to $6-$7 billion (Trump later) to $10 billion (Trump again) to $70 billion (Democrats) to $25 billion (latest FoxNews estimate) to $15 billion (most recent Trump estimate) to $5 billion (how much Trump is currently asking for to build a $15 billion wall, but congress will not grant him, thus, the shutdown). So even if the fundraiser meets its goal, the only good it could do would be to pay each of the 170,000 successful illegal immigrants per year $5882 apiece to go back where they came from. Which would probably be more effective.

Full disclosure, in shutdowns past, backpay for work has typically been granted. I just thought it was worth pointing out that all of this political grandstanding and finger-pointing is in favor of an inanimate, one-dimensional protection of 1150 miles of US border. Meanwhile, Florida alone has 1350 miles of coastline, which is not to mention the approximately 10,000 other miles of ocean coastline that provide access to these United States, also not counting the 4530 miles of US coastline in the Great Lakes which must be guarded from invasion by those sneaky Canadians, but all of which falls under the protection of 38,000 active duty Guardians and 8000 reservists, to whom we are currently sending the message, loudly and clearly, that we appreciate your service and all, but if instead of all that intense training and risking your lives and whatnot, maybe could you all stand in a line and hold hands and be made of chainlink and cement? That would be great, thanks.

Happy holidays, ya filthy animals.

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Frightened Rabbit

Little boy, come to me quickly. This has been an interminable wait. My arms ache to hold you. You fade in and out of reality to me. In some moments you have a face, a personality, a name. In others I am cold and alone and my embrace finds nothing but blankets and repetition.  

I imagine you Scottish and moody, clinging to that which makes you feel, running at breakneck speed down hills into lush fields after grasshoppers, laughing, the next moment your faced gnarled up and glowering at the turn of a shadow. I want to breathe life into your bones, and look into your eyes, and press you forehead to forehead, come to me now. 

Someone’s going to break your heart one day. 

My favorite thing is to not exist. I want to tell you how. If you can pick up a guitar. If you can learn how to type, or paint. If you can sing and become nothing but a voice. If you can climb a tree and become the wind. Put on your favorite shades and sit on a bench in a theme park and watch families traipse past in the middle of their own troubles, their tiny bubbles of dropped water bottles and hunger and tickets and trinkets and sweat and blisters and gluttony and giggles and farce, and you are there with them, next to them, a part of them, until they are out of earshot and eyeshot and persist only in your mind. 

I would that you take the best of me. I am impressive, on my best days. A wallflower at my worst, and that’s not all that bad a thing. 

Your mother has you now, tucked safely inside. Tomorrow you will ride a boat maybe and not even know it. She will smell the ocean and you will smell the fluid imbued with the scent of the ocean and her breakfast and your own offal and the combination will formulate a certain chemistry in your brain that you’ll never be rid of. I would apologize for it but when you’re my age you wouldn’t change a milliliter of it. So you’re welcome, I suppose.  

Can I tell you about boats. About water displacement and Archimedes and the buoyancy of fat. I want to tell you easy to digest falsities about how most of your body heat dissipates from your head, only to tell you later in life this was just a scam to get you to wear a toboggan. I want to raise you far away from nowhere, which itself is far away from anyplace else, a woods, a mountain, a wooded moutain where you will be alone with me and your mother and our dogs and the broken sky and the shakey pines and the mountain lions and rabid curious raccoons and you will be safe, invisible in the void. I can’t protect you forever, but I will try my best. 

Let’s go to Alaska. Let’s go to Siberia where we don’t speak the language and we can learn to live together, after all I don’t really know a thing, I am just an uncut wound yet to bleed. I will bundle you in swaddles and swaddle you in bundles and we’ll slay an elk and disembowel it so I can tuck you inside to last the night. Yes that’s right I would kill for you, I would make shelter from the most innocent of things just to shield you from undue sun. I will carry you until my arms fall off. 

I hope you feel safe in sleep. I want to grant you an affection for the subconscious existence as early as possible. I don’t know if it’s possible to nurture a true waking passion until your nightself has access to God. I will give it to you. I will make you know you’re protected, that in dreams you are free to explore, that nothing can hurt you, that in dreams you aren’t even you, but a ghostly voyeur, unbound, encouraged, armored, brave, insightful, kind, capable, and most of all a font of resilient passion, unencumbered by pain, by fate, by loss, by love, by the most common or rare of human faults.  I want you to know in dreams that the guidance of your heart cannot lead you astray, that should you be tugged chestward into volcanoes or hurricanes that at least with your eyes closed you will always be reborn, so that when you follow these same paths in waking life and the future seems uncertain and you are at your lowest you might remember the lessons of your inner sanctum, and follow them, to death or to life beyond.

