Angel.

Thursday had been a good day.  At some point in the early morning his kidneys started to function and he had his first wet diaper.  We felt greatly encouraged; maybe things were finally starting to stabilize.  Maybe the intensive treatment he was receiving was starting to run its course and do what it was intended to do.  Maybe he was healing just as we were all hoping he would.

Over the course of that day, his blood gas (tests that monitor oxygen and carbon dioxide in the lungs) was a bit more stable and he was more animated.  He fought his nurses when they tried to change his tubes or check his vitals.  And he seemed to be spring-loaded with energy.  Due to the cords from his ventilator, he had to lay flat on his back but he positioned his arms to his sides with his hands by his head, clutched in tiny fists.  He looked strong, stalky, and so much bigger than his 6 1/2 pounds; as if he would walk off his open incubator if he could.

But that night, he had his first seizure.  And as we talked to his doctor on Friday morning I was hit with a reality that I had been forcing myself to avoid.  Perhaps his condition was as serious as his team of doctors, nurses, and brain specialists had been telling us since his birth.  Maybe he was as sick as they said he was.  And although I tried hard to ignore it, it was at that moment that the probability of his death crept into my thoughts.

I do not remember much of that Friday but I am sure it was filled with more tests, phone calls, and hopeful reassurances.  We received some important visitors that day.  Friends, family, and church leaders who all came to impart love and hope.  They brought us messages of peace and told us about other children who had been born in similar circumstances who were now grown and were functioning, healthy adults.  And although we were hesitant to leave his side that night, we left in good spirits and were trying our best to be brave.  We were focused on the big test that was going to be administered the next morning, the test that we had been waiting for with baited breath.       

After his birth, Henry was taken to the NICU and placed on a cooling blanket (known as the THAPCA study).  Since he was not breathing when he was born his doctors suspected that he had been without oxygen long enough to be in danger of organ failure.  The THAPCA blanket would cool his body down and hopefully slow the progression of damage and help restart his systems.  His team would use monitors, blood tests, and other scans to determine Henry's condition but an MRI would be the definitive diagnostic tool to let us know how he was really doing.  But being on the THAPCA meant that Henry had to be resting on his blanket for 72 hours to give his body enough time to heal.  And so, for 72 hours after he was born we spent time with his nurses, his doctors, and with our family, and we thought about the MRI and what we would find.  As the days went by and as the seriousness of his condition started to become more clear, I hoped that whatever the news was, that it would be something that we could work with.  That even if Henry had lasting effects from whatever happened before or during his birth, that we would be able to take him home and provide him with a full and happy life.

And then, finally, it was Saturday, February 13th.  And it was the day of Henry's MRI.

It was still dark when we got to the hospital that Saturday morning.  We had not slept well.  I had to get up in the night to pump and Rob called the NICU at regular intervals.  We were restless, anxious, and eager to be by his side.  And most of all, we were hungry for good news.

Henry's MRI was to be performed that morning at Primary Children's Hospital and so a team of Life Flight nurses came to transport him between hospitals.  I was still not able to walk very quickly so Rob pushed me in a wheelchair as we followed our baby through the quiet halls and tunnels of the hospitals.  In a small waiting room, we prayed and hoped that Henry would not be too uncomfortable during the procedure.  Henry was particularly sensitive to noise and we worried that the rattling of the machine would cause him to seize or make it difficult for him to breathe.  And I think that in some ways I felt that his behavior in the test would reflect the results.  If he reacted well, then everything would be fine.  If not, then... After what seemed like hours, the team emerged around the corner with Henry's isolette.  He did well and handled everything beautifully.  Relieved, we went back to the NICU and were told that we could expect to receive the results later that afternoon.

But as time wore on that day, we intuited that something was not right.

After his MRI, Henry had been moved off of the THAPCA blanket and out of the first room in the NICU.  He had his very own room in a quieter part of the unit.  Initially, I took this to be a good sign since the babies moved rooms in the NICU according to their needs.  The first room was for the smaller, more critical babies and the fact that he moved rooms seemed to indicate that he was progressing.  His sweet nurse had changed his bedding after his return and he was lying on a green blanket with little frogs.  And although we had yet to hold him since he was still intubated and needed his ventilator, it was the first time we felt comfortable really touching him.  

We then met in Henry's room to learn the results of the MRI.  The neonatologist who had been working with Henry since his birth was off that day so we met with a new doctor, a nurse practitioner, and a fellow to talk things over.  The results of the test were conclusive and they were devastating.  The time that Henry had been without oxygen, however long that may have been, had proven to be fatal and he had total brain damage.  We searched their faces for hope.  For the possibility of eventually taking him home but we found and received none.  The neonatologist told us that Henry could very well live on the ventilator for an indeterminate amount of time but there was no telling how long his body could last.  He was already getting the highest level of adrenaline to help his heart and he could not receive any more.  As he was at that moment, he was in danger of going into cardiac arrest.  They told us that we did not have to make an immediate decision but we would need to decide what to do if Henry got into trouble.

What happened over the next few hours is understandably very personal but most of it occurred in that room and all of it was motivated by love.   Our little Koelliker family embraced for the first and last time and we said our goodbyes.  Since Henry came on his own time (he was three weeks early), we decided to take him off of his ventilator and let him leave on his own terms.  And Rob and I were both cradling our son as he took his last breath. 

I have seen many things since that fateful day but I never wanted to see that room in the NICU ever again.  I hoped that shuffling out of those doors on that February night, numb with grief and dumbfounded by loss, would be the very last time.  Or that at the very least, that I would never go back there until I was fully ready.  But life had other plans.  And we were regular visitors in the very same unit that Henry lived and passed away in for almost nine weeks after Eddie was born.

And so, on the night before Eddie came home from the NICU we decided to revisit Henry's room.  It was vacant and we felt like we needed to take the opportunity to pay our respects.  Eddie's time in the NICU was so unlike his brother's.  We would be walking through the double doors the next day with everything that we had hoped for coming into it.  Everything that we so desperately wanted for both of our sons.  We knew that we had a lot of people to attribute the miracle of Eddie's life to, but we always felt like Henry was a constant and silent advocate for his brother's well being.  And as we approached the room that night, the lights were off and everything seemed to become very still.  In silence, we took our time looking around.  It was being used as a makeshift conference room at the time so there were no beds or isolettes inside.  And as we stood there, I inwardly hoped for some small sign, for some clue that Henry knew we were there at that time and in that moment to pay tribute to him.  I searched the room trying to find something to provide me with comfort but came up short.

And then, Rob found it.  

On the wall opposite the door was a laminated sheet of paper that the nurses put next to babies' beds.  These sheets show the baby's name, doctor, nurse, and the goals that that baby has for the day.  This one particular sheet happened to be on the exact same wall where Henry's bed was placed on the day that he passed.  And it still happened to have some information on it for the baby that had just left the room a couple of days before.  The names were all standard and meant nothing to us, but the goal stood out and happened to say, "good night's rest."  We hoped that whoever that baby was who was in Henry's spot and in his room had indeed had a good rest on that night.  But more than that, we knew that wherever he was, Henry was resting.  That he was at peace and that he was very much aware of us.  

But I believe that Henry did not rest for long because, much like his papa, he probably went to work almost immediately, and did the thing that he knew how to do best.  He started to protect his family.  

I believe that he is our angel.  That he will always be Eddie's older brother and our son.  And I believe that some day we will see him again.  Until then, we will think of him each and every day, but particularly on the day that he earned his wings.

Happy angel day, sweet, sweet Henry.  We love you so very much.