Our Unexpected Introduction to Infant Cardiology

phototherapy

We were now totally unexpectedly sitting at another admission desk while we were being checked into another hospital – this time Rush, on Chicago’s near west side, much closer to our house.  There was a big, open atrium, leather chairs, granite countertops all around.  We were shown into a room in the Children’s Hospital section of the complex.  Earlier in my life I had thought how sad “Children’s Hospitals” must be, and wished that I’d never be in one.  I associated them with children receiving chemo, or dying of untreatable disease.  And here we were, our child 3 days old, walking through the doors.

Bilirubin phototherapy is a thoroughly routine treatment.  In fact, in the long panoply of hospital experiences we had over these few days, this may be the only positive treatment that definitely did something.  Almost all the rest was monitoring, testing, diagnosis – but here was bona fide treatment, what we’re supposedly paying all this money for.

Sam began the phototherapy around 4pm.  They gave him a mask that looked a bit like opaque swim goggles, so that his eyes wouldn’t be hurt by the lights.  He lied on the bed and we had to wedge him in with rolled up blankets so he didn’t squirm his way away.  The light itself was a neon-ish purple, with the faint effect of infrared.  We had to remove him from the light every two hours or so that he could eat, either from Brooke’s breast or from a bottle of extracted milk.

After he had been under there for some time, the attending physician and his student assistant came around (Rush is a teaching hospital).  The doctor did a routine checkup, and while he was using the stethoscope to listen to Sam’s heartbeat, he raised an eyebrow, and whispered something to his student.  Something like “what do you notice?”

A few seconds later, he turned to us: “Has anyone told you yet that he has a heart murmur?”

(us, shuddering inside after all we had been through but trying to seem like concerned but relaxed parents) “no.”

“Well, I’m going to order an echocardiogram, and have our pediatric cardiologist follow up.  We hate to miss anything and would just like to be thorough.  Many heart murmurs are very ordinary and it’s most likely nothing that will affect his health.”

We finished up our conversation with niceties I don’t remember.  My head was spinning.  I was completely overwhelmed.  After he walked out, Brooke sat down on the sofa – perhaps to feed Sam, and I walked over to the window.

I leaned against the window-sill and looked out from the 5th floor window.  It faced north, opening up to a view of the Eisenhower and the Blue Line El, then beyond that the vague skyline of Wicker Park and Ukrainian Village.  Off to the right you could see some of downtown.

This is the sort of view I ordinarily take great solace in.  On this occasion, I leaned by forearms on center of the window frame, shrugged my shoulders and began involuntarily weeping.  I thought of a dog we had when I was 10.  Her name was Scruffy, and she was a beagle.  She came home to great fanfare, and that night, my dad went into the backyard (now our “new house” at 1334 Elmwood) and threw a stick with her.  He turned on the backyard light and did it again and again.  I sat in the family room and watched out the window.  My dad never did things like that.  He usually just sat in a chair with his books and his music and his television and his crossword puzzles, vaguely pretending his way through a conversation with me.  But here he was, on this night, playing go-fetch with our new dog.

Three days later, Scruffy had to go to the vet.  A day after that she had to be put down.  She had some sort of bacterial infection that was incurable in dogs that young – and as I remember it, it fatally compromised her heart functioning.  My parents say it was the kennel’s fault, they got their money back, and a few weeks later we got two other beagles that stayed for 11 or 12 years – Buster and Barney.

But looking out that window I thought about Scruffy.  I kept racing my mind in circles, and rational thought upon rational thought to the contrary, I could not fight off this sinking feeling that this would be the story of our Sam.  We’d think about how cute he had been, what a wonderful baby he had seemed, and then, just a few days later, after an apneic event, high bilirubin levels, and now his heart not working – just a few days later, he died.  And that was all we’d be left with.  Again I thought “dayenu.” It would have been enough.