I want to have a pizza with you. Because pizza might be the greatest thing there is. 

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Hypocrypha

Uggghh. The words are not coming fast enough. I need to write on something else for a minute, because this section of the novel is frustrating me. 

I’ve had this article saved in my reading list for months now as possible blog fodder, an article about Stephen Miller, the fucking nightmare child born of hatred and male pattern baldness who is one of Trump’s top advisors. His uncle wrote this article for Politico that outlines their collective family history as migrant Jews from what is now Belarus who ultimately avoided the Holocaust—only seven people from their village survived it.

I’m not sure why I saved this article, why I wanted to write about it. It seems almost irrelevant to me today. Trump himself is famously of immigrant ancestry. His wife’s family used the same chain migration process he demonizes to become American citizens. Hypocrisy is literally of no concern to this administration. In fact, it’s practically encouraged. Like a street gang who wants you to kick a guy’s ass before you can join, to be a true Trump acolyte you have to prove your mettle by demonstrating your commitment to bias. This is not a secret. This administration does not care about fairness or justice, and they are none too concerned with appearing to care, either.

I’ve all but given up on changing anyone’s mind. It seems we’re beyond appearances. We are not concerned with integrity. Integrity does not win games, or elections. People support this president, not despite his overt, amoral rapacity, but because of it. Gluttony is sexy. Charity is for pussies. Empathy is for fairy tales and fables, Aesop and Grimm. This is the real world, and the real world is ending, so it’s grab what you can and fuck the rest.

Maybe I was interested in this because it’s another example of how liberals are missing the point. There is no conservative out there who would read such an article and have their eyes opened, like oh my gawd! Really? Stephen Miller wouldn’t exist if his own policies had been implemented back in 1907? Well I certainly can’t support him now! No. They do not care about Stephen Miller or his policies, because his policies do not affect them in any immediate or tangible way.  In fact, I would wager most conservatives do not know who Stephen Miller is. The required emotional leap between my own suffering and the suffering of others does not exist. And I don’t think that’s a conservative problem, I think it’s a human problem, or at the very least an American problem, a modern, smartphone, NFL, American problem. 

There was also a recent article published in the (apparently) liberal Washington Post (owned by the richest man in the world) by a group of Yale researchers who said they converted conservatives to liberals by making them feel less afraid before asking them politically charged questions. Which, congratulations. You could’ve set up the study in the opposite fashion, changing liberals to conservatives by reminding them how many people die from the common influenza virus every year before questioning them about the immigrant caravan. It’s not a question of whether or not fear dictates how willing people are to share their good fortune with others. That question was adequately answered by John Locke and Thomas Hobbes hundreds of years ago. The real question is how afraid people want to be. 

Well that doesn’t make a lick of sense, you might say. Who chooses to be afraid? Again, not the right question. We’re choosing not to achowledge our fears, our stresses, our difficulties. If we don’t admit them, we can’t address them. And once again, this is not just conservatives, this is an American thing. Another recent article in the (apparently) liberal New York Times claims loneliness is the root cause for people clinging to extreme political ideologies in this country. Because we’re a transitive country now, we don’t have a home base anymore, a sense of community based on location, so we join virtual communities, we represent ourselves with avatars which can hide all the uncomfortable things about ourselves that we don’t like to share, including our anxieties and fears. So we don’t share them. And they don’t get dealt with, never aired and never exterminated, and so like any common pest, they multiply in the dark.

I’m not trying to say the only way to return to sanity is to go back in time to a place where we talk to our neighbors again, or live in the same towns our entire lives.  I’m saying we need to find the bravery to talk about the things that scare us, even if we don’t have to, to choose bravery, to name our demons and accept the embarrassment that might come with it but in the process allow people with more experience to inform us, so we don’t have to be so afraid.

Hobbes. That might be a good name for a boy. Middle name, anyway. We’re having a boy, did I mention? It’s a boy. There’s a lil pecker in my wife’s belly. And some balls. Boys are gross.

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