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.

Card Shopping for Father's Day

I knew buying father’s day cards would be difficult but I never imagined that it would be THIS difficult. Anyhow, I decided to tackle it yesterday and it was NOT fun!

I have only seen my dad cry 4 times that I can remember. The first was a few years ago at some random moment when our entire immediate family was in Phoenix for Passover. My older brother, his wife, their two children, my younger brother, his girlfriend (now wife), my dad and I (unfortunately my boyfriend, now husband, could not come) all sat around the table having dinner outside on the patio of the house my older brother rented for the week. My dad was telling stories and during one story about a friend back in Morocco he started to tear up. I still to this day have no idea why but I remember Aimee and I talking about it shortly after and commenting that my father had gotten a lot more emotional as he got older. I could imagine that the fact that he was having a nice family dinner with his three grown up children that lived in different cities and even different countries and were starting their own families might have been a bit touching to him.

The second was on Friday, January 11th. It was the day after his birthday and I went to his house for our usual Friday night dinner together but this time Dug was able to come because he was off work. We had the best birthday present ever to give him!!! We came into his apartment and did the hello hugs, and kisses and then I handed him his birthday gift and card. He opened the card and looked curiously at what was tucked inside. “What is this?” he asked as he turned it around and tried to figure out what it was. “It’s an ultrasound picture” I said. He still didn’t get it. “I’m pregnant!” I said “We’re having twins!” as I pointed to the two little blurry circles on the piece of paper. “Wow, that is so wonderful!” he said and then he started to cry. I couldn’t believe it. He was even happier than Dug’s mom was when we told her, although that was over the phone so we can’t really tell.

The third time I remember so vividly and I wish I didn’t because every time I think of it, it makes me cry and feel so awful that I had caused his pain. It was on Sunday May 4th, soon after Breanna was born and we let the grand parents in the delivery room. The nurse had Breanna and was putting her in a little dress off to the side. Dug’s parents were crying and went to be near her (although none of them picked her up or even touched her as far as I could see) but my dad stayed by the door and would not or could not get any closer to her. He looked at me with tears streaming down his face and said “can’t they do anything for her?” And I realize now just I am typing this that I responded much like Dr. Smith did when I saw Cole for the first time and asked him the exact same question. I shook my head No with a sympathetic I’m so sorry face.

The fourth time was at Cole and Breanna’s funeral. My father had written a beautiful message but felt that he could not read it so he gave it to my older brother to read. As my brother said the words that my father so eloquently wrote, so much so that I thought it was from a book, my father and I grasped hands so tight and with tears in his eyes he apologized for not being able to read his words himself.
I’m sure there have been many more tears after that and I feel awful being the one that brings them on. I remember reading in the grief pamphlets that grandparents suffer the most when there is a baby loss. Not only have they lost a grandchild and all the things they wanted to do with that child but they also feel like they have failed in protecting their own child from feeling so much pain. So what to do for father’s day this year? I sifted through the cards along the wall and for almost every card I read, I cried. People must have thought I was crazy. Kids were picking out cards for Dad and grandpa, wives for their father’s and husbands and I was standing there crying my eyes out. Every time I read a message it made me think about “what could have been”. I struggled with the choice of whether to get him a grandfather’s card from Cole and Breanna. I know that I don’t want to pretend that they didn’t exist but I’m not sure my father could handle something like that. And I thought about the tears I would bring on and how I had already caused so many. I eventually found a card that talked about how glad I am to be his daughter and on the front of the card was two little sets of baby foot prints. I thought well maybe this would be okay. It was clearly a “From you Daughter only” card but I felt it also symbolized Cole and Breanna without having to say anything about it. I still worry if it is still too in your face and I’ll have to see when I give it to him. I may just leave it for him as I leave rather than stand there and have him open it and read it in front of me over dinner.

As for my husband…. What to do? Finding a card for him was also difficult. Do I get him a card from Cole and Breanna or one from all of us together? No matter what I knew I had to recognize them… we are both on the same page in that regard….thank god! But how emotional should I get? There was the “father to be” with all this hope, the “first time father” filled with joy, the “from your daughter” or “from your son” talking about all the memories they have shared. Where was the card for the “father that lost a child” I wondered? With each card I read, tears streamed down my face in sadness of all the things that I wish we could have had, and what could have been.

I found some from you wife and realized that may work best. I ended up buying two and haven’t decided which one to give him. One is more of a “we are supporting each other” and the other is talking about “how proud that he is my husband and the father of my children.” The latter might be too difficult for him to receive but I love it and part of me thinks deep down he will appreciate it.

After I decided on getting both and making the final decision later, I turned my attention to what should I get from Cole and Breanna. I thought since mine was so emotional I’d get him something more happy and fun from the kids. I really wanted to get him something with Winnie the Pooh since the characters remind us of Cole and Breanna, but there wasn’t any, and I went to 3 different stores to look for cards. I finally stumbled upon a card that I liked. It had a doggy in a plane writing “Daddy” in the clouds. I thought wow, it’s like Cole and Breanna sending a message from the sky. I figured I’d add some Winnie the Pooh stickers to the card too to make it more “them”.