I thought also about Mikey Stone, the son of the pastor at the  church where we went while my dad worked an internship there, the reason why we moved to Wilmette when I was 4.  He had had many heart surgeries, and my mother had told me that they expected that he would probably live until he was 20 or 25 (he was then just a year or two older than I was).  I thought that I didn’t know what happened to him.  I remembered though this sense that surrounded him, that he was broken, that somehow everyone knew that about him.  I was afraid to talk with him, afraid to touch him and accidentally hurt him.  I was afraid he’d have some sort of attack right there in church or in the hall beneath the church during the coffee hour.  And I thought, even if our Sam does make it, that’s how people would see him.

I cried hoping Brooke would notice me.  She did.  A few secondslater she was at the window with me, hugging me and I was trying to tell her about Scruffy and Mikey Stone but I was too sad to speak about it fully.

In retrospect this may sound like an extreme set of reactions I was having, but you have to measure the cumulative effect of all of this bad news.  Think of a bad day you’ve had – perhaps a medium-level thing is wrong, like you couldn’t sleep the night before, or you’ve got a bit of a stomach thing that you can’t shake.  You’re at work anyway, and otherwise little things become big, just by attraction, by accumulation.  Every new minor bad news becomes a source of more and more anxiety.

This is how I felt.  First, the labor had been induced by Pitocin, next, Sam had stopped breathing an hour after he was born, next he had struggled with breastfeeding and milk supply, next he had high bilirubin levels, and next, we found out he had a heart murmur.  Each successive bit of news built upon the others, until finally, I had reached the point where I had given up hope of his even surviving, much less leading a normal life.  In the Exodus story, the refrains of the Dayenu song chiasmatically echo the 10 plagues upon Egypt.  I felt like we were marching through those plagues – and the last – death of the first born – loomed large (in my mind anyway) as a very real possibility.

A few hours later, we met with the pediatric cardiologist.  Those words – “pediatric cardiologist” – are in and of themselves terrible.  You just don’t want to be dealing with your newborn and a heart problem.

This doctor seemed to know that at a very deep level.  I really appreciate the approach he took.  He sat down, and before he said anything, he took out a piece of paper and pencil.  He began drawing a heart, with its chambers, valves, and walls,  He was a good sketch artist, and went back over several lines efficiently yet deliberately.  I realized right then that this was an essential part of his job, drawing this picture.  And taking time to draw it.  Giving the parents a chance to settle into the fact that they were now speaking with someone they never wanted to be speaking with.

When he began to speak, he spoke in the most mild manner possible.  You could hear him, but only just.  Very calming, he explained to us how the heart worked.  I remembered this from biology class.  He explained to us that this was a fairly common condition, a Ventricular Septal Defect.  I already knew what this was, because over the previous two hours, I had already read everything I could find about heart murmurs and congenital heart defects, pouring over document after document on my phone.  I had been hoping it would be a “benign heart murmur,” that is, one without any particular cause.  It turned out I was wrong – a VSD was a real “congenital heart defect,” but, he explained, this was something that usually went away on its own, and would just have to be monitored every few months, checked up upon, but most likely never operated upon.

He smiled and answered all of our questions, many of which came from me, having just become some sort of amateur heart expert.  I asked him about pulmonary pressure, growth, oxygenation levels, breathing.  I wanted to show him that I knew the score, that I was someone he could speak frankly with.  When he left I felt relieved.  Not exactly trusting that everything would be all right, but certainly relieved of the immediate crisis.

That night at Rush was tough on us.  We watched an episode of Parenthood, a show that had taken on added significance now that we were actually parents, but one we had enjoyed for several years before this night.  We watched it on an iPad though, and while wedged onto a couch that allegedly was also a bed.  One of us could have gone home but that was never going to happen.  Sam slept in crib with the lights on it, and Brooke fed him all through the night.  There was a private shower in a room down the hall.  It reminded me a bit of staying in hostels while backpacking through Europe.  It had that same quasi-privacy and the accompanying quasi-mildewy smell.

