The most terrifying phone call ever

Dearest Hazel,

It's been a while since I last wrote to you, but really, it's all your fault.  You've certainly been keeping your mother and me extra busy.  It's hard to believe that it's been one year since you went in for open-heart surgery at 3-1/2 months old.  The only visible reminders are a few scars that remain on your precious skin.  I hope you will wear those scars proudly because they show just how much strength you have inside.  Of course, it wasn't an easy road to get here…

The doctors had told us that your surgery was quite routine.  Ventricular Septal Defects (VSDs) account for the vast majority of congenital heart defects.  Success rates with minimal-to-no complications are over 99% for this surgery.  Hazel will be back to normal in a few months.  It's not as scary as it seems.  Statistics are statistics, but you sure do like to be the outlier.  When we dropped you off that morning, we were told that you'd be out of surgery by 6PM.  I remember kissing your chest, knowing that it would be the last time I'd do so without seeing a scar.  At the time, that was our main concern – how you'd deal with it when you got older.  Would you be ashamed?  Would you be embarrassed?  I thought of all the things we'd say to you to get you through those tough moments.  That you should own those scars; wear them proudly, for you'd earned everything they represent.

Your mother and I walked to the row of restaurants on Irving Street, just down from the UCSF Parnassus campus.  I don't remember what we ate for lunch, but I distinctly remember the way we anxiously tried to talk about anything but how scared we were.  I think I had a beer.  We tried to window shop, to do anything "normal", but we quickly ran out of distractions and headed back.

When we returned to the waiting room, there were other families quietly sitting there.  I felt bad for them because I figured that the child they were waiting for was there for a much more serious reason.  I chose not to talk to them.  Your mother and I roamed the halls, looking at every notice, every staff photo, every handmade thank you note.  By 5PM, your mother and I were alone in the waiting room and we were getting antsy.  I remember every gut-wrenching moment.  5:30.  6:00.  6:30.  By 7PM, I knew deep down that something was wrong.  You were supposed to be out an hour ago.  From 6:30 on, I stood in the doorway, frozen half-way between your mother – who I so desperatedly wanted the strength to be able to comfort – and the hallway that I knew would bring us information, good or bad.

At 7:30, I heard the doctors talking before they came around the corner.  I'll go talk to her parents I heard Dr. Karamlou say to Dr. Peyvandi.  My heart sank.  I motioned to your mother and then watched as Dr. Karamlou approached.  The look on her face nearly broke me.  Something had clearly gone wrong.  I thought we'd lost you.  I braced myself for the news no parent wants to hear, determined to keep it together for your mother.  I think back to that moment, unable to sit, and for the first time in my life, I had nothing to say.  All I could do was listen.  I realized that no matter what the doctors told us, I couldn't bargain for something better.

Suffice it to say that we did not lose you during surgery (although this fact wasn't clarified for several tense minutes), but as the doctors explained the complications they'd encountered, we quickly realized that you were not in the 99%.  The VSD that was deemed large at 10mm prior to surgery was discovered to be 20mm – a development that caused phones to ring across the country as doctors in the operating room called every colleague they knew to determine how to proceed.  Complicating matters further, the hole was adjacent to your aortic valve, meaning that they could not close it entirely.  They explained that 45 minutes on the bypass machine is about as long as they want an infant to go through during open-heart surgery.  You were on bypass for a total of 75 minutes.  The doctors braced us by saying that when we saw you, you would look bad.  They opted not to close your chest because they were convinced that another surgery would be necessary, probably in a few days.

When the doctors returned to the operating room, your mother and I were left alone to wait for you to be moved to the pediatric cardiac intensive care unit (PCICU).  I was afraid to look at her because I knew I'd start to cry.  I wondered what all of this meant.  For as reassuring as the doctors were, there was nothing that could stop that voice in the back of my head thinking nothing but the worst.  We waited for another half hour before you finally came rolling down the hallway on your gurney.  You were heavily sedated, and despite the tubes the seemed to be swallowing you whole, you looked peaceful.  To be honest, I'd expected you to look much worse.  That was probably my first bit of relief.  We followed you to the door of the ICU where we were forced to wait for another hour until you were stabilized.  Eventually we were allowed in and I immediately kissed you.  Your skin was cold.  We sat with you for hours, asking questions, listening to everything the doctors and nurses said.  I watched the ECG constantly.  Alarms went off every few minutes and your mother and I would instinctively find a corner to get out of the way.  This is normal, she's doing great.

