Anniversary of my hospital stay/ Pregnant in the ICU

Posted by cinditree @cinditree, Wed, Jan 22 1:53pm

Hello, I am new here. I just searched for this because I am having a hard time right now. It is the first anniversary of my illness. I was 8 months pregnant with severe pneumonia in both lungs. They intubated me and performed a c-section on my birthday last year. I was in coma for 2 weeks and experienced delirium upon waking up, I was also trying to understand where my baby was and they would not let him come see me in the ICU. They dried up my milk supply and I would just cry for my baby. I didn't meet him until he was a month old. Then I still had to do rehab due to myopathy and neuropathy on my whole right side. When I came home I could not care for him alone. The whole thing was extremely traumatic I had horrific nightmares and the memories haunt me. Sounds trigger me to feeling back in the hospital. I have been getting better over the last year but, right now it is all coming back. I feel like it is just too much knowing that it's not just the anniversary of one event, but 6 weeks of my life. I missed out on everything. Now everyday I am remembering what was happening to me on this day last year and what I feel like was taken from me. Friends and family just seem like they want me to be grateful, and I am but they don't want to hear the reality of what it was like for me. It is such lonely experience. Can anyone relate?

Hi Cindi, welcome. I'm so glad that you found Mayo Clinic Connect. This is certainly a place where you can talk openly about your feelings and experiences, and your reality. I'm tagging @jslate @amandacgrow and @kristap31 on this discussion. They, too, know what it is like to remember the traumatic events of ICU and how anniversaries are rough.

I simply can't imagine what you went through then and how this past year has been, caring for a newborn, and mourning what didn't go as planned and you had imagined things would be. You probably want to be grateful for your son, your life, etc. as your family and friends suggest you should, but that is not the emotion that you are feeling right now. Might it be helpful to tell us more about how you're feeling today?

Liked by Annie Johnson

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@colleenyoung

Hi Cindi, welcome. I'm so glad that you found Mayo Clinic Connect. This is certainly a place where you can talk openly about your feelings and experiences, and your reality. I'm tagging @jslate @amandacgrow and @kristap31 on this discussion. They, too, know what it is like to remember the traumatic events of ICU and how anniversaries are rough.

I simply can't imagine what you went through then and how this past year has been, caring for a newborn, and mourning what didn't go as planned and you had imagined things would be. You probably want to be grateful for your son, your life, etc. as your family and friends suggest you should, but that is not the emotion that you are feeling right now. Might it be helpful to tell us more about how you're feeling today?

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I would say that I feel haunted by the whole experience, which makes me feel lonely because no one else saw the things I did. I hallucinated entire relationships with the nurses and staff, none of it was real. Instead of feeling like a dream that fades away, they feel like memories with no one to share them because it was all in my head. I have anxiety and have had a few breakdowns this month where I will just end up crying and yelling while memories pass through my mind. It is very stressful. I am planning my Son's first birthday, which is also my 39th birthday and the anniversary of my intubation. I want to celebrate and have fun with him, but another part of me wants to avoid the whole day so preparing for the party has been difficult. I have some people helping me though and I think everything will be fall into place and we will have a good day. The anticipation is probably worse than anything. I have a hard time connecting with people because I feel they don't understand or want to hear my truth. people try to gloss over it and I just retreat. I am thankful to be able to get these feelings out.

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@cinditree

I would say that I feel haunted by the whole experience, which makes me feel lonely because no one else saw the things I did. I hallucinated entire relationships with the nurses and staff, none of it was real. Instead of feeling like a dream that fades away, they feel like memories with no one to share them because it was all in my head. I have anxiety and have had a few breakdowns this month where I will just end up crying and yelling while memories pass through my mind. It is very stressful. I am planning my Son's first birthday, which is also my 39th birthday and the anniversary of my intubation. I want to celebrate and have fun with him, but another part of me wants to avoid the whole day so preparing for the party has been difficult. I have some people helping me though and I think everything will be fall into place and we will have a good day. The anticipation is probably worse than anything. I have a hard time connecting with people because I feel they don't understand or want to hear my truth. people try to gloss over it and I just retreat. I am thankful to be able to get these feelings out.