Sometime that night my father stopped by to bring me home and grab some things from our apartment.  When I got home I discovered something one of Brooke’s relatives had sent us: Sam’s first piece of mail!  While in the car I tried to tell my dad about the heart issue.  I hadn’t brought it up with my parents, instead texting my sister and letting her tell them.  I just wanted to pretend it wasn’t true perhaps.

IMG_0503

 

The next morning brought us to Easter Sunday.  Easter is the Christian holiday that has always felt the most distant and metaphysically problematic for me.  I just never got it.  I wouldn’t say I get it now, but – our very dear friend Ian, the same very dear friend who let us use his church’s space for the baby shower, came to the hospital to lead us in Easter worship.  He brought along an antique set of miniature worship implements.  He had worked for several years as a Chaplain, and so he had plenty of experience working with people in much more dire circumstances.

He brought along his church’s bulletin from that morning, and led us through worship.  We skipped some of the music, but we moved through the major parts of the service.  Midway through, our very very northwest-side-of-Chicago nurse walked in, and she saw him leading us in prayer, and she stopped, bowed her head and let him finish.  It was an extremely touching gesture, as though some of the institutional hegemony of the hospital had been pierced for just a few seconds by the common humanity of the liturgy.

Brooke and I were both in tears at this point, and so she waited until the prayer was over, and then made sure nothing had happened to Sam.  When we came to the prayers of intercession – a part of the service I’m usually very, very skeptical about (it seems like we’re supposed to be having some sort of cell phone conversation with God, which I can’t do) – when we came there, I prayed aloud, meaning it probably for the first time in my life.  What I said had as much, if not more, to do with the woman I had seen in the blood-work lab the morning before, than it had to do with me.  I said “I pray that everyone finds the help for their baby that they need.”  Because as trying as what we had been through had been, I wasn’t praying for myself or for Sam.  The thought didn’t even occur to me.  I knew we were getting every last bit of assistance possible, even the most ever available in the history of humanity, give or take, and that was all I could ever ask for.  But I also knew there were millions of people out there like that woman, with little babies that they were on their own with, and I deeply and honestly prayed for them.  I didn’t actually finish my sentence, as I burst spontaneously into fresh tears.

I remember quite clearly the day I finally figured out that I wanted for Brooke and me to have a child.  I was coming home on the train, and I was listening to Beethoven’s 5th Symphony on my headphones.  As the third movement burst forth into the fourth, I wept tears of joy.  Somehow in that moment I thought about my father and finally saw what he had done for me.  I circled around and around on an image my mother has shared with me of the summer after I was born.  They went to Ravinia several times that summer, and my mom remembers my dad carrying me around in a pack, and lots of people smiling at me and him.  And I thought – I have to do that for someone.  I have to have that with someone.  I also thought – just for one fleeting moment – that I understood the resurrection.  The third movement is Maundy Thursday and Good Friday; the fourth surges forth with such Easter exuberance that I cannot always handle listening to it. It is honestly too much.  But on that night, sometime last spring, I thought, somewhere between understanding my father, and even for that instant understanding the mystery of faith – I thought, I felt –  “of course, we must have a child.”

As I reflect back over these days in the hospital, I feel the same sequence, from the pensive anxiety with which the third movement  gives way first to the playful hint of the resolution you find in that movement’s center (it’s a bold melody that comes out of the bass section), then back to the anxious brooding, and then finally to the greatest of all C-major fanfares in the history of music.  Through these days, I felt that movement over and over again.  Echoing the language of the seder, from darkness to light, from slavery to freedom, from labor to delivery, from apneic crisis to the hermetic peace of the NICU, from the terror of learning that my son’s heart sounds wrong to the equanimity I found in the cardiologist’s simple drawing.

As I said, with Beethoven, I can only handle that – in music – so often.  In life – in the first few days of Sam’s life, I had no choice.  I had to handle it.  The passion I have found in the music, and in my son, though, was – and is – utterly overwhelming.

This entry was posted in Uncategorized and tagged . Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *