Yesterday evening, Hope finally received her perfect heart. She fought hard and waited patiently for God to provide a new heart for her here on earth, but last night He chose to take her home to Heaven instead. It happened quickly and was not only shocking, but truly heartbreaking for our family.
On Tuesday morning I arrived at the hospital and found that Hope was more lethargic than the day before. She did not look well and was fighting to stay awake. She threw up a little and had some diarrhea as well as poor colour and no energy.
The doctors decided to draw some bloodwork and the initial screen showed that her inflammatory markers were sky high, likely the sign of an infection. As soon as she spiked a fever, antibiotics were started which required a new IV and an echo of her heart was ordered. The culprit was thought to be a line infection, something we have battled with Hope many times.
In the afternoon they made the decision to send Hope to Edmonton. Her heart was weak and this infection would make it more difficult for her to fight. They felt she would be safer in Edmonton. Shawn and I talked on the phone and he felt that it would be best for me to go up with Hope and he would follow me on Friday with Sadie. We've done this so many times and assumed that this trip would be long and it was best for him to stay behind to work as much as possible.
The doctors decided that with Hope being lethargic, it was safer to transport her intubated. I was not prepared to watch them do this alone and called Shawn to come right away. He arrived shortly after the tube was in and was able to sit with me. We left the hospital at 4:15 pm to get home so I could grab some clothes before leaving for Edmonton. A friend had agreed to drive up with me so I wouldn't be alone.
There was terrible traffic leaving the hospital and it took 45 minutes to get home. I started to get very impatient and almost crashed our car at one point in my rush. Shawn asked me to calm down and I disrespectfully refused. I felt a strong sense that I needed to hurry but could not explain it. Once I was home I had everything packed and ready to go within 30 minutes and was on the road.
Upon entering Edmonton outskirts, the doctor in Edmonton called to ask where I was. I told him and he told me that I needed to speed up and get to the hospital immediately. He told me that Hope had turned a bad corner and was fading quickly, they weren't sure if I was going to make it there in time. I called Shawn in hysterics to hurry to the hospital. I was so hysterical he asked to speak with Katie as he could not understand what I was saying. I raced to the hospital and left Katie and our car at the front door as I ran through the hospital. As soon as the elevator doors opened to take me up, the doctor called again to tell me to hurry. I ran down the third floor hallway to PICU and found the doctor waiting at the door for me. He told me they'd been doing chest compressions on Hope for 13 minutes and had lost her, but her pulse had come back very weakly.
I stood next to my little girl all alone, with a room full of doctors, as they told me there was nothing more they could do. I screamed 'No' over and over as I stroked her face and lay my hand on her tummy that continued to go up and down with every breath. I called Shawn again and told him we were losing her and that he wouldn't make it. He asked me to kiss her. The surgeon came to see me and told me that he would take her to try ECMO (life support), but it would take 2 hours to even attempt to connect her because of the clot in her neck and he was positive she didn't have two hours. They began giving her shots of adrenaline every 30 seconds to keep her alive. Finally they told me that she had come back long enough to see me, but was now only alive because of the adrenaline. They stopped giving it to her and told me that slowly her heart would stop beating.
They agreed to let me hold her and moved a couch into her room and took out the bed. I asked them to bring in my friends; Graeme, Carissa and Katie from the waiting room. I sat with them and cried and held my girl as her heart rate slowly dropped for the next hour. At 9:30 they came in and removed the breathing tube because her heart was nearly still. At 9:45 the doctor came in with the stethoscope and told me she was gone completely. I held her just the same and knew that I would not give her up before her Daddy got to hold her one last time.
Shawn and James arrived at 10:30, shortly after my mom arrived from the airport as well. They were all able to hold her and say goodbye one last time. The staff came and took plaster casts of her hands and feet for us. We made foot and hand prints and were able to bathe her ourselves and wrap her in a new blanket. We held her in that cold room until midnight when a security guard came and walked Shawn and I down to the morgue with our nurse. At the door of the morgue, Shawn handed our baby girl's body over for the last time. We knew that she was already with Jesus and although her body would spend the night without anyone there, her soul was with so many in Heaven.
It was late, but I couldn't bear the thought of waking up in Edmonton to this sick reality. We made the drive home and crawled into bed around 3:30 am this morning. I thought I would sleep forever and avoid this nightmare that is now our lives. I woke up less than 3 hours later and soon felt the bed shaking from Shawn's tears as he thought about telling Sadie today that her sister is gone forever. How do we explain something so difficult to a child so innocent and loving?
We are shattered and broken. Her life was full of purpose and God used her to reach so many. Her fight simply seems so unfair when she would never get a chance to run, talk or laugh with her sister here on this earth. This journey is now beginning again for us, a journey of grief. Today I will have to call a funeral home and plan a funeral for our child, a task no parent should ever have to do. Today the reality will set in more deeply as the shock fades.
We believe that God is good, even when he doesn't give us what we wanted. We believe that He is loving, even when He takes those that we love. We know that we will spend eternity with Hope and that she no longer has scars, clots or damaged organs. We know that she will never be poked again and that she is running free. Yesterday we got our freedom back as well, freedom from this suffocating journey and all we want is to be trapped and have that freedom removed again. Please pray for our family.