As I am writing this I realize that I did pretty well. Granted the process of looking for the right cards was extremely emotional but I think I got some great cards that I am now more comfortable with now that I have written about them and explained why I chose them. Maybe there really is something therapeutic about writing a blog. Hmmm.

Reality Check

I feel like I’ve taken many steps forward in my first month of the grieving process and yesterday I feel like I was thrown one huge step back. I had been finding it very comforting to go to groups and talk about my feelings. I had attended one meeting by the PBSO with other couples that had recently lost a baby and I went to a meeting at the BFO that was not starting a group for lost babies until September but had an informal meeting with three other mommies. I also found the grief and loss board at WTE and Share message board full of people with similar losses. Everyone was so kind, comforting and understanding of my loss. They knew what I was thinking and feeling. They were thinking and feeling the same things. They made Cole and Breanna real and made their loss feel significant.

After so much success in these other forms of sharing I decided to go to a Share and Support night at the BFO. I knew that there would be people with all different losses but I also knew three other ladies that would be there that had lost there babies. One that I had met at a PBSO meeting and lost her baby a day after birth due to an intestine rupture, one that had lost her baby at full term and was born still due to a cord incident and one that had lost two babies due to premature birth many years ago and she now worked at the BFO and was facilitating the mommy group.

As I sat in the room and looked around before the meeting officially started I suddenly felt like I don’t deserve to be here. I lost my babies at 23 weeks. I was only just over half way. My loss was so insignificant. I actually considered getting up and leaving but thought that would make more of a scene and draw more attention to me and my insignificant loss. I suddenly realized that by surrounding myself with all these people on message boards and groups that had lost babies I had deluded myself into thinking that my loss was somehow significant but now that I was in the really world the reality was that it wasn’t. It occurred to me that all my friends and everyone I know in the “real world” not my comforting “baby loss world” must be thinking “what the f**k? get over it.”

As the group started and the facilitator talked about memories I again realized I have no memories I only have the memory of what would have been, what I had hoped for. I was grieving the loss of a dream not actual people. Then came the time to go around the room and share our loss. I hated that I was sitting right next to the facilitator. I was going to have to be first. I tired to think about how I could make my loss not sound so insignificant. I imagined what people would think if I had said I was only 23 weeks along and what they would have imagined would come out at 23 weeks. I know that before I saw Cole and Breanna I had some crazy thoughts about what they would look like so early in the pregnancy. I know I thought they wouldn’t look human and if they didn’t look human then why would I be grieving for them. All I said was “I lost my twins, Cole and Breanna, after going into labour preterm”. Simple, to the point but without giving away that I was ONLY 23 weeks which I imagined people thinking would be like losing a baby at 8 weeks which I had lost before and although I was sad, probably mostly because it was the first time I actually got pregnant after a year of fertility treatments but I certainly wasn’t in need of a support group. I cried, moved on and started trying again. I never even considered grieving the loss. (My apologies to anyone reading this that has suffered an early loss but that’s how I felt).

As we continued sharing around the room I didn’t feel any better. People had lost their parents, spouses and children at all ages 2 through 22. Even the other lady that was grieving her preterm losses said her story better than I. She said she was remembering her two babies that she had given birth to prematurely and they died shortly after being born. So much better said… explaining that they were alive, they were actual beings that she was grieving. The conversation continued and people were invited to share about ways of remembering and experiences dealing with mother’s day and upcoming father’s day. I wanted to talk, share my mother’s day story but just couldn’t. I felt so wrong being there. I felt like they wouldn’t agree that I was a mother and I just couldn’t stand to feel that after I had just dealt with that issue and felt that I resolved it. It was like I had taken two steps forward and then reality taking me one step back.

After the meeting, people got up and started talking to each other. The facilitator who was sitting right next to me initiated a conversation with me. He asked about my loss and I shared with him my concerns and fears that I did not deserve to be here. To my surprise he actually perpetuated the thoughts I had. He said “wow that is an early loss.” I explained to him that I was worried that people must be thinking that what came out at 23 weeks was not even human and to that he actually said “what did come out?” I imagined that he must have thought they were just two grotesque blobs of human tissue and so tried to explain that Cole and Breanna looked so normal and perfect just small. I had to validate them by explaining that they were alive, and moved their little fingers around. I got the feeling that he didn’t really believe me so I said I had pictures of my babies and I took out my wallet size photos of Cole and Breanna to show him that they were real, they were human. To my surprise his response to looking at the pictures wasn’t you’re right, they do look so normal. Instead he was shocked and he said word for word “wow they were SO SMALL. I’m assuming that is your hand in this picture and your hand is not very big”. I couldn’t believe it. If a pastor was thinking these things what must all of my friends think? No wonder they have all just disappeared and not known what to say. They must think this is such an insignificant loss. Well if it’s so insignificant why does it hurt so much?

Well this was my reality check. I need to join the real world. I haven’t figured out if that means agreeing with the real world and getting over it OR sharing with the real world what my babies looked like and showing them that they were human. I’m a little afraid of what they would think of that. My babies are beautiful to me but I’m their mommy, mommies always think their ugly kids are beautiful. My babies are also beautiful to others that have had a premature loss because they know what it’s like. But to those in the real world, my babies must look creepy or scary or I don’t know because I don’t see it but I certainly saw it in the eyes of the pastor and it wasn’t pretty. :(