Unfortunately, the morning after the worst day of my life did not wake me with a sunny disposition and hopeful heart. I was a battered woman. Beat up by my emotions, by the events of the preceding day. I had to force myself to get out of bed, to go see her at the hospital. If she was still in that broken body somewhere, she needed me. She needed to know that I had not given up, although on the inside I nearly had. She needed faith, prayers, strength. And I would give her everything I had in me.
We trudged through the frigid air and into the warm hospital. This place was so inviting...so welcoming...how could my daughter be dying upstairs? Did the people in the lobby not understand what was going on here? Most of them did, all too well. Parents of children with deformities, defects, kids in wheelchairs...they were all a normal, daily sighting here. This was where they brought their children too, putting their faith in doctors they had only read about. I soon became aware that this was a place full of miracles...that children throughout the world were sent here for treatment. If she was going to die, at least we brought her to the best place possible for what she needed.
The Cardiac ICU smelled of Purell and antiseptic, to this day a smell that immediately brings me back to those metal doors entering the unit. We were let back to see her. There she lay, as she had the night before, still looking almost unrecognizable. Her room was busy. She was under the constant supervision of nurses, therapists, and ECMO technicians. They worked tirelessly to balance the machine's capabilities with what her little body needed to survive. We learned she had lost over ten units of blood throughout the night, and she was being transfused almost hourly. There was still a source of bleeding somewhere, and it needed to be found and stopped quickly. We were taken to a private room, where her surgeon discussed the need to do a heart cath to look for the source, and then most likely go back to the OR to stop it. We agreed, as this was our only hope. We signed the paperwork, being made well aware that the risks listed on the top of the page simply said "Death."
We learned that morning that her cardiac surgeon had cancelled a speaking engagement somewhere out of the country to stay and care for Marin. The thought of this humbled me, and made me realize how important she was to everyone...not just us. He was determined to stay and try to fix her.
After the cath, we were told they "thought" they had identified the source of bleeding, and needed to go back to surgery to redo her repair. Before we left the consultation room that day, my amazing husband did something I will never forget, and something that I have no doubt played a huge part in that surgery; he asked our cardiologist and surgeon to pray with us. They graciously accepted. We sat, holding hands with these Harvard-educated and world-renown physicians, humbly asking God to heal our daughter. I left the room in tears, humbled by these two brilliant men.
Toward the late afternoon, we spoke with her surgeon again. He had successfully stopped the bleeding, but her heart was still in very critical condition after what it had been through. Dr. Mayer uttered a phrase that we would hear almost daily for the next few weeks..."She's not out of the woods yet." He refused to give us any optimism until he himself was able to feel some. I was heartbroken still, but thankful for his honesty.
The next week was full of setbacks, and a few small steps forward. Her body was so swollen from all of the fluids given during and after surgery that her heart and lungs still were unable to function on their own, and she remained on ECMO for seven days. This terrifying machine was the only thing sustaining my daughter's life. I became so grateful for its existence.
That first week dragged on. Every day was a routine of waiting for improvement, and it came very slowly. She remained sedated and paralyzed with her chest open. We weren't allowed to hold her while her chest was open, but we kept a vigil at her bedside, quietly reassuring her that we were there. Jacob's parents reluctantly headed home. We found things to do to occupy our minds and bodies. Playing video games in the hospital lobby, going out to dinner, taking walks around downtown Boston. Marin was always at the front of our minds, and only a phone call away. We entrusted her life to the wonderful staff of Boston Children's Hospital.
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