I was lying on pads, on the floor of a fairly dark hospital room, trying to adjust the cords attached to my baby's chest. Pulling them as far as they could reach, I wanted to cuddle with her. She needed to nurse, I needed to sleep. Neither of us were going to get our way tonight. We were waiting for an MRI in the morning and Averie wasn't allowed to eat. A three week old baby was not able to eat, for 12 hours. Those cries were horrible, but somewhat welcomed. Only because I was grateful she could cry; would cry. Only a week earlier she was transferred from a minimal stimulation room in the Neonatal Intensive Care Unit at SickKid's Hospital. She was in a Phenobarbital induced coma, her levels of the anti-seizure medication reaching three times what was considered "therapeutic". I was grateful she could now open her eyes, move and cry.
This was my reality for six weeks. Things I never thought of when having a baby. Things I didn't know happened. I was sheltered from tragedy. I am no longer.
This blog is somewhat therapeutic for me, but I was inspired by the lack of support for parents struggling with this diagnosis. I am here to simply share my experiences, feelings and offer some support for other parents who have gone or are going through what we did. I say that as if it is over, it's not. We will be going through this lifelong, so will our daughter. I always welcome support from others who have similar experiences and I hope this forum can allow for open and supportive discussion on paediatric strokes and the journey thereafter of the babies, parents, families and health care team.