Around 1AM, the intensivist Dr. Tabbutt told us to go home.  She's sedated, she's stable, and you're probably not going to get another chance to get a good night's sleep in the next few days.  As badly as we wanted to stay, I think we agreed because it was all so overwhelming and we needed a chance to take a break.  We walked out into the crisp San Francisco night and drove home.  After an hour of whatever the hell we did, your mother and I laid down.  We set our phones to full volume and finally fell asleep.

Sometime around 6AM, my phone rang.  It was a PCICU nurse, and she asked me to hold.  Dr. Tabbutt, who we'd noticed was so incredibly calm in the few hours we'd spent with her, picked up the call and immediately I knew something was wrong.  She sounded agitated as she explained that you were having post-surgery complications and she need us to authorize them to use EKMO.  Throughout the many hospital visits leading up to surgery, I'd learned to ask questions.  What does this mean?  What are the alternatives?  What complications might there be if we pursue such-and-such course of action?  As I tried to ask a question, Dr. Tabbutt cut me off.  We don't have time for this.  I just need you to say yes.  The seriousness of her voice scared me.  I said yes and immediately the nurse took over the call and said that we should get back there as soon as possible.  I hung up and talked with your mother.  We both started getting ready.

And there was that word.  EKMO.  What the hell is EKMO?  Did I even hear that right?  I searched Google quickly.  EKMO.  Nothing.  EKMO HEART.  Did you mean: ECMO heart?  Ahh, yes.  And then I saw it: extracorporeal membrane oxygenation.  Life support.  We were at home, and you were on life support in a hospital across the bay.  I told your mother and we ran to the car.  We arrived at the hospital exactly 31 minutes later – a miracle and/or the product of the type of driving I hope you never do.  In its then location, UCSF Children's Hospital was serviced by an elevator bank of four cars that were ungodly slow.  Even in the middle of the night you could wind up waiting 5 minutes.  I don't remember how long we waited, but it felt like forever.  OPEN. THE. FUCKING. DOOR.  When we finally got to 7 North we couldn't go in to your room.  They were still operating on you, right there in the PCICU, and the room needed to be sterile.  We were directed to the waiting room, but people were still sleeping.  (Parents that stayed overnight were not allowed to sleep in the PCICU and regularly slept in the waiting room.)  We opted not to wake anyone and instead went to the kitchen.  Someone found us around 8AM and took us to your room.  As much as I thought you didn't look that bad when we'd seen you after the first surgery, this time you looked…rough.  Again I kissed your forehead and again your skin felt cold.  Colder, even.  Or maybe it was my imagination.

Early that morning, your heart had trouble healing.  Dr. Tabbutt explained that shortly after we left, you started suffering from junctional ectopic tachychardia (JET).  Basically, your heart was racing to 200-300BPM, for increasing lengths of time.  Eventually your blood pressure started dropping.  They had tried everything they could to stop it, but nothing was working.  By the time they called me, your diastolic pressure was almost down to single digits.  A few more minutes, Dr. Tabbutt explained, and your heart likely would have arrested and they wouldn't have been able to save you.  In a lucky twist, the earlier complications had later likely saved your life.  Because they thought further surgery might be necessary and had left your chest open, covered only by a medical patch, they were able to get you connected to the ECMO machine in under 15 minutes.  The 5 minutes that were saved by not having to re-open you was probably the difference that saved you.  And us.

Over the course of the next few weeks, you proved to be a fighter.  Your heart recovered as well as anyone could have hoped.  There were definitely some additional scares – every course-of-action has its complications – but you grew stronger every day.  There were seizures resulting from the medicine that was used to neutralize the blood thinner necessary for ECMO.  There were period of JETing that seemed to come from nowhere.  But then there was the day you opened your beautiful eyes again.  And the day we were allowed to hold you for the first time in a week.  Those memories may not push out the tougher memories, but I wouldn't have it any other way.  I want to always remember just how strong you were, through the good days and the bad, so that I can hopefully, someday, teach you what you've taught me – that even the smallest of us can be a giant.

Today, one year later, your heart is doing great.  As each checkup visit comes and goes, we're further encouraged that you won't need additional surgery.  However, you're still struggling with eating, a problem that developed as the congestive heart failure quickly set in months before we begged the doctors to operate.  It may take years to resolve, but your mother and I are so incredibly thankful to even have those years to spend with you.  Some days are harder than others, that's for sure, but even the worst days don't compare to the day we got that phone call.  I took this picture that day so I'd never forget not just the scare of losing you, but also your courage.  And while you'll never remember it, I hope we never let you forget.

Love Always, Dad (Dada)