Rain poured as we woke early on the morning of October 29, 2007. We were to board a plane bound for Boston, Massachusetts in a few hours. Jacob pulled the car up to the stairs near our apartment as we prepared to leave for the airport. I said a silent goodbye to our warm and comforting apartment, hoping that the next time I entered I would still have Marin in my arms. That thought seemed too good to be true. How could someone so small survive what was to come? It seemed impossible.
We rode silently in the rain, but I knew we were both screaming inside our heads with anger, sadness, frustration, fear. Jacob later told me that he'd already planned to ask his mom to come to our apartment and take all of the baby stuff out before we got home if Marin didn't survive. I had silently pondered funeral arrangements for her, knowing that if I voiced my fears I would crack. I was drowning in my thoughts. Jacob wore a facade of strength and faith, and I looked to this for comfort. He always knew what to say to reassure me at my darkest times. He still, and has always, knows me inside and out.
We arrived in cold, dreary Boston that afternoon, after many compliments on the plane of what a good baby we had. She didn't fuss once. The winding, confusing city had us lost within minutes, but we finally made it to our hotel. I wanted a stiff drink and some food, trying so desperately to pretend we were tourists in this beautiful city, rather than taking our child to her death.
We arrived at Boston Children's Hospital first thing the next morning for a long day of xrays, echocardiograms, EKGs, blood draws, and paperwork. We met the man that would come to be our hero, Marin's cardiologist Dr. Roger Breitbart. After performing the echo, he informed us that her anatomy was a bit more complex than seen on a previous echo, but still reassured us that although the surgery might be a little more difficult, she would be fine. I tried to believe him.
Since she was so small, the decision was made to admit us to the hospital so she could be monitored overnight before her surgery. Our families flew in later that day and met us at the hospital. My mom and brother had come, along with Jacob's parents, to be with us for the surgery. We said our goodbyes for the night as they left for the hotel, and we settled into the hospital room. That night is still so vivid in my mind. There was one chair that folded out into a "bed," and though against hospital protocol, Jacob and I were both allowed to stay in the room with her that night. We cuddled together with her in the middle, praying this wouldn't be our last night with her. We were given an antiseptic soap sponge to wash her little chest in preparation for the surgery. I stared at her chest, admiring her smooth skin, trying to picture the scars that would soon be there. We soon fell into a restless sleep. I was woken once around midnight to breastfeed. If I had known it would be the last time, I would have enjoyed it more, savored every second of that intimate bond between us.
The next morning came all too quickly. It was October 31, Halloween. Our families arrived back at the hospital. We met our surgeon, Dr. John Mayer, and after a prayer by Jacob's dad, it was time to go. I carried her to the elevator, and we rode quietly to the pre-op area. Jacob and I held her and kissed her one last time, and then handed her over to the surgery team. I lost it. He embraced me tightly, and reminded me to have faith. God had brought us together and given us this special child, and He would take care of us.
The surgery waiting area was full of families. It was a busy place. We checked in and were introduced to our nurse liason, who would come to us with updates during her procedure. Then, we waited.
I took a sedative, and tried to sleep on a couch. Our families tried to encourage us and lighten the mood with jokes and stories, but I only wanted to sleep, and to wake up when it was all over and I could have her back. Minutes turned to hours, and the first few updates were positive. Then, things took a turn for the worst, and Dr. Breitbart came out to speak with us.
He told us she was bleeding severely when they warmed her up, and was not able to come off of bypass. They were going to cool her down again and attempt to find where the blood was coming from. Several more hours went by. We were now the only family left in the waiting area, and it was after 6 p.m. Surgery began at 8 a.m. Dr. Mayer and Dr. Breitbart then came out to speak with us. Marin was still bleeding, and was unable to come off of bypass. She was transferred to a machine called ECMO, which would route all of her blood out of her body, through a machine, then back into her. The machine essentially took over the work of her heart and lungs so they could rest. They were very honest, and let us know how critically ill she was. Dr. Mayer was visibly worried, and did not seem confident of her survival. He told us he had seen worse babies recover, but not many. Our worst nightmare had come true, and we knew we might lose her.
We waited several more hours as they transferred her with all of her new machinery to a room in the Cardiac Intensive Care Unit. It was finally time, and Jacob and I went back to see her.
It was so far worse than I could have imagined. Her chest was left open due to swelling, and every inch of her body was covered in some form of IV or monitoring device. ECMO cannulas in her neck and groin, four chest tubes, temporary pacing wires, three or four IVs, two arterial lines, a ventilator in her mouth, gastric tube in her nose, and brain monitor on her forehead. She looked dirty, and blood had dried on her skin and in her hair. This was not my baby. This was not the clean, content little girl I had handed off just twelve hours ago. Once again, I broke down. Jacob and I held each other, and tried to cope with this new version of our child. We went close to the bed, and could see her heart beating through the thin film that was over the opening in her chest. We stroked her hands, her legs, and let her know we were there, and that we loved her. We said a prayer, and left so our relatives could come back to see her.
We left the hospital and headed back to the hotel. That was the worst day of my entire life, and I pray that nothing will ever surpass it.
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