Hand to Hold's Official Blog: Written by Parents for Parents

This Is The Face Of PTSD #preemiemoms

preemie mom ptsd, ptsd after nicu

I’m sitting on a slotted wooden bench, nearly shoulder to shoulder with the other moms. We’re strangers mostly but we share a common thread, linking us on this bench as we talk among ourselves, pausing often to gaze intently through the two-way glass set deep into the wall we’re facing.

Those are our babies in there, just on the other side of that glass, in someone else’s charge.

One of the mothers asks me about my daughter.

I smile as I point her out, my tiny wisp of a girl who is the littlest one in the room.

We watch as she stretches up on tiptoe and twirls across the floor before the instructor sends her back to the bar with a gentle admonition that she has gone too early, to wait her turn behind the other dancers, and I laugh as I tell them how she’s never been one to do what was expected of her.

It’s a Friday morning toddler ballet class  and sitting on this bench laughing, in my infinity scarf and shiny pink lip gloss, no one sees the post traumatic stress disorder.

It was at one of those ballet classes when the thought flitted across my mind. “This is how my life with her started. Sitting in an uncomfortable chair and watching her through the glass.”

It feels wrong and out of place because we are here, three years on and healthy at dance class and I am thankful and where did that come from?

I remember the first time it happened, the dark panic infringing on an otherwise bright day. I ran into an acquaintance, belly round and beaming with pregnancy glow. “I’ll be 25 weeks tomorrow” she said as she rested a hand on her bump and I felt my body freeze.

Excusing myself in what I hope was  a polite manner I made my way to the ladies room where I sank into a stall and tried to breath through the panic. I felt crazy, room spinning and unable to stop the thought that was unfurling like a banner in my brain: “I know what her baby looks like inside her body right now.”

I have seen that gestational age outside of the womb and its image will forever be beautiful and haunting.

There were other moments. They would come when I least expected, in circumstances that I would not foresee as a trigger, and then I would feel the tears wet my cheeks. I didn’t cry when I sat waiting to see if she survived the surgery or when I held a tourniquet on a blown vein as a nurse called out the door for help or when I twisted a length of tube through my fingers and practiced putting it down her nose.

But then two years later I run across a miniature blood pressure cuff, just a couple of inches in diameter, and I suddenly break into a torrent of tears accompanied by a pain that felt like daggers.

There are also the nightmares, the ones where I am back in the NICU, weaving my way between the rows of isolettes and I can’t find her. I can’t find her and I know she is gone and no one is telling me and I just want to hold my baby. There are those nights when I wake up in a sheen of sweat and silently slip into her room to watch the rise and fall of her chest because I can catch my breath again when I hear her exhale.

It comes less often now and I am stronger but I don’t do this alone. When the pain bubbles to the surface I press into my support and I let them support me. I spent so much time during our NICU stay focused on the health of my baby and attempting to be strong in the circumstances that I pushed away my own emotions and now when they flood in unexpectedly I reach out and accept the help.

So now when the thought trickles in at ballet class I can take hold of it and turn it around.

They told me she might never walk and now I watch her gleefully spin in circles, arms in first position and I am so proud.

We have both come so far.

(Even if the teacher is telling her that what she is supposed to be doing is plies.)

If you think you might have post traumatic stress disorder, which is not uncommon among parents of preemies, please talk to your healthcare provider and ask your hospital for references to a local support group. My preemie mom support group is invaluable to me, even three years on.

Kayla Aimee About Kayla Aimee

Kayla Aimee (GA) is the mom of a micro-preemie, Scarlette, who was born at 25 weeks gestation at just 1lb 8.6 ozs and spent 156 days in the NICU, facing a myriad of issues from PDAs to milk protein intolerance to sensory processing disorder. Scarlette is now a feisty four year old who spends her post-NICU days charming everyone she meets.

Kayla Aimee is the author of Anchored: Finding Hope in the Unexpected, a memoir detailing their journey with prematurity, born from her love of writing and her passion for providing support for parents of preemies.

A southern girl through and through, Kayla Aimee writes about faith, family and her favorite things at www.kaylaaimee.com and loves chatting with other parents on her Facebook page

Comments

  1. Michelle HenselMichelle Hensel says:

    I could have written this post almost word for word. I’m a dance teacher and teach my own tiny preemie who is now almost 4 years old. She is also the smallest one in class. I think about how tiny she was and how we didn’t know what she might or might not be able to do, and then I see her twirling around with a ribbon in her hand. It’s amazing. I’ve also had the thought of “I know what your 24 week baby looks like inside you right now”. I thought I was strange for thinking that. Great post!

