Telling time

You can tell time with hospital monitors. Sudden beeps, chirping machines, and intermittent cries mark milestones, victories, achievements, and setbacks alike. Nurses come and go with the changing of the guard and every so often doctors appear to mark the noon and midnight of hospital life, rounds. Parents greet the day like so many commoners swept away in tidal events beyond their control, pulling with or pushing against, the rushing daily currents.

So much is beyond your control as a common cardiac parent. Every day is toil; exhausting, unyielding trudging toward whatever end. Aurelia is a warrior amid this struggle and her care team the aristocracy, grand and minor nobles alike, but we parents are commoners. We search for whatever ways we can to better our lot and the lot of our daughter in a world largely beyond our control. Maybe it's through an observation we share with the care team, or some piece of knowledge gleaned from experience as her day to day caretakers, or even questions we ask to keep ourselves and everyone else on their toes.

We scramble around like this out of love, of course, but also to fight off fear and its potential powerlessness. This is a good and worthy struggle, but it can make you so tired. Everything slips behind an omnipresent haze, clouding conversations, thoughts, even feelings. Some days little can clear away that haze except for the passing of time, one nurse, doctor, beep, or cry, at a time.

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Today Aurelia made some progress, baby steps size, but progress nonetheless. Her labs came back mostly clean, so she's off contact separation and whatever she does have brewing in her lungs is so not concerning that folks are going to let her fight it off on her own. Her fever is not sticking - if it shoes up, it goes away again with some tylenol (and even that is not always needed) - and she continues to tolerate her jaw movements reasonably well.

The tough part about that is avoiding any jiggling or jostling of the screws while attaching the screw driver. Her jaw is still mighty sore, so attaching that to her can be the hardest part of the job. We are slowly weening her off the respiratory machine and we hope to extubate her sometime tomorrow. I'm very excited about that as Aurelia will no longer need to be restrained. Watching her flail about because her arms are tied down to the crib is heartbreaking. Still, she is so brave, and so strong, and so determined. When she's awake now it isn't to have those silent screams every time, it's to make eye contact and to furrow her brow and to blink, as if to express her will and effort to overcome this struggle. Or, more likely, she's trying to fart. She's been really gassy lately.

Speaking of which, she's only had two bowel movements in over a week. We're not worried, but man, you ever seen a 17 lb. baby unleash a breast milk diaper? I swear to you that my time in Purgatory is greatly reduced because of what we've seen, smelled, and cleaned. To that end, in an effort to be sure all of Aurelia's insides are working right we did a hypoglycemia test today, hoping to see if her retching at the end of meals is related to a drop in blood sugar. We'll keep you posted. We'll also be doing a hearing test to dot some 'i's" and cross some "t's" with our doctor. I'm inserting a picture below of her jaw apparatus, via x-ray, so you can get a clear understanding of how this all works.

Here you can see a number of things on, around, and in Aurelia. From the bottom up: You can see the wires wrapped around her sternum from her previous open heart. Just above that you will see some of the sensor wires on the outside of her skin, wrapping around her torso. Above that are two separate marks on the x-ray; to the right is the band around her pulmonary artery, restricting the blood flow to her heart. On the left, moving up her throat from that location, is the breathing tube intubated through her mouth. That brings me to her jaw. You can clearly see the mandible device attached to her jaw in two places on each side. Between those two anchor points is the incision that splits her lower jaw. As you follow the metal bracings up behind her ears, you see the two screws that emerge from her skin. As we turn those with a special screw driver, the jaw splits along the seam between the anchors, moving the lower portion further forward and bringing the tongue along with it at the same time. This will help her breathe by enlarging her airway.

And she looks like a bad-ass combination of Skeletor, Megatron, and the Terminator. My daughter is a ass kicking cybernetically enhanced warrior. Bring it on, open heart surgery! I HAVE STEEL JAWS!

Split Life

Noises echo more at night when you are alone in a house. The first few times you call out to pets or talk on the phone it surprises you, but you get over it quickly. The tricky thing about those amplified echoes is how they insidiously sneak up on you and strike at particularly fragile moments.

Waking up at 2:00 a.m. alone to go the bathroom is one of those times. You open your eyes discovering that even the cats have abandoned your bedside as you fumble for the covers in the gloom. Stumbling into the bathroom isn't all that bad and neither is relieving yourself, but when you flush the toilet, that's when the echo slaps you awake by boxing you right about the ears. Instantly you remember how alone you are and you're painfully aware that what was home is just now house.

