Friday, June 20, 2008

Loving and Letting Go

Regret and guilt are the worst stage of the grieving process I think. I have been having a really tough time dealing with my feelings of guilt and regret. I was okay blaming Cole's death on my doctor because he did not give us a choice as to if we wanted to try and take aggressive actions to save him when he was born. The doctor had always given me hope that Cole could be okay and that he might have enough water to develop his lungs but when push came to shove and Cole was born, the doctor just shook his head no when I asked can’t you do anything to save him. The doctor said that he had no chance because his lungs would not have developed after his water broke at 21 weeks. So instead we just held him until he died, which was 2 hours later. But with my daughter Breanna, I have no one to blame but myself. I made the decision not to take aggressive actions if she were born soon after my son Cole. When I arrived at Mount Sinai we were given a bunch of statistics on her odds of living if she was born at 23 weeks and if she did live how horrible her quality of life would be. She would likely be blind, be developmentally and physically challenged, and require life-long custodial care. We did not want that kind of life for her so we decided that if she were born that week we would chose palliative care but if I had managed not to go into labour that week and she stayed inside of me then we would revisit our decision based on her new odds. At the time the decision was made it looked like she wasn’t going to come then. I was down to 4 centimetres and hadn’t felt any contractions. But now, knowing the outcome, I wish that I had made a different decision. I don't know how they could have possibly let me make such a major decision seeing as I had just lost Cole... I was not in my right mind. I'm feeling so guilty now and I feel like I didn't even give her a chance. She only survived for 30 minutes but maybe with the machines she would have been fine. Dug insists that we made the best choice FOR HER because being born at 23 weeks meant she would likely not survive and would have spent her last moments suffering with tubes and if she did survive she would have a terrible quality of life. But I can't help but feel that I threw away the slight possibility of having her here with me now. I never even gave her the chance to fight. She never did anything wrong, her water didn't break; she was perfectly healthy and happy during my pregnancy. Maybe if we put her in NICU she would still be with us. All the people I have met so far on message boards and groups have either had still-borns or chose to take aggressive actions to save their babies. I'm so scared that I'm the only one and that I made the wrong decision.

A fellow grieving mommy, Jane, lent me a book entitled “Loving and Letting Go: for parents who decide to turn away from aggressive medical intervention for their critically ill newborn" by Deborah Davis. I have been reading it but very slowly. At first because I wasn’t ready to let myself off the hook or didn't feel ready or open to allowing myself to not feel regret about the decisions we made. And now it feels like it hits too close to home. Some of the epiphanies I have arrived at through my reading are that doctors don’t like to lose babies either and I think that is what started my regret spiral. We had an appointment at Credit Valley to see my OB that delivered Cole. After Cole was born the doctor had me transferred to Mount Sinai hospital between deliveries because he thought Breanna would have a better chance at a better NICU. But seeing the disappointment in his eyes when he found out transferring me didn't do any good was awful. That's when I thought to myself... shit we didn't even try and all the “What ifs” started.

The book has also helped me realize that I will always be full of “what ifs….” I could what if all the way back to Cole and Breanna’s conception. What if I hadn’t pushed so much for multiple follicles during our last fertility cycle? What if I had taken off work fully and been on bedrest from the beginning? What if I hadn’t eaten that chocolate bar? What if I had gone home like the doctor suggested and I didn’t get an infection? What if I had realized that I was having contractions? What if we had chosen to try and save Breanna or been more forceful and tried to save Cole? What if ….. And I will always be filled with “I wish…..” I wish I had spent more time with each of them, I wish they were born at the same hospital so that I could have spent time with them together, I wish I had not been so scared about what people thought and taken a MILLION pictures, and above all I wish I still had Cole and Breanna.

The book says… “You can CHOOSE which assumptions to make: Ones that let you live in peace, or ones that torture you. Whatever assumptions you make doesn’t change the outcome or affect your baby. It affects only you and your quality of life. Give yourself permission to accept your decisions as best for your baby.” (pg33)

Reading that and knowing that guilt is a normal stage of the grieving process have helped me to get through this regret spiral. Thankfully I have found a lot of support through message boards from people that have had similar experiences. Talking to them and knowing that they have made similar decisions has been comforting. Dug and I also had a huge heart to heart talk one night about the choices we made and why we made them. He reminded me of all the things that happened and what we were told that I seem to have blocked out of my memory. I know deep down we did what was best for Breanna but I still can't help but wonder “what if” and think about the “I wish”.

Dug summed it up best when he said to me as he broke down in tears that Breanna just wanted to be with her brother. We had each other and she did not want Cole to be alone, so she only stayed with us for a short while to comfort US and then left to be with Cole. My baby girl was so selfless. She truly was beautiful on the inside and out.

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