When the NICU Never Leaves (NICU PTSD)

Today’s post is going to be a bit off the track from my usual, but these are words I feel in my soul need to be heard. This is a story of NICU PTSD.

When the NICU Never Leaves (NICU PTSD) | Mountain Mamas' Blog | mntmommies.com

It’s 1 am the baby is crying I settle him down and go back to my bed, but the crying doesn’t stop. It just gets louder and louder. My heart is racing, I feel as if I could tear steel apart with my bare hands. I see chimes, and beeps, and tubes.
 
It is all a jumble in my head, sights and sounds running together into a giant cacophony of senses and I can’t make it stop and I can’t catch my breath. It is all a blur and I can’t see my way out. I struggle to sit, to pull myself together, and I am crying and gasping for air, desperately looking for a place of peace and darkness and quiet. The orchestra in the silence is unbearable.

My house slumbers on as I fall apart.

This is PTSD, this is how I feel many nights. I lay awake the slightest noise setting off the alarms only I can hear. I’ve struggled for so long to put a name to the overwhelming fear the envelops me when the moon is high, set off by the sounds from my children. I am back there, in that place of antiseptic, and needles, and doctors, and death, and life, and hope.
 
I fought those four letters with a vengeance. I couldn’t have it. My kids weren’t that bad off, they were only there for a few weeks. They were never in any real ‘danger’. I denied myself those emotions and feelings. Everyone around me was telling me to be happy they were perfectly healthy, I didn’t have any right to be sad or worried, other people had children in much worse condition than mine. I listened to those words and believed them with every fiber of my being. 
 
I tamped down my feelings until they were a smoldering coal in my soul. I became agitated, snappy, and ill tempered. The smoke from that coal slowly filling me. I told myself that’s okay, I’m a new mom with twins I have every right to be irritable. Then one night the coal burst into fiery explosion of noise that would not end. ‘It’s okay though, I’m just over tired’. But it happened again and again my nights spent awake seeking solace from the noise. Months went by, my terrors seeping insidiously into my waking hours. 
 

My demons walked boldly in the light of day.

 
Forcing me to confront them, to admit they exist. Every day, every moment is a battle for control of my brain, my body, my heart. It has been 3 years and a lone cry in the middle of the night can still ignite the fire and strike up the orchestra. 
 
This is what I go through, this is the reality of my life and the lives of many other parents with children who have been in the NICU. 
 
Our children may be deemed healthy, they may come home. but our hearts and minds are stuck among those machines and wires. We are home but the NICU never left us.
 
Leaving my house is hard, I don’t know when the sparks will catch. There are days I lock myself away and don my armor of monotonous prayer trying, in vain, to drown out the sounds.
 
There are good days too now. Days when I can care for my twins without feeling like crying myself. There are smiles and joy, moments when I am carefree and happy. Slowly these good days are overtaking the bad, and I have hope that they will soon outnumber them.

Here are some words I want to say to all NICU and PICU parents. Words I wish someone had said to me.

  1. You have a right to FEEL however you want. Sure, there is probably a child somewhere that is worse off than yours but that does not mean your worry is any less. Recognize and honor each emotion. Sadness, anger, fear, worry, hope, and LOVE! Start a journal to write down what you are feeling.
  2. Take time for yourself. I know how hard this one is, every second is spent thinking about your precious little one. But take at least 5 minutes for yourself every day, do yoga, a quick meditation, read a book, play a game. Whatever it is make sure it is something that brings you joy.
  3. Ask for HELP. If you feel yourself fighting for control of your thoughts emotions reach out and just ask for help. Ask you significant other, ask your doctor, talk to your NICU nurses, hire a postpartum doula, join a support group. Let people know what you are going through and build a strong web of support around yourself.
  4. And lastly I BELIEVE YOU. When I initially told a few people (the wrong people) how I felt I was laughed at told to just get over it, my kids were fine, you can’t get PTSD from something like that. I want you to know that I really do believe you, what you are feeling is real, and there is help.

NICU/PICU Resources

Hand to Hold

Graham’s Foundation

Facebook Groups: There are many groups on Facebook dedicated to NICU parents. Just search for them.

Your doctor: If you feel that you may be exhibiting symptoms of PTSD or anxiety I encourage to go to your doctor or a psychologist, or a therapist and ask for help.

When the NICU Never Leaves (NICU PTSD) | Mountain Mamas' Blog | mntmommies.com

 

2 comments

  1. Brandy says:

    I have twin boys who are 10 now. I suffered PTSD for about 5 years after their NICU stay. They were there 6 weeks after they were born 10 weeks early. I went into preterm labor at 26 weeks and ended up with a helicopter ride to the hospital. It was years before I could see that helicopter and now cry. It was years before I could watch any show with a preemie and not cry. Most of my family didn’t understand, they still don’t to this day. The NICU changes you and hopefully at the end of it you are taking home a healthy child, but you are always reminded because of what you saw that that is not always the case. Thank you for writing this post. I’m sure I could ramble on some more, but I need to head back to work.

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