A Scary Sleepover (Post-traumatic Stress and the NICU)

Well folks, we’ll be packing our overnight bags. Jaxson will be staying overnight at the hospital. Even though I am happy that he will be recovering from the two surgeries in a safe place, I’m having a very intense reaction to this news. I’m anxious (more than usual), I’ve been having nightmares, and I keep reliving the experience of having Jaxson’s hooked up to all those monitors over and over in my head. In one particularly bad dream,  Jaxson falls off the bed. I reach out to catch him and I come up with a handful of monitor wires. They snap off and Jax falls to the floor (which, of course, is more like a mountain cliff.) It’s so real that when I wake with a start, I check the floor first. In my dream, there is no way he could have survived that fall and I’m panicked. There must be something more to this…

So, I searched “Post-traumatic stress and NICU.”

Hand to Hold (a preemie support organization), has an article about parents who experience post-traumatic stress disorder (PTSD) as a result of their premature birth and subsequent NICU stay.  I also found a blog post from another preemie mom that really hit home with me. Wouldn’t you know it. This is a thing. I’m not the only one.

Mayo Clinic defines PTSD as a:

“condition that’s triggered by a terrifying event. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.”

That about sums it up. It’s obvious that Jax’s birth and NICU stay would qualify as a terrifying event. Every single day for the first 2 months, we did not know what was going to happen. We did not know if Jax was going to make it. (I never doubted that he would, I just didn’t know if he would. Does that make any sense?) It was especially difficult when the doctors would say things like “Many 23 weekers don’t leave the NICU.” and “Hold him and touch him as much as possible. He may not make it through the night.”

I remember very clearly one day when my best friend came to visit at the hospital.  I had been at the hospital at that point for 12 hours because Jax was having a very difficult day and was having a hard time keeping his oxygen levels in check. During our visit, Jax had a spell (where his oxygen levels plummeted and his heart rate dropped dangerously low). At this point in our NICU experience, I was relatively used to seeing this happen. I knew what to do and immediately started rubbing his back to remind him to take a breath. I (tried to) kept calm and noted the numbers to tell the nurse who arrived just seconds after the alarms went off. Then I looked at my friend’s face. There was horror there. There was a look in her eyes that told me just how serious our situation really was.

I think that parents of kids that require extended hospital stays (for whatever reason) are some of the strongest people on the planet. We are physically strong: we endure hours of uncomfortable surroundings,  terrible food (or no food at all), and no sleep. We are emotionally strong: we watch our babies get poked, prodded, scanned, and (sometimes) sliced. We keep a constant vigil hoping and wishing that they can hear us through the plastic walls of their incubators. We have to make decisions about whether to continue care or not. We live with stress and day after day of bad news. We have to make sure that we keep everyone updated: we tell our story over and over again.

I’m not sure if I’m dealing with full-blown PTSD, but I do know that tomorrow will be a test for me. Will I get to the hospital and “buck up?” Or will I get there and panic? I suspect that I will be fine (I usually am.) And Steve will be there, too, which will definitely help calm me.

But even if I am just fine tomorrow, now that we have had a chance to process some of the things we went through, it’s time for me to face the fact that I am suffering from some post-traumatic stress from this experience. What do I do about it?

Well, as you know, I write. And I talk to other parents who have been in similar situations, and I talk with parents who are just beginning their journey because I have something to give to them: hope. And (some) knowledge, I think. I’ve had many parents reach out to me recently asking for advice on how to get through the NICU experience. It makes me feel better to give back. It helps me heal.  So, I started a Facebook group for other Minnesota preemie parents where we can connect and share and heal with other parents who just “get it.” If you are a preemie parent, either just starting out on the journey or a “seasoned” parent, and you want to join us, we’d love to have you. You can find out more and request membership here: www.facebook.com/groups/MNpreemieParents.

Healing won’t happen overnight. As a matter of fact, I’m pretty certain that our experience will always be with me. It’s changed me. The things that I thought were important before aren’t as important. I take less for granted. I’m much more cautious with germs. I value life more than I did: the physiology of our bodies, the actual miracle of breath. It’s this openness and awareness that will be the key to healing for me.

