Heart Baby

Sometimes I think of Errol as just an RTS kid. I think of his cognitive disabilities and forget about the fact that he is a heart baby, too. I got a call from Cary today around noon. She was on her way to Errol's school (at about 70 mph). Errol had turned blue and his sats (oxygen level) had dropped (to about 70). We knew that heart babies could turn blue, but it had never happened to Errol before. The teachers were freaked out, and the school nurse had called the ambulance which was en route. As Cary flew to Errol, I ran home (literally), jumped in the car, tore off to get Owen, and then raced to find Errol. Cary had, by now, gotten to Errol who had recovered from his first cyanosis (episode). As Cary, the teachers, nurse, and paramedics checked over a newly recovered Errol, he started his exit again and they all decided it was time for a trip to the Emergency Department. By the time I got Owen, jetted to Errol’s school, dropped Owen at my parents’ (thank god for grandparents) and caught back up with Errol, he was fine (again) and loving having the time of his life in the emergency department (his fifth or sixth visit-do they award frequent flyer miles?). Errol loves the fluorescent lights which there is no shortage of in the ED. Two hours, three nurses, one resident, our favorite nurse practitioner, Errol’s cardiothoracic surgeon, a five hundred dollar deductible, one bottled water, a well of emotions, and one attending physician later it was time to go home. There was nothing wrong with Errol that a little sleep couldn’t cure. But we weren’t complaining. Errol was healthy and home, and that is no small thing. Errol is an RTS kid, but he’s a heart baby too. That, we won’t soon forget.

Kissing Errol

Errol’s been held for most of his waking life (perhaps it’s a record). He’s rarely awake and out of someone’s arms. He loves being held, touched, and kissed, but I’ve recently felt that he wanted to be on the giving end rather than always receiving (How did I know a thing like that? Have a baby, believe me, you’ll know). It was Errol’s turn to give. I turned my face to Errol so he could give me a kiss. He closed his little lips around my cheek. It must be a coincidence, a reaction, I thought. I did it again. He closed his mouth into a kiss, again, but this time, the kiss was followed by a squeak of pleasure. I offered him my cheek again, and he kissed and squealed again. We were onto something. After five minutes of kisses, it was his mother’s turn. The kisses and squawks of joy were repeated. Happiness is all around us, if we are just patient enough to let it be.

Singing with Errol

Like his father, Errol’s older brother Owen is obsessed with the Beatles. In the car, we listen to In My Life over and over (five times in a row is our record). I still love the song.
I was singing a different Beatles song to Errol tonight. “it’s getting better all the time-better, better, better.”
He looked up into my eyes then locked onto my mouth as I sang, “It’s getting better all the time-better, better, better.”
Errol grinned (he didn’t have gas, it was the real thing.)
“Since you’ve been mine. Getting so much better all the time.”
Errol sang back. “Mmmmmmmmmm.”
His was no soaring Beatles harmony, but he had the idea of a call and response, and he replied to the song, “Mmmmmmmmmmmmmmm!” with a happy urgency.
We continued singing the chorus for a few minutes. There may be more efficient ways to communicate, but none with more feeling than Errol’s song.

First Night

As soon as we got to the Neo-natal Intensive Care Unit (NICU-everything has an acronym at the hospital) they wheeled The Little Man (TLM) back to stabilize him and prepare him for who knew what. We were told to stay in the waiting room while the doctors and nurses worked on our boy and that we’d be called back to see our son in a while (the first of many excruciating whiles). It was around 11:00 p.m. and Errol was about nine hours old. Our families were all there (mothers, fathers, brothers, sisters-seven in all) with food and drinks for us, serious looks, and guarded optimism (which they were wise to keep quiet about). There are many heroes in Errol’s life story, and after The Little Man himself, chief amongst them is Cary. Stoic Cary had been awake for two days, in labor for twelve hours, delivered a nine pound son (that’s the size of a watermelon, folks) without a drop of medicine, hoofed it over to the hospital, grieved over her new son, and all without a bite to eat, and nary a complaint. Think about that the next time you are griping about the copy machine not working or the price of gas going through the roof.

We tried to sit down and eat something during this horrible intermission. I kept pacing around and looking at the clock. Our families tried to be upbeat without being too upbeat (it’s a delicate balance when a life’s in the balance). Finally, a resident came out and ushered us into a consulting room. They usually try to prepare you for bad news so that you have a moment to imagine the horrible before you get the knock out punch. I figured she was softening us up for the real doctor who would give us a real battering. The resident told us that we would see a pediatric cardiologist in a minute who would have a diagnosis for us. We didn’t know what we were dealing with (bad heart, bad lungs, bad nervous system, slow start?) so we asked some general questions, to which she gave us some general answers. Then she hustled back to the NICU and told us that the doctor would see us soon.
I was feeling frantic and more than just a little bit guilty for bringing a child into such a painful world (it’s hard enough when you have good health). I was feeling grim. Things must be dire or they wouldn’t send in a highly specialized doctor at midnight. I wasn’t sure if Errol was going to live through the night.

