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Fri, Jan 24 3:47pm · Anniversary of my hospital stay/ Pregnant in the ICU in Intensive Care (ICU)

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~

Nov 21, 2019 · Baby developmental delays – When to be concerned? in About Kids & Teens

@seacliff , I also wanted to add that you are your child's best advocate. I am not saying this because I think there is a health concern that your child is not walking yet, only that I have learned this lesson the hard way to be on the cautious side. I had concerns about my son's symptoms before he became quite ill, and his primary physician did not think anything of it because USUALLY those symptoms are not worrisome. If you truly think something is going on and no one is taking you seriously, keep looking for someone who will. My son was in the PICU by the time his GI appointment rolled around…

Nov 21, 2019 · Baby developmental delays – When to be concerned? in About Kids & Teens

Hello @seacliff, we have been through a lot of medical issues with my almost two year old. Through the entire medical journey (starting at 6 months) as a seemingly healthy baby then becoming very sick, I have learned that it is always good to gain more information from good sources. If you have concerns, I would encourage you to visit a pediatrician who can give professional advice. Sometimes when I compare my son's health issues to other peoples' or look to Google for info, it gets confusing and is not helpful. It never hurts to gain knowledge and experience…then you can have more peace of mind and move forward as you see best.

Nov 13, 2019 · Loss and Grief: How are you doing? in Loss & Grief

Thank you. I have never heard the analogy of the railroad tracks, that is so true. Thank you for sharing that.

Nov 11, 2019 · Loss and Grief: How are you doing? in Loss & Grief

Sarah, I am deeply sorry the loss of your son. I have buried a baby boy, it was almost three years ago that he died unexpectedly. I too used to have a cheerful, upbeat personality and things have changed so much. My friends who haven't experienced deep loss just don't get it, and it annoys me when they try to look on the bright side of my son's death. I don't think we ever need to find something positive about death do we? I am learning that grief and joy can live together. After my son's death, my six month old went into multi-organ failure and nearly died. We spent five weeks in the PICU and go back often to the hospital. I hear the flight for life helicopters and they haunt me. Every time I go back (in my mind) to the PICU and the near loss of my second son and the death of my first. It is hard to process all these things as not many of my friends have been through such trauma and shock. I wish you strength and thank you for sharing about your precious boy. He sounds like such a smart, charming little guy.

Sep 16, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

I read your post last night after returning from a trip to Children's Hospital. Your story has been on my mind and I appreciate you sharing it, as hard as it is to hear. It is hard to know that people suffer so much and face constant, unavoidable reminders of things that can't change. At the same time, it gives me strength to know I am not the only one who faces such pain. I have shared my story briefly before, so won't repeat it. But some of the things you mentioned shed light on some of my struggles as well. I was not actually in the ICU because our rural town doesn't have one. I was in the "closest section to the ER charge station" which counts as ICU. I went from being healthy to nearly losing my life in a matter of seconds when I experienced a postpartum hemorrhage. To save my life, they put me to sleep, tried to stop the bleeding, but could not. I woke up and was horrified to find my womb and other female organs had been removed. As in, I would never again have the possibility of having a baby. The shock was incredible. I still can't believe that happened. Upon going home a week later, the staff offered no mental health support other than a website which told me I was no longer a "real" woman because of my loss. They were so glad they "saved my life" and I was devastated that I would never be the same. It has affected my sense of identity and purpose, and now I know that other women who have experienced such loss suffer with suicidal thoughts and depression as well. The scar I carry is huge, and a constant reminder of how I was "gutted." That's how it felt. Something I have struggled with following the shock and loss is how people respond. They don't allow me to grieve the loss of my future as I had hoped for it. They don't allow me to grieve the loss of every time seeing a pregnant lady knowing that has been taken from me. They don't allow the sorrow and disappointment to exist. It makes me feel even more alone in my experience. I wish we as people were "allowed" to grieve loss and voice our disappointment with how things turn out.

This is only part of my story, I have also lost a baby to stillbirth from no known cause and my six month old son spent five weeks in the PICU last summer. He was on dialysis, had a colostomy, multiple surgeries, and is currently dealing with severe peroneal nerve damage and left ankle contracture. He will have another surgery next month and his scars and injuries are also a constant reminder to me of everything he went through and his trauma. I struggle too with guilt from seeing his medical challenges and feeling I should have/could have prevented them somehow.

I hope that you can find strength to be kind to yourself in everything you are facing. You said you struggle with a lot of guilt from attempting suicide. I have struggled with suicidal thoughts too and have wondered why I do. For me it is an expression of how deeply my grief and frustration and loss have changed me. It is a crazy feeling to be out of control, and yet we all are. No one is really in control, and that is a hard reality to face. I hope you can find grace, kindness and much patience with yourself. I will be thinking about you and wishing you strength for what you need. And, keep writing! Your words can give strength to other people struggling with PTSD too. You are not alone

Aug 5, 2019 · Loss and Grief: How are you doing? in Loss & Grief

I am grateful for this community and opportunity to discuss and share about grief. It feels so lonely with most of my friends who have never been through deep loss.

Jul 27, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.

It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.

We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.

Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.

I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!