Your mind stirs all of that around for a few minutes and inevitably faces of your wife and kids float through your mind and each image makes you feel more alone in the black. Darkness expands in those moments. My bedroom becomes an abyss and I'm floating in limbo with a hope that sleep will come again quickly. Sometimes the minutes drag out interminably and sometimes a glance at the clock shows that hours have passed in overbearing silence.

Strangely that same limbo is in Madison's eyes. When I prepare to leave the Ronald McDonald House after a visit I can't help but look at her. I love her honestly and openly and fervently and she moves through life with easy smiles and infectious laughs. Children and adults move toward her inexorably, pulled by the gravity her joy radiates. You should see her walk through the common areas of the house - it's like watching planets spin around the sun. People, strangers even, call out her name in hellos and grins and she moves with real purpose in everything she does.

She had me in orbit from the moment I saw her, of course, but on those days when I am preparing to leave her and Aurelia and Jillian behind I feel so torn. I feel ripped and and shredded inside because leaving her there is unnatural. I look at her marvelous hazel eyes and feel the full force of her love and adoration. I'm forever bound to her as she moves through life, but it's as if some dark matter yanks me from her. When I'm looking at her in those moments I can almost feel the tug at the back of my neck and it's unyielding.

The moment I say goodbye and turn to go, even if my family is still in sight, I can feel that endless black everywhere. I can look at them and smile, or wave and cry, or tell myself that it's only for a few more days until I see them again, but I'm over the event horizon by that point and I can't even hear what I'm trying to say. The safe passage I took around my daughter and family vanished and I'm drifting through endless space.

It's like time slows to a near crawl in that black hole where I'm away from them. I can't stand to be anywhere but there. I'm motionless like a clock that's lost it's tick and as useless as one without its tock. I get home and unloading the car is a daunting task, let alone cleaning up after the cats or doing laundry or putting things away. I'm paralyzed by being 'home' and I refuse to think or do. I protect myself from limbo by doing nothing because doing anything means noticing how empty it is in Gettysburg for me. Instead I'll read, or turn on HBO to lose myself in re-runs of Boardwalk Empire or InTreatment (I think I'll need more of that myself once this is all over!), or I'll play on the computer or PlayStation or XBox.

Even in the morning I wake up as late as I can so I reduce time in the house to its absolute minimum. Driving to school is easy because I can lose myself in the trip and work itself is nothing compared to being away from my family. Being there is surreal because I have an ethical obligation to do best by my kids and an overwhelming ethical need to be with my family. I teach with enthusiasm still and am prepared enough to get through most of the day without letting on my frustration and exhaustion, but my heart and mind is always somewhere else. I'm listening for my phone, thinking about Aurelia, fighting off fears about going home alone, worrying about how all this is hurting Madison and Jillian, and all my students see is a smile and laugh and an activity on the moral imperitive of a Senator to submit to the will of the constituent. God how sanitized I make this seem during each day.

Every now and then I slip and fall into limbo at work. It usually happens in the hallway or faculty room or on the stairwell. In the relentless pull of being torn away from my familiy everything about me sags. My eyes deaden and my cheeks slacken down over my jaw. My shoulders droop and I lean forward over my feet and the bags under my eyes take on weight. I hate being seen like this, stuck in two places at once and unable to be free. It's not right or natural, or at least that's how it feels. I *need* to be there. I *need* to be with Jillian. I *need* to be with Aurelia. I * need* to be with Madison. I *need* to work because 62 days of Jillian being away and us being on one income means you lose all your savings. I *need* to be here to teach as much as I can because I am a professional that knows his work matters to the lives of kids (not just their minds). I *need* to be happy and smiling for my own sanity sometimes and to fake myself out over this misery and split. I *need* so many things and being this split is not one of them.

I know time passes. I know I'll be back with them in Philly soon. I know that when I'm there I'll be swallowed up in euphoria. I know that when I'm here I do good work and make a difference for kids. I know that foundations and family and friends will come through when needed and that finances will take care of themselves. I know that even the house needs its attention and affection and it's not a bad place to be. I know that so many more are thankful for so much less than me right now, but when I'm split it feels so hard to do anything right.

Sometimes you feel like you let your colleagues down, because they are lifting your dead weight. Sometimes you feel like you're letting your family down because they are struggling along without you. Sometimes you feel like you're letting yourself down when you lack the will to change or act, but all of this is sometimes. That's the thing about this stupid split life - this is all sometimes and never all the time. It can be maddening because you are never one thing. You're only some thing for some of the time and you're still some other thing for some other or that same time, but never all the things you need to be.

