Alex’s Story
I am at the final night of prenatal classes being held in the basement of the hospital. I’ve been the only “single dad” there for the past five weeks. My wife, Laurina, has been lying practically motionless in a lonely bed a few floors above since week 19 when “Baby A” tried to get through a shortened cervix. A voice that I have learned to listen to during the past few weeks of the class, had me leave tonight’s session early.
I found a fearful Laurina attached to a series of monitors. It’s time.
Shortly before midnight on November 29, 2006, at 24 weeks and 3 days, Alex and Andrew Panas make their long awaited, yet all too early entrance into this world. I’m introduced to my son, Andrew, when he grasps my finger. The doctor asks me to “cut the cord”. Having grieved the loss of a “normal” pregnancy, I overwhelmingly welcome a moment to feel like any other new dad should. I push Andrew up to the NICU while his team squeezes air into his little lungs. The last vision I have of Laurina is seeing her lying in the operating room as the medical team tries desperately to start Alex’s tiny heart.
Organized chaos welcomes Andrew and me as we enter the NICU. Minutes later, Alex is placed in the bed next to Andrew. Alex’s heart stops again and more compressions start. I’m shocked. Frightened. Helpless. Someone brings me a chair and a glass of water. Alex’s heart starts again. After spending a couple minutes with my new family, I take two Polaroid pictures of our boys and then take the photos to their mom who is just waking up in the recovery room. Through emotions I cannot describe, I can only say “They’re alive. You’re a mom!” It would be days before Laurina was well enough to meet the children she had given life to and brought into the world.
I wheel Laurina so she can see Andrew. She reaches through the tiny porthole and takes his hand in hers for the first time. His nurse asks Laurina “Do you want to hold him?” Is this even possible? Minutes later, he is placed on her chest. Never sure we’d ever get this moment, tears of fear and joy slide down her face as she feels the subtle movements of Andrew wriggling on her chest.
Things go fairly well the first week or so. Laurina is still quite ill, so I spend the nights sleeping on the floor next to her hospital bed. In between brief periods of rest, I wash breast pump equipment and deliver milk to the NICU. On day eight we face one of our most serious setbacks.
“There has been a change with Alex” says his neonatologist. We sit devastated in a dark, grey conference room with his medical team, social workers and spiritual care. Alex’s lungs are sick and he is on high frequency ventilation at 100% oxygen. He is paralyzed from the medications. “There is little else we can do medically. We recommend that care be withdrawn.” This can’t be. He’s alive! We don’t understand! We sob. I hold Laurina tight. Withdrawing care is something we just can’t be at peace with. “Can we let Alex decide?” we ask. Another physician shares a different, yet equally dire opinion. He asks “Has he ever been held?” He hasn’t. He’s been too sick. “You should hold him” the doctor says compassionately. Alex’s aunts and grandparents say their good-byes. Laurina sits in a chair. As a team of four lift Alex from his bed, his breathing quickens and his heart races. They rush to place him on Laurina’s chest. I take a quick picture of the three of us …even as painful as this moment is, I tell Laurina to smile. This is all we had ever wanted…to be parents and hold our children. Within seconds of his mom’s skin next to his, Alex’s vitals begin to stabilize. His oxygen requirements steadily decline until they settle at 35%. We hold Alex for eight straight hours. We hold him all weekend until we can no longer bear to see the letters “DNR” on his chart. Alex HAD decided. His journey would continue.
It was early in our journey when we were introduced to NIDCAP. I was initially surprised that there was an official acronym for this. Shouldn’t responding to their needs and cues just be a natural way of caring for children? I soon learned to appreciate what NIDCAP meant to the people who practice it and the children and families who benefit from it. Holding our boys in kangaroo care was the most special time we spent as a family. When they couldn’t be held, we made sure Alex and Andrew felt our touch as often as possible …especially during tests and procedures, which we never missed. Andrew’s first breaths were taken in the arms of his mother when he was extubated. Alex chose life the moment he felt his mother’s embrace.
Being thrust into the NICU experience is very overwhelming. It’s especially challenging for us dads. We want to fix what’s broken and feel helpless when we can’t. We do want to be part of the day to day care of our children…we’re just terrified. We are the guys talking about the hockey game to another dad …while washing our wife’s breast pump supplies. We are the guys falling asleep on the floor of a hospital room wondering if we’ll make our mortgage payments … but we just cannot leave our family. We feel we are expected to hold ourselves and our families together while the world around us crumbles apart. We appear strong but are the ones crying in a hospital stairwell when no one else is looking.
As Alex’s health continues to improve, Andrew takes a turn for the worse. As we watch the clock ring in a new year above Andrew’s bed, his medical team tries to stabilize him. We don’t even leave that floor of the hospital for the next 10 days until he is stable enough to be transferred to another hospital for surgery. We spend countless hours at Andrew’s bedside, or waiting outside of the operating room for the results of yet another surgery, test or procedure.
After six weeks of our family being separated by the river that splits our city, and our hearts, Andrew is reunited with his brother. Although 3 ½ months old, we celebrate their “0” birthday party on their due date. This would be the happiest day the four of us would ever spend together. For the first time we allow ourselves the belief and hope that our entire family will all come home one day soon.
Two weeks later I am awake two seconds before the phone rings. The compassionate voice on the other end says “There’s been a change with Andrew, you need to come in.” Within minutes we are in the unit looking at our sick little boy. How could this be? He was doing so well yesterday! The doctors can’t explain it. They suggest we transfer Andrew back to the other hospital for surgery to see what is happening. Without any hesitation I say “We have to stop!” Everyone, including Laurina, is taken aback by my response. I picture Andrew dying all alone in the ambulance on the way to the other hospital. “If he is to die, he should do it here. With his brother. With us. With his family.” Seconds later, a nurse walks into the conference room and says “you need to come now.”
“Give me my boy!” exclaims Laurina as we both rush into Andrew’s pod. He’s quickly placed in her arms. His medical team keeps him breathing long enough for us to say all we need to say. We tell Andrew we love him. We’re proud of him…and he’s our special little boy. Yet there never is enough time. You’re always left with words you should have said. I nod to the respiratory therapist to stop squeezing the bag. She steps back with tears streaming down her own face. I take comfort in this. The monitors are turned off. As the leads and tubes are removed, one by one, Andrew turns into our perfect little boy. Within minutes his breathing fades and his heart stops. He falls asleep forever in his mother’s arms. I’m seated next to them with Alex in my own arms. We are surrounded by the rest of his family (of which include not only his aunts and grandparents, but the staff who cared for Andrew in the only home he’s ever known).
Today, Alex is an active, happy and healthy six year old who’s left his medical challenges long behind him. He loves to travel the world with his mom and dad. He is curious and adventurous and never short on questions of the world around him …and his brother, Andrew. All queries we are only too eager to answer. Yet, it is my boys who continue to teach me. They’ve shown me a world of unconditional love, determination and compassion. They showed me how to look for what is possible rather than what cannot be. And above all …they showed me how to never lose hope.