Hello Cindi, I read your story and am so sorry for the losses you have suffered. Missing out on your baby's first month of life, your life being in jeopardy, then being unable to care for yourself or your baby as you deeply wanted when you returned home. I hear your pain and frustration of others just telling you to be grateful, etc.
Although our circumstances are different, I think I can relate to a lot of the feelings you are experiencing.
I will briefly share the highlights of my story then share with you things I have done to try to cope and move forward with loss, grief, and trauma.
My first horrific loss was the stillbirth (death) of my baby at 35 weeks pregnancy. It had been a healthy pregnancy and a week before his checkup was fine. It was a total shock to find his heart had stopped beating and instead of welcoming a new member to our family, I would be arranging his burial. No cause was ever found for his death. Those were the darkest days of my life. I soon became pregnant again, another boy. Owen was induced at 39 weeks gestation. He was healthy. I was healthy. One week after his birth, I was feeling fine and nursing him. I stood up and blood gushed to the floor. I was hemorrhaging. At first the doctor called in a prescription for Methergine, but by the time my husband came back home with the med I was bleeding so badly it was time to go the ER. Because we live in a rural community, there was no ICU. It was all a blur. After a D&C and hopes to stop the bleeding, I had to go back to surgery as every measure was failing. I begged them not to take my uterus as I desperately wanted another baby. I was in surgery for hours at which point my blood starting becoming watery and I was on the verge of DIC…a life threatening situation. I woke up from surgery with a huge bandage on my abdomen and instantly knew they had cut out my uterus to save my life. It was the second darkest moment of my life. I went home with a huge incision on my abdomen and severe pain for weeks. Not only was I mourning the loss of my womb and impossibility of future children, but I was unable to care for my newborn as I wanted to. Everything hurt terribly. Six months later, my son Owen who had been healthy, suffered what they are still calling "unknown cause multi-organ failure." His body went into septic shock although there was no signs of bacterial or viral infection. Everything came back negative. He was admitted to the PICU and spent five weeks there, fighting for his life. We came extremely close to losing him. In the PICU you hear codes going off all the time and four of our friends who we met there lost their babies/children. The trauma of that time was indescribable. Though Owen survived, he still suffers from medical challenges related to his sudden illness.
I think the things that help me most are when people listen. I have had many well meaning people say "Well at least you have two kids" or "I'm so thankful Owen is alive!" Of course, I am grateful for these things. But it does not take away from the heartache of all the loss…the death of my first son, the loss of ability to carry a baby, the lost time with my son Owen, the inability to see him develop normally from 6-8 months, the loss of being able to breastfeed him, the permanent changes that have come upon him and our family. I am forever changed. Our family has had its eyes opened to tragedy (not just ours but the families at Children's that we have come to know) and deep loss. It changes your world view. People want you to go back to being your "old self" and for me it is not possible.
As far as support and how I have moved forward, for me is has been a long journey. With the death of my son, I actually went back to the room where he was delivered and relived those dreadful moments. I journaled, cried, and wrote his stats on the baby board. I then delivered Owen in the same room, refusing to let the fear overwhelm me. There is a lot of support for stillbirth, so meeting with other moms helped a lot.
As far as the emergency hysterectomy, I have not had much support for that. It all happened so fast and people just said "We are so thankful you are alive!" They don't realize I struggle every day with grief and the sudden trauma of going into surgery and waking up changed forever against my will. My husband is the only person who has really let me grieve that loss. I just wish family and friends would let me express the disappointment and trauma of that. My lost time with my newborn, my changed body…I am realizing that people do not often enter into your experience in a empathetic way if they do not understand the loss. They just try to shine positive vibes on it and make me be grateful and it drives me crazy.
As far as Owen's PICU stay, not many people can relate to that either. The social worker in the PICU was wonderful during my stay there. I recently reached out to her to see if I can talk with her again. The support during his stay was incredible, but afterwards there is nothing in place to help process all the trauma of living in that environment for weeks and watching your baby face surgery after surgery and not know if he will survive. I don't think it would be good for everybody, but something I do is actually go BACK to the PICU waiting room and relive those terror fillled moments. I let myself go back to that time and experience and cry and get it all out. Journal. Talk through it with someone who will listen. I feel the more I talk about it and work through it, the less power the fear has over me. I think it is important to recognize what you have lost…don't just ignore it. Maybe even tell people the way they can support you best is to listen and let you be sad or disappointed. I think that is the first step to moving forward. It is not always bad to be negative or sad. I think letting yourself experience the horrible emotions frees up room to let yourself experience joy and peace.
I think society in general needs to do a better job of letting people express sadness and disappointment. Positivity isn't always the answer to everything. I hope you can find some friends/family who will let you work through the trauma you have experienced and show support for where you are at now in your journey. Best wishes~