I know this whole part of the marathon is coming to a close soon (I hope) but I hate this split life. I can't wait for my selfishness to be fulfilled so that my family is all together and we're figuring out our new life from one place all the time. I know it'll come in time, but for f*ck's sake, now is time enough!

A Half-Life

There is a strange sort of half life in the hospital. You can see it in the eyes of parents and more so in the eyes of older patients. It's hard to describe. I suppose it looks like exhaustion to most people, but there is something more insidious about how the hospital treats you.

There is a constant desperation underneath the dead eyes and sallow cheeks. With our tousled hair we aren't zombies, but we are definitely living in two worlds. We are filled with hope, it's true, but we also dread the next crisis, beeping monitor, or upset cry. Even sadder to us as time passes is our desensitization to the monitors and beeps and warnings going off around us during the day. This only happens at your most tired and vulnerable moments when you really can't think about much of anything other than the six inches in front of your face.

Usually during this time someone will come to your room and rouse you from this hospital induced stupor and tell you about the result of some test or some other test to come or some medication adjustment or the current status of the doctors on rounds. Very rarely your child will deliver good news herself, through a smile or a happy chortle, or even a boisterous bowel movement (again with the poop!). Rebounding from these truly transcendental, but empty, moments is odd. You see parents and patients alike look around with dreamy expressions, and some reach for a cold hospital drink from one of those universally bland and unappealing opaque ribbed plastic cups with an aluminum foil 'cap.'

Some say a word or two to their partner, others take a step or two from their room or pod, and many turn to their nurse for comfort and support in the form of good news or a silent smile. You recognize all these emotions and feelings in the faces around you and you almost push yourself to ignore them rather than pity them, because if you let pity exert itself for them then you begin to let it feed on your sadness as well.

Sadness here isn't really about tears, so pity doesn't usually take the form of someone hugging you or holding you tight (though that is often what we really need) when they visit the NICU, or CICU, or CCU.  Instead people see these babies wired to machines and struggling to breathe or they watch us practice putting tubes down the noses of our babies and they say vague self-insulating platitudes like, 'It will be OK' or 'Don't worry, she's in good hands.'

You register these things in the back of your mind and you smile at the appropriate times and nod at the niceties but you really just feel the strange hospital sadness all the more. Your mind whispers things like, 'She is NOT ok' and 'I KNOW she is in good hands, but what the hell does that have to do with anything?!?' and you dismiss these thoughts quickly because you know that reality is not what most visitors want to see or talk about.

And that's ok, because pity here in these wards is about the depression we feel as parents of a CICU or NICU baby; our days drag out in marathons of emotional and spiritual endurance and we silently pity each other and you almost feel yourself giving whatever will you have left out over to the parents and people around you. Pity here is hoping for others, that if you can will them well, or watch them survive then you know you can survive your own sadness and your own race against whatever is hurting your loved one.

In some ways the pity we feel for ourselves and each other leads to hope that together everyone makes it through. As families pack up and leave the hospital or the Ronald McDonald House you know that some made it and they are leaving with their child and new time together as a family. You know too that some have left their children behind, or that they will meet them again in their hometown or home state for one final goodbye, but you can see them walk out with their heads high and their arms around one another knowing that they gave all they could and used all the willpower we and others gave them, and that in this case their best was simply not enough. And as horrifying a fact that is, it is still enough for families to make it together.

All of that said the life we lead here isn't natural. I don't know what to make of how I spend my time here at CHOP. I'm not a teacher here and I could give a dog's fart about anything outside these walls, but I have to still make sub plans and come up with lessons that I don't teach and don't assess and really don't even think about until 2:35 each day when I wonder how many, if any, students misbehaved.

I have two daughters here, one I see only part of the time and the other exists in a strange world of tubes and wires and pumps and blenders that is undoubtedly foreign to me. Both of my girls are in some ways removed from me as a father. It's hard and a struggle to find a pattern here as a dad, for either girl, and just when I feel like I'm hitting a stride and improving everyone's quality of life I leave and let all that progress slip into the filtered air ducts of CHOP and the CCU.

Or at least, that's what it feels like when the hospital half-life has you in its grips. During moments when you look into your newborn's eyes, or splash in the water with your 19 month old at the Please Touch museum, you know that you always make a difference and that love lingers longer than the pain of separation.