I’m sure Jax will do fine tomorrow. The surgeons are the very best at what they do; they’ve done these surgeries thousands of times. He will be at Children’s Hospital; they take care of children all day long. He will be in good hands. We will keep you all updated via our Facebook page and will try to write an update with more details after he’s awake and ok. As always, we would appreciate your positive thoughts and prayers that the surgeons have a steady hand, that Jax handles the anesthesia well, that Steve and I can keep each other calm, and that we’re all home safe and sound by noon on Wednesday!

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This is a seriously hilarious face if you ask me!
Jax is saying “Geeez, Mom, try to relax!” (This is a seriously hilarious face if you ask me!)

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

14 thoughts on “A Scary Sleepover (Post-traumatic Stress and the NICU)”

  1. I’ve been praying for Jaxson as well as you, Andrea and Steven, for months and will continue to do so, God is the great physician and is able to do anything we ask that is in his will,. His love for you and Jaxson is so great it’s beyond understanding. I’ll never really able to grasp the love our Heavenly Father has for each of us by allowing his only son to suffer and die for each of us. Wow! I don[‘t think I could keep going if Jesus had not risen from the dead and sent his Holy Spirit to us.

    I pray for Jaxson to become strong and be able to breathe normally. (I have COPD and can empathize with his struggles. That reminds me to pray for him! That’s great news for me to know why I’ve this condition.)

    I pray that you will get good help for the strain this has had on you both physically and emotionally PTSD is so real. Flashbacks are MORE than real because everything that may have happened over a long period of time is smashed into seconds. You hear the sounds, smell the odors, feel the panic and in a way live it all over again. There is help for those who have PTSD or any other type of anxiety disorder. Counselling is so important and sometimes meds are needed to help you over the bumps. I’m the voice of experience with PTSD.

    I pray that through this trial you will come to the saving grace of Jesus Christ like your Mom Gwen had and your brother Adam. May you be blessed by bushels today as you grow closer to God.

    Gramma Karen


  2. Keeping Jax in my prayers tonight. No reason not to believe he will come thru this in true Jax form. He has amazed us all so far, think tomorrow will be no different!


    1. Andrea and Steve,

      Jaxson has forever changed you both and he couldn’t be in better hands than his loving parents. You’ve all gone through rather remarkable times and God has seen you through and made you stronger because of it. Put your trust in Him to see you through yet another event in your lives. He cares for each of you and has brought you this far for a reason. If the hospital has a chapel, I encourage you both to visit it while little Jax is in surgery and let God know your thoughts, pray to Him, share your heart, listen to His voice and know that His Word will not return void.

      Please find comfort in knowing that I and many others will be joining in prayer and asking God to give you peace, assurance, and strength for tomorrow…and for His hand of protection upon little Jax.

      God Bless Your Family,


      1. Oops!…I used my Nook to post without realizing I was replying to Anonymous and not posting my own, sorry about that =]


  3. I hope the surgeries go well. If you’re not already post op, I can tell you post op is really harder than in the NICU. I think it’s because they wake up in a new place and are old enough to remember it. Post op sucks. Lots of uncontrolable crying and the nurses look at you and ask if this is normal and then you say, “how do I know????”. From the other moms I’ve talked to it’s normal. Didn’t know that until after the fact, of course. Yes, PSTD is very real. I’m going to my first counseling session this afternoon. Took me long enough! But in all seriousness, I don’t know that I have PTSD (thank God for writing), but DH does. It’s very real.


  4. Steven, Andrea and Jaxson, Sending prayers and positive thoughts for a successful outcome tomorrow. You all have been through so much and shown such courage, strength and love.
    I’m here if you need anything.
    Love to all of you—Grandma Jan


  5. Will be thinking and praying for you all tomorrow. Though I know Jax will be fine and so will you! He is a miracle baby after all! Show ’em how it is done Jax!!


  6. Our prayers and positive thoughts for you, Jax and your family will keep you strong. Love your blog, keep up the good work!


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