As we pondered all the possibilities we were called back to the NICU. Before we could see our baby or the doctor we had to go through a very strict washing protocol. Under supervision, we took off our rings and scrubbed with surgical soap and hot water up to our elbows. Then, without touching anything, we dried our hands (there isn’t a whole lot of handshaking going on in the NICU). The room was bright (but not cheerful) and full of constant beeps and bings. It was divided into pods, each crowded with very sick babies. We were escorted toward Errol who looked wan and tiny in his hospital bed. He was full of IV lines, tubes, and was attached to a breathing machine. We cried and cried and touched him gingerly, taking care not to unplug him from the machines.

We met Errol’s nurse (each nurse has an average of two babies) and then the doctor walked over. Dr. Cnota held our future in his hands. He was about to tell us the most important news I would get in my whole life. He began by drawing a diagram of the heart. He explained that he had already seen slides they had taken of Errol (they don’t mess around in the NICU), and that his right ventricle had not formed (this sounded bad, but in the haze I was in, I couldn’t tell a heart from an apple, and I certainly couldn’t remember what the right ventricle did). I nodded. Dr. Cnota explained that Errol had a serious heart defect called pulmonary atresia (there is a link to a web site with information about this heart defect on the links list to the top and right of this screen). He drew a diagram of a normal heart and then one of Errol’s. The comparison didn’t look good for Errol. We listened to all the details trying to catch some hope in the web of anatomical data, but it sounded dire. Finally I stopped Dr. Cnota and said, “Doctor, this doesn’t sound good. Is he going to make it? Is there anything you can do?”
Dr. Cnota turned to me and gave me a confident smile I wasn’t expecting. “Oh yeah," he said. "We’ll take care of this.”
After ten hours, I exhaled. “He’s going to live?” I asked.
“We have a surgery for this. You’ll meet Dr. Hines in the morning. He’ll fix this. He does it all the time.”
I couldn’t believe it. Our baby, on the edge of death, wasn’t going to die tonight, maybe not tomorrow. I felt like I had just received a stay of execution. I cried. Cary cried. The doctor didn’t cry. We held each other (just Cary and me). By the time we left Dr. Cnota and touched Errol goodbye (we couldn’t hold him) it was 3:00 am. We had to be back to meet the surgeon in about four hours. We were drained and exhausted and we had just begun the race, but Errol was alive.

Lessons

Errol has taught me a lot about life (some good, some bad, all important). You can leave a comment at the comment space below about what the Little Man (Errol) has taught you. I've included a photograph of Errol, because he is, of course, not just a lesson. He's a living, breathing, adorable baby boy.

Hanging by a Thread

In genetics, Errol’s defect is referred to as a spontaneous mutation. In his earliest embryonic days, gene 57 misfired and then replicated itself over and over again. It’s amazing what a difference one little gene can make (they are smaller than you could even imagine) in our ability to walk, talk, think, floss, or even for our heart to beat just so. It’s astonishing that one little genetic misfiring can exact such a price, then again, when you think about it, it’s amazing that any of us are here at all. After all, a lot has to go right for anybody to be breathing, and I think it would be fairly safe to say that in the big scheme of things, we’re all just hanging by a thread. If the planet were just 5 degrees warmer, we probably wouldn’t be here (or not for long); if the mix of carbon and oxygen on the earth were just tweaked a bit one way or the other, none of us would be breathing; and in the course of human history, if our great, great, great, grandfather hadn’t (insert family history here) been walking down the street when our great, great, great grandmother went flouncing past, what seems so inevitable, wouldn’t have happened at all, and we would be (or not be) history. We are very lucky to be here in this most improbable moment. Enjoy it, I say, and Errol certainly is, because despite gene 57 most egregiously compromising the Little Man’s (Errol’s) bodily functions, it hasn’t taken away one ounce of his happiness.

Safety in the visible

Errol has brought a great deal of mystery into our lives. So many of our expectations about life and death have been shattered. The safety of the normal has been replaced by a new world we have entered with great trepidation. A.R. Ammons has this to say.


Epiphany

Like a single drop of rain,
the wasp strikes
the windowpane: buzzes rapidly
away, disguising

error in urgent business:
such is the
invisible, hard as glass,
unrenderable by the senses,

not known until stricken by:
some talk that
there is safety in the visible,
the definite, the heard and felt,

pre-stressing the rational and
calling out with
joy, like people far from death:
how puzzled they will be when

going headlong secure in "things"
they strike the
intangible and break, lost,
unaccustomed to transparency, to

being without body, energy
without image:
how they will be dealt
hard realizations, opaque as death.


A.R. Ammons

A new son

We always knew there was something developmentally wrong about Errol. At first, we put it down to his heart. Later, we figured he had lost time in the hospital that he’d catch up once he was home. Always, we were hopeful for Errol, but there was a nagging fear that Errol wasn’t quite right. The more I worried about Errol, the more I would argue with Cary that Errol was fine, and the more I would hold on to any tiny thing that might bolster my theory that Errol was going to be fine. The less I believed it, the more I argued it (argued myself really). I was desperate. Cary was desperate. We could see through our own hope, and others were too nice to argue with us. On top of it all, we were so wound up with his heart problems, surgeries, and hospitalizations that we could tamp the deep dark truth about Errol's cognitive abilities down into our heart of hearts.

