Sweet Ethan's Story

My Sweet Ethan,

You were born on May 19, 2012 at just 28 weeks 2 days.  I was sitting on our family room floor folding laundry and my water broke.  It just broke.  It had unexpectedly broken (PROM they call it) at 27 weeks, for "no known reason."  My translation is "shit luck."  I was shocked that my water had broken.  You see, you were my 4th pregnancy and I had always made it to or past 40 weeks with big babies in tow (9 plus pounders).  So of course, you were going to be the same, maybe even come out the size of a toddler - at least that's what everyone joke about with me.

I rushed into the Brigham (in Boston) and was placed on complete bed rest (except for bathroom privileges) and told I was to remain in the hospital until I delivered you.  The "hail mary" goal was to make it to 34 weeks, seven weeks down the road.  I made it just 10 days, became septic and went into labor.  I delivered you by emergency c-section (my first section) and you weighed 3lbs 1oz and were 15.5 inches long, quite a large 28-weeker I am told.  You were immediately intubated, though I did hear you cry 1 time.  By all of the research Ethan, you had the same odds of surviving as a 40 week baby, though likely with significant needs.  You were taken straight to the NICU where the best neonatalogist in the country, specializing in lung disease in premature infants, just happened to be your doctor.

6 hours later I was in my postpartum room and heard a knock on the door.  The NICU attending came in and proceeded to tell your Dad and I that your lungh disease was grave, as was your prognosis.  Dr. Van Marter asked us if we wanted her to try to save you, as you may have suffered brain damage by that point.  We looked at each other and immediately replied yes.  That we would be happy to care for you and your potential special needs going forward.  You are our son.  We were very clear that we did not want you to suffer, nor did we want them to use interventions in an effort that was futile.  Dr. Van Marter said that she had one option, and that it was experimental for someone your age/size.  We asked her to try it and it saved your life that first night.  It gave us an additional 4 days to soak you in and for that, I will forever be grateful to Dr. Van Marter, Linda as she introduced herself to us.

Despite being septic & having a very complicated c-section I spent every waking moment at your bedside -- telling you of your 4 y.o. big sister Caroline, your 2 y.o. big brother Jackson and your 11-month-old big brother Ryan, all of whom awaited you at home.  I told you how proud of you I was, how honored I was to be your mama.  I would tell you to keep fighting, because life gets better.  I think you listened, as you kept fighting against all odds.  You're the youngest, so you would get spoiled- the way your father & I were.  There were great things like ice cream and the beach that you needed to experience.

You fought hard, but your little body had terrible lung disease, was battling sepsis and then suffered a catastrophic brain bleed.  The doctor's told us you would need an additional 2 chest tubes on top of the 1 already in place, etc.  That your body wasn't responding to any of the supports they were giving you.  Then the Children's Hospital neurologist told us the bleeding in your brain would leave your unable to move, blind, etc...you were telling us that you had had enough here on Earth.  We decided to take you off of life support on your 4th day.  That was the fist, and last time we were allowed to hold you.  (you had been too fragile otherwise)  Best, and hardest, moment of my life.

I sang "You Are My Sunshine" to you as I held you, the very song I sang to all of my babies.  I know you had heard me sing that to your brothers and sister while you were inside of me.  I thanked you for picking us as your parents, asked you to be our angel - especially for Jackson who can be a wild man of a 2 y.o., and assured you that when you closed your eyes you would open them to be in the arms of Jesus.

Tine of death - 5:55pm.          I'll never forget those words.  It was May 23, 2012.

The doctors, nurses and respiratory therapists all cried with us, prayed with us, loved you with us.

You are our 4th, and last, child.  On loan from God.  I know you looked just like Caroline.  Slepth with your arms above your head like she did, refusing to be swaddled.  You had the same nose as Ryan, Jackson and Caroline.  Were going to be even bigger than your brothers - 10 plus pounds if you had made it to full term.  You liked to hold your Dad's finger and to hear me sing lullabies - you heart rate and breathing would stabilize when you did.

Ethan Michael Gray, you will always be my son.  And I will always be a mother of 4.  Thank you for that.

Love and miss you,

   Mom