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@cinditree I am so happy you found this space where you can share your story. You are definitely not alone! What you experienced was very traumatic and what you are dealing with in the aftermath of it all is very normal. Many people who have been so sick experience hallucinations. Sometimes these hallucinations are very difficult to move past. I am going to tag @kariulrich and @jslate as well to this post as they have both shared similar experiences with us. You may want to check out their thread here: https://connect.mayoclinic.org/discussion/nightmares-hallucinations/

Liked by Annie Johnson

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@cinditree I have been thinking about you since I was tagged by @colleenyoung yesterday and read your post. My heart just aches for you. The pain you are experiencing is so very real, and it is so difficult to explain it to others who have not been there. I understand what it is like to have to face friends and family who just can't comprehend the trauma and how long it stays with you. When others suggest that you should feel "grateful" or "happy" it complicates the pain in profound ways (even though they almost always mean well). I am so sorry for what you are going through.

I share my story with hope that perhaps you might feel less alone in your own path through trauma and healing. In February of 2018, I entered the hospital to have my baby. During labor, the baby's heart rate dropped and the doctors recommended a C section. The C section seemed to go smoothly and our baby boy entered the world. My husband went to the nursery to help give the baby his first bath and I was taken to a recovery room. Just a few minutes after arriving in recovery, my blood pressure began to plummet, sending off every hospital alarm. I slipped out of consciousness and the team rushed me to the Shock Trauma ICU. A team of 25 doctors and nurses had to work frantically to save my life; I have been told by many of the people who were there in Shock Trauma that night that I would have died within minutes without this major medical intervention and access to a massive amount of blood for the blood transfusions I needed. I was taken back into surgery where they did an emergency hysterectomy and tried to for several hours to stop the bleeding and save my life from what they later determined to be an Amniotic Fluid Embolism (a rare complication of childbirth that happens 1 in every 100,000 births and has a mortality rate as high as 80%). I narrowly survived and was intubated and in a coma for a week. The coma felt like a nightmare that I could not wake up from. After I "woke up", I began experiencing profound delirium. I very much relate to what you said about hallucinating relationships with the nurses and staff…the people that took care of me were very much wrapped up in my world of halucinations. After about 3 days, I started to realize that my reality was not lining up with everyone else's reality and I was terrified that I had lost my mind. I was so embarrassed (for all of the things I said!) and just completely fell apart one dark night in the hospital.

There is much more I can say about delirium, which I can share with you sometime if you are interested. I will tell you that you do not need to feel shame about anything that you imagined, said, or experienced. I found some peace by writing down (in first person) what it felt like to live in delirium…I described my halucinations in writing and somehow they seemed to have less power over me after I saw them on paper and shared them with a few people that I trusted.

I wanted to share some things that I learned near the time of my anniversary last year. Before this trauma happened to me, I mistakenly thought that survivor anniversaries would be a celebration of life. All year, I thought that I would do something really special to celebrate my baby's birthday and my one year survivorversary. However, as my one year mark got closer, I found that I was actually a mental and emotional wreck, and the LAST thing I wanted to do was have a party on the day that everything fell apart. I am in total disbelief that your trauma happened on YOUR birthday and that you now share that birthday with your baby. This is a complicated situation, and I am so sorry.

I don't know what the right solution will be for you, but I wanted to share briefly a few things that brought me peace as I faced my own anniversary.

I considered not having a birthday party at all for the baby (he wouldn't remember it, after all), but ultimately, I realized that the party meant a lot to my family (I have other children who were 9,7, and 5 at the time). I asked my 9 year old daughter to plan the party, and it brought me joy to see how much fun she had planning for her baby brother. I share this cautiously because every situation is different; perhaps you will find more peace by holding off on celebration until you feel better. There is nothing wrong with this at all! You must trust your own instincts about what will be right.

After the party was over, I decided to really focus on self care during the following week, as I remembered the days I was in a coma. I spent a lot of time writing and listening to music that brought me peace. I watched movies. I took bubble baths. I just let things go and tried to give myself a lot of grace.

Cindi, you are not alone. You are going through a very tough time and my heart is with you as you navigate the path ahead. The people on this support group were there for me when I was very deeply depressed last year. While I still have many tough days, I feel hope again now. I know that you will find hope in your own way and in your own time.

Take care of yourself and accept the help of others that is offered. Please let me know how you are doing over the next few days, and how you feel on the day of your anniversary and birthdays.

With sincerity,

Amanda Grow
Kaysville, Utah

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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~

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