Then it was my birthday (#38). Errol was still in the hospital, so Cary and I had plans to celebrate my birthday amidst the machines, nurses, residents, and doctors. We needed an antidote to our misery, and after all, we weren’t going to let reality get in our way of a good celebration. At the same time, I was working (it was my first week of a new job) and Owen hadn’t started school yet. It felt like we were juggling thirty eight pins.

So on this day of celebration, after a full day of classes, as I was preparing to leave work, Cary called me in my office. She had been to the geneticist. She had a diagnosis to share. As soon as I said hello I could hear Cary's sobs. I girded myself for the worst (I was practiced by then) Cary sounded absolutely depleted.
“Tell me.” I said.
“I talked to the geneticist. It’s not good. Errol has a serious syndrome called Rubinstein-Taybi Syndrome.”
I swallowed hard. “What does that mean?” I asked. I wanted to know fast.
“It means he’s retarded." Cary cried out.
I had imagined this diagnosis for a long time, but that didn’t make it any better.
“Oh my God.” I started to cry.
Cary and I cried together and then she continued with the diagnosis. Hoping to soothe me with the facts. “The syndrome means he’s got a very low IQ. The heart defect is part of it. He’s going to be developmentally delayed.” Cary went on with more important details, but I couldn’t hear past the verdict: retarded. It was true. The more we talked, the longer before I couls be with her and Errol. I got off the phone and walked down the hall with tears running down my cheeks. I felt like I had lost someone (the son I had expected), but in fact, I had lost something I never really had (just hoped against hope that I did). I drove to the hospital way too fast and when I got there I kept my eyes to the floor as I headed to the sixth floor. When Cary and I embraced we cried and cried and cried-each comforting the other. Errol wasn't sad, he just grinned. Nothing had changed at all. It was that rainy last day of August on the 6th floor of the hospital that we started a new life with our new son.

Gratitude and Compassion

There is a meditation practiced by Tibetan Buddhist monks that focuses the mind on gratitude and compassion. As you open yourself to others (giving and taking), you become most fully connected and human. Every morning as I walk to work I try to think of all those I should be compassionate towards, and then I list all the things I have to be grateful for. It’s a very long list.

Errol has taught us a lot of things. One of the most important lessons we’ve learned is how kind and generous people can be. Since his birth people have done many things for us, over and over.

Mowed our lawn
Brought us wonderful food
Folded our laundry
Given us money (a fund was set up for our medical expenses)
Brought us more food
Cleaned our kitchen (it needed it!)
Held baby Errol in the hospital (he was alone for about 15 minutes during his two plus months in the hospital)
Brought us movies to watch
Took us to dinner
Babysat (every night, a babysitter would stay with sleeping Owen so Jonathan could visit Errol and Cary in the hospital)
Hugged us
Washed our dishes
Prayed for us
Babysat again
Sent us presents in the mail
Listened
Brought us coffee
Left us treats on our porch
Learned about Rubinstein-Taybi Syndrome
Cried with us
Bought us drinks
Took Owen to school
Wrote us notes
Brought us flowers
Thought about us
Played with Owen
Made Errol blankets, hats, and clothes
Took our dogs on walks
Visited us
Cooked us more dinner
Asked us questions
Held us in the light

I will never be able to pay back these many personal kindnesses, but I will try my best.

Similarities

In many ways, Errol’s older brother, Owen, is a whole lot like us (his parents), except wigglier. I’m really not sure how much Errol is like us (we don’t like baby formula). Sometimes it seems like Errol is a son of Rubinstein-Taybi Syndrome more than he is a son of ours. Not that we don’t love him, we do, perhaps all the more because of his syndrome, it’s just that he doesn’t share a lot of traits with us (or look a whole lot like us – to his benefit, paternally). It’s not that we aren’t sweet and happy like Errol (his mother is sweet), it’s just that the commonalities stop there. (then again, it’s not like typical infants are a whole lot like their folks either. They mostly just do the big three: eat, sleep, poop). Perhaps when The Little Man gets older we’ll start to see more of us in him After all, Errol's older brother Owen only started to really resemble our personalities after he was a year old. In a way, it doesn’t matter at all. Errol has a Mohawk, and that should be enough for any adoring father.

This is a photo of Errol and the panda his grandmother, Luly, got him for Christmas. That's Errol in the foreground.

The Happy Gene

Here's a happy picture of Errol. He was dressed as a duck for Halloween (not his choice). You might think that the reason almost all the pictures of Errol are happy is because we just don't take pictures of him when he's sad. The truth is that Errol has what other parents of kids with Rubinstein-Taybi Syndrome call "the happy gene", and is almost never unhappy (it did happen once on October 11, 2007). How'd you like to be vacinated against sorrow? Errol seems to have been. Here's the proof.