NICU mom PTSD is something that we need to talk about more. I’m sharing my story about how it affects me.
Today marks exactly 1 year since I brought Tristan back to the NICU. No matter how hard I try, I can’t avoid the memories that haunt me almost every day so here I am at 5am writing this post in hopes that some of these feelings will go away and this day will no longer haunt me.
There is nothing worse than the feeling of feeling helpless as a mother. For weeks and weeks I wanted so badly to make Tristan’s problems go away. No baby should every have to struggle with breathing let alone have to fight for their life every single day but it’s a reality many parents have to deal with.
Every single day I watched my son struggle to breathe and some days I watched him stop breathing completely. Every time he stopped breathing my heart stopped a little too. Would that be his last breathe? What were my last words to him? I hope he knows how much I love him and how much I tried I would think to myself every time he would go blue. I couldn’t give up on him. He needed me as much as I needed him so instead of giving up, I talked him through each breath holding spell hoping and praying that each time he would come to.
I remember the day like it was yesterday. Tristan had had a breath holding spell unlike any other the night before. His nurse woke me up in the middle of the night because she just couldn’t seem to calm him. We turned up his oxygen. I rocked him back to sleep, rubbed his head, and wiped the cold sweat off of his body. It took him a while to settle and to catch his breath. It wasn’t normal. Something was wrong. I could just feel it in my body. Eventually he calmed down and things went back to normal. It came time to take Tatiana to school so I went quickly to drop her off and return to be with Tristan so that his night nurse could go home.
Something still didn’t sit right with me. His breathing patterns were off and although he looked okay, he was sleeping more than usual. I just couldn’t help but keep thinking that something was wrong so I followed my instinct and called a friend to drive us to the hospital. In the back of my mind I hoped and prayed that I was overreacting and that it was nothing serious. I wanted so badly for my baby boy to be okay so that I could take him home once again but deep down inside I knew that wasn’t the case.
So my friend came and I packed us up to head to the hospital. His vent was on my back, his oxygen tank on one shoulder, diaper bag on the other, and Tristan in my arms. I walked so slowly down the stairs because I was terrified of tumbling over. This was the first time I had ever managed to carry everything alone but I made it. The 20-minute drive to the hospital seemed to be the longest drive of my life. I had no clue what would happen when we got there but I knew that there was one thing that NICU nurses always told me during our NICU stay – “whatever you do avoid the ER unless it’s an absolute emergency.”
But it was.
There was nothing more that I could do at home. I had tried every single thing that I was taught to do in a situation like this. 9 times out of 10 when you bring a trach baby to the ER because they’re having trouble breathing, they’re going to admit you.
And they did.
For hours we waited around in the emergency room waiting for a patient room to open up. I hadn’t eaten all day and my nerves were a mess. I wanted good news but all I got were unanswered questions. At this point, all I knew was that Tristan’s CO2 levels were astronomically high, in the 120s to be exact. A baby his age is expected to have levels in the 60s.
So what does that mean? It means that for some reason Tristan’s lungs were taking oxygen in but not releasing it all causing it to turn in to CO2. This had happened a few times before when we were in the NICU and with a few adjustments to his vent the problem was fixed. However, those vent changes only seemed to be temporary fixes for Tristan. This time was different. I don’t know why but I knew a quick fix wasn’t going to work this time.
I tell you all of this to tell you that PTSD is real my friends. It’s not something that only affects soldiers. It affects us NICU moms too. There’s not a moment I don’t remember. There are triggers everywhere: pregnant women, newborn babies, moms breastfeeding, pregnancy announcements, loud beeping noises, someone doing CPR on TV, driving past the hospital, giraffes. Things that I never even considered to be triggers will bring back memories that I try to subside.
Although today is just a normal day to everyone else in my life, I’m remembering the events that took place on this day. I’m faced with the realizations of Tristan no longer being here and thinking about how things could have gone differently had I fought a little harder. Today is a day unlike any other for my family that I hope over time will become just like any other day to me too.
What is NICU Mom PTSD?
PTSD is classified as an anxiety disorder. It is characterized by a collection of persistent debilitating physical and emotional reactions to traumatic scary or life threatening experiences.
I would be lying if I said that I was the only NICU mom who suffers from PTSD. Throughout the duration of our NICU stay, we experience things. Things that some can’t even imagine. All of our symptoms are different but they’re all as serious. My PTSD comes in the form of flashbacks of traumatic experiences, my heart pounding after being triggered, chest tightness, forgetfulness, trouble sleeping, and sometimes even feeling emotionally numb.
Learning to live with PTSD is a struggle. It’s a struggle that I never in a million years imagined that I would be going through. Did you know that almost 60% of NICU parents were found to be at risk for PTSD?
No one tells you what becoming a NICU parent will be like and they definitely don’t warn you about being at risk for PTSD. Every single day you’re in the NICU comes with a traumatic event from my experience. Unfortunately, those events hold onto you far after you’re home.
How can you help?
One of the biggest things that NICU moms need is support. Don’t tell us what we should be doing or how we should be taking care of ourselves. You don’t know what it’s like unless you’ve been there. Try to understand by asking what it is that we need. Be gentle with us, have patience. We’re learning our way through this just as you are. We never expected to have a baby in the NICU. We surely didn’t expect to suffer from PTSD but here we are smiling through it day by day.
Honestly, I don’t even know how to begin to make a change or to bring this issue to the forefront but this is my story, or at least a part of it. I’m taking it breath by breath and figuring out how to recover as I go along. Will I ever fully recover? I doubt it but I can be hopeful that as time goes on things will get better and that I can be a living example for Tatiana that no matter what you go through in life you’re stronger than it.
If you know someone who’s struggled with PTSD or is struggling with it, please share this so that others are aware that NICU mom PTSD is a real thing.
Photos by Emma Shourds Photography