When PTSD Is a Result of Leaving the Safety of the NICU

Nearly six years have passed since our family was first introduced to the NICU at Children’s Hospital in Minneapolis; I have struggled long and hard since with PPD/PTSD.

• What is PTSD?

A year or two after our twins were home from the NICU, I stumbled upon the studies showing an increased risk for PTSD in moms who spent time in the NICU; I felt like I had found my tribe. Until that point, I couldn’t figure out what was wrong with me. How could I continually feel worse when my boys were continually getting better? Why am I going downhill when they seem to be making strides forward? I should be elated. I should be grateful. I should feel blessed. But as I read on about PTSD from extended NICU stays, I found familiar voices in other moms expressing the same exasperation and I started to feel a little more “normal,” as you do when someone reaches out and says “me too.”

Where I start to differ — although I suspect I’m not alone — is in feeling symptoms of PTSD upon returning to the hospital. I will often read stories of moms who’ve gone back with their children for follow-ups and are still triggered by sounds of alarms, monitors, the smell of antibacterial soaps and sterile environments; the site of other medically fragile children. Five years of follow ups at the same hospital and I have yet to experience this unsettling feeling. Instead, I feel like I’m back at the safest place in the world.

If the isolette was meant to mimic the womb for the boys, the NICU, and Children’s in general, also mimicked a womb for me. All my basic needs were taken care of. I was fed by the chefs at the cafeteria who made the best omelets, the volunteers at the Ronald McDonald House who provided warm meals, the staff at the parent resource center who always had fresh cookies on hand. I was clothed — by prayer shawls, gifted sweats of the softest fabric, aroma therapy slippers. I slept in a private room at my best friend’s home just a short drive away. I could breath. There were no demands on me from work or home and I was able to completely focus on giving my emotional energy to the twins. My husband was back home getting our oldest son off to daycare and providing him his daily routine. He then went off to work to keep us financially afloat. Back at the hospital I could do what I was good at; I could research and learn. I could ask detailed questions about their condition and be fully engaged in their progress and care. I could find creative ways to connect with the twins. I could write; I had time alone every day to journal our story thanks to Caring Bridge, which was therapy in and of itself.

I had daily access to the best chaplain who provided a safe and understanding place to vent my frustrations with faith, religion and the unending questions of why — why did our sons have to endure this? Be subjected to this? Lay alone in an isolette for days and weeks before they could be snuggled? Why did I have to see my one son turn grey half a dozen times, holding my breath until he finally remembered to take his? No one should have to see this. How am I to open up and love my other son with no guarantee of his survival? Why do some babies make it through and others never get to go home? The Chaplain provided me the gentle presence in these moments of anger, fear and sadness. And for the nurses who witnessed these types of events every day — they were my steady support team.

The nurses who cared for our sons were wickedly smart and alert and equally compassionate and caring of not just the boys, but me as well. Nurses were there for every breath the twins took, every poop they made, every ounce of IV nutrition or breast milk they received; they were aware of their temperatures, their sats, the medication doses that were constantly tweaked. All of these things were diligently monitored by these heroes every minute of every day. If something was off, they were going to catch it. I was never alone in caring for my boys.

All that changed the day we were discharged.

 

Coming home should have been the happiest day of our lives. We waited just over four months to be reunited under the roof of our home. But there was little joy. There was, however, a lot of terror. After being constantly watched by the best medical professionals in the country, we now found ourselves two hours away from the experts. Both boys were on monitors to alert us should they stop breathing. One was on oxygen. We were now fully responsible for administering medications, checking oxygen levels, tracking wet and soiled diapers, taking temperatures, making special formula so Will wouldn’t aspirate and cause further damage to his already fragile lungs. The job of nurse, and now back to the job of running a household and trying to give the deserved attention to our active, social 3 -year-old, too. My husband returned to work, our closest family was one to two hours away and visitors were supposed to be kept at bay as much as possible. It was a ridiculously isolating time and all the supports that kept me sane in the NICU during a very trying time had disappeared just as the demand for my presence increased substantially.

I remember during the NICU days feeling so guilty for getting full nights of sleep just miles away from the hospital while nurses tended to the twins and my husband tended to our oldest son at home. Oh the guilt. But once back home those days were over as we juggled feeding the twins every two hours and consoling a 3-year-old with night terrors. If only I could have banked those sleep hours in some reserve.

It’s not that we didn’t have any help upon returning home. My mother in law would come one day each week and more if needed. My mom came for an extended stay to get us settled into our new routine. Our Rocking Grandmas — “adopted” grandmas — would come one morning each week to allow a trip to the store or just some one-on-one time with our 3-year-old. And I just came across an old email today from a friend offering to come clean for me. But asking for and receiving help was really hard. Things were so unsettling, so chaotic, that I couldn’t possibly let anyone in. My nerves were shot and the thought of having anyone see me in this state was really unbearable. I didn’t want anyone to know how bad I was at this. I did not want to be judged. How could I be so disorganized when my sons’ health depended on me being on my game? How could I keep a sterile house when it was always such a mess? I was angry, afraid, tired and not myself. I no longer knew how to be around people. And I felt completely incompetent when it came to the job at hand.

It’s unsettling to me that NICU Awareness Month overlaps with National Suicide Awareness Prevention Month. The link between PTSD/PPD and suicide are alarming, and the thin line between these is a terrifying place to be. I have learned to reach out for help, but I wish I would have known how to do so sooner. I have the most amazing boys who went through so much to be here and an older son who had an innocent childhood interrupted by events he couldn’t understand. They deserve the best I can give them.

It has been a long journey to gaining any sense of confidence in my ability to care for my sons and keep them safe; providing them some sense of normal amidst my struggle with PTSD and depression. The amount of love, support and attention we received during our NICU months were life-sustaining to all of us, and still, six years later I marvel at the support we had. My biggest wish this NICU Awareness Month is that in coming years we could also have post-NICU Awareness Month because the grief, the sadness and the fear don’t end once you walk out those doors.

For you moms who are experiencing this and wondering why you aren’t feeling more relief, more joy, more good days — please know you’re not alone.

For those who have friends or family who’ve been through the NICU — please don’t assume it gets easier once they’re home. Coming home can in fact be the scariest part of the journey.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.