See that's the thing about hospital half-life. And maybe it's what makes it so punishing on everyone here - you don't control your future or the future of your loved ones as much as you can on the outside. Your life goes and stops on the words and machines of other people. It's almost like the tortured half-life you see in people who live in airports, shuffling from city to city, dependent on professionals who move people through the air safely and (hopefully) quickly.

Folks here yearn for an end to living on someone else's schedule and by someone else's words and medications and tests. We trudge through all of this day in and day out to get back home to our friends and loved ones so that we can hold hands outside the hospital and hug each other knowing that what we've made is a family stronger for the struggle and one that still believes in hope and miracles and the power of real human love. It's not a bad thing, this hospital half-life, it's just a quasi state of existence that's hard to understand unless you've lived it yourself. And I think that's a good thing.

A quick update from crib-side

It has been a difficult few days for me as I adjust to all the changes that have unfolded at what feels like lightning pace. There are many updates to share and thoughts and feelings to get out on 'paper' but typing them on a smartphone isnt the best way to compose a post. I'll try and get something more substantial up later today, but I wanted any followers to know that Aurelia is a champ and doing just fine. More rto come soon!

A daily update and life from afar

I don't know that I have the words to write about what it means to me to be here teaching again and not at my family's side, but I can share a bit of how Aurelia is doing and some impressions I've had during this first day away.

Aurelia has had some changes to her fluid intake and her electrolyte levels as they work to keep her hydrated during this time on her diuretic. She's also off the bili lights and she did have a nice time today with her mother, being held for a good fifteen minutes!

The amount of fluid being pumped from her lungs continues to decrease each day and the general surgery people were pleased with what they saw this morning during their consult. She's still on pace for heart surgery on Monday and they will do a echo sometime on Thursday or Friday to determine the procedure for her heart surgery.

Rounds this morning went well and the doctor's scheduled her for no new tests. She's off her breathing tube and while her breathing remains labored they are no longer issuing daily x-rays for her chest until there is some sign of a drop in her oxygen levels.

The urology and kidney doctors are pleased with where she is with her kidney and how she is avoiding infection, and the ophthalmologists have said that her eyes appear to be fully normal. We'll have to wait a full two months or so for the genetic screening to be completed, so until then we won't know what's possibly behind all these many troubles.

Other than that, she is looking good. Dr. Naim and Dr. Ince are just awesome and I love all the nurses that Aurelia has had during her stay. They are amazing, and having one nurse per baby is such a godsend. We can call in directly at any time and get updated (which I am thrilled about) and everyone there has been very supportive, including our social worker, Caroline, and the folks working with the COPE program (the parents study that we're a part of).

As for what it feels like to be back at school? Well, I don't rightly know to be honest. Part of me is depressed (and that good sinking heart sad depressed, too), part of me is forlorn, another part angry - at myself and the situation, and parts of me welcome the diversion that is teaching.

When I'm actively teaching I can consciously escape from all these feelings, but when I let the students do any independent practice my mind automatically switches off and those emotions come flooding back. I'm not sure how to describe it yet, but I'm working on the words. It feels a bit like a part of you is alive, but listless, almost comatose. It's not dead or empty, but it is sullen. I don't want to call it a nagging feeling, and it goes beyond persistence, but it feels almost like a hole inside that has been filled with some sort of viscous sludge that has hardened into a pit of loathsome despair.

As I find words for it I will post them, but this is a new emotion to me, different than depression or its cousins, so I want to try and wrap my mind around exactly how it is impacting my behavior.

And other good news, before I close. Jillian's mother broke down and took her to the hospital today. A major victory! Also, we were just relocated to the Ronald McDonald House five or so blocks from the hospital. This is a major victory as well!

A Difficult Night

This is a difficult night for no other reason than my daughter is sleeping alone in a hospital with no family nearby. My wife is exhausted, pumping every three hours, forced to worry about transportation in the city when I go back to work because her mother won't drive in the city, and heart torn because with her release from the SDU (Special Delivery Unit) today she no longer is near Aurelia.

Add to that the guilt of trying to balance time we spend with Madison and the needs we have to sleep and be together as a couple by ourselves and there is no way that we escape all this emotionally unscathed. I've felt such a range of emotions tonight; anger, fear, worry, sadness, happiness, exasperation, joy, happy have all shown in my face, but I think I'm tortured most by how much the decisions of those around us dictate the care of our baby.

We will do all we can to be a part of the health care team for Aurelia and to make sure she knows us as her mom and dad, but even then we operate within the confines that the doctors and others around us allow. There is a mighty frustration in that limitation and I chafe under its restriction.