  2. I can’t call my feelings PTSD because I’ve never received official help or support, but I know those sneaky moments of horror. I have pushed a lot of my triplets’ NICU time (and following infancy) into a dusty corner of my brain, but they crawl out without an invitation. I struggle with pregnancy talk when friends hit 25 weeks (when PTL put me in the hospital), and I check out at 28 weeks, when my trio were born.

    A tweet one day sent me into gasping sobs, something about a 29-week fetus moving around just like a “real baby.”

    Oh, man. There I go again. Having people in social circles to say “I struggle sometimes, too,” really helps, especially since I never felt the need to receive formal help.

  3. Well written. I was surprised for a moment to learn that preemie parents experience PTSD–but only for a moment. It makes perfect sense, really. Made me ponder just how many people are out there, having experienced this or some other traumatic event, who don’t have a network to support them or resources to get help. I know who I’ll be sending loving thoughts/prayers out to today!

  4. This is sheer brilliance. Thank you for telling our truth.

  5. Samantha madrid says:

    Thank you for this post. I can relate 100% being that it’s what I am currently dealing with. My daughter came three months early and her health became my worry intstantaniously. Forget that I just had surgery, forget that I almost died….none of that mattered at that moment. It wasn’t until she came home, 103 days later, when dealing with myself seemed like a necessity.
    I felt guilty at the idea that I needed time to focus on my feelings. I couldn’t imagine taking a second out of my day to make sure I was feeling alright to care for my angel.

    She was home yet I was crying more. The Nicu was in our distant past yet the smell of hand sanitizer did something funny to me. It was then, 2 months later when I was finally beginning to deal with everything. Everything form the delivery, her Nicu stay to the fears of having her home. It all hit me at once and I was a mess. After talking to my dad I realized this wasn’t the way I wanted to feel.

    I called up my dr, not really sure if he could help. Making that appointment was the BEST thing I did for both me and my daughter. He suggested PTSD was to blame paired with depression. Since then I feel stronger. The crying has dwindled and I feel like I can now finally start to enjoy this special journey of ours.

    I think it’s imparative for not just moms but families of preemies to speak to someone. Although you may feel fine now, talking to someone or yourself for that matter, could better prepare you for later. Ladies we are strong! Don’t ever forget that!

    I apologize for dragging this on it’s just that it hits home very much. Thank you again 🙂

  6. My heart goes out to you for all you went thru and things like this that still come up. I had a small taste of the NICU experience with my little boy in there for 2 weeks. I watched the nurses and doctor rush a baby twice his size in there one day, alarms blaring, and work tiresly on her for 2 hours strait–and realized how lucky I was for only experiencing the little that we did there. I can see how parents can have PTSD from the experience. I know the cuff you speak of–they cheerfully give it to me to put in a baby book for him because its “sooo cute!” And all I could feel was the deep desire to run from it and never see it again. I often thought of your project to provide knitted hats for NICU babies while in there and my little one had one and a blanket made from another loving volunteer…and realized finally what stuff like that means to a parent. Thank you for all the work you do in being an advocate for NICU parents, you–and your gift of words–are such a blessing to so many!

  7. Thank you. A million times thank you for putting this out there. It is sometimes difficult to accept PTSD because it seems reserved for soldiers and others who have been through REALLY traumatic events. Then I realize that having a baby at 23 weeks is a REALLY traumatic event. I don’t even verbalize all the paranoid thoughts I have and the almost overwhelming anxiety. Like you, and others, I try hard to live in the moment, but those memories sneak in out of nowhere sometimes. Sometimes I wish it would all just go away, but recently all this pain is pushing another micro mom and I to start a support group in our area. Thank you for mentioning how valuable that support is to you. Again, thank you for this post, for validating the feelings that so many of us have.

  8. Thank you for sharing this. My preemie was born at 23 weeks, 6 days and will be seven in just a couple of months. In the last seven years, I have experienced many of those instances, the chest-tightening flashbacks and the irrational fears even though she’s perfectly “fine” now.

    It wasn’t until just a couple of years ago I even realized it was PTSD. I struggled through it alone and I urge anyone who has a preemie to take make sure they take care of their own mental and motional help.

  9. For me it was 7 years ago, but sometimes….it’s yesterday. Twins born at 32 weeks and then separated for 5 months as my son goes home and my daughter remains in the NICU. 5 months of going back and forth, always in the “wrong” place since I was with both babies. Now fast forward, intense flashes brought on by a trigger no one can see….Pachabel music, that played on her mobile in the hospital, a piece of clothing, a storm, the light at a certain time of the day. Reactions that to others are exaggerated, but to me are normal. A very intense 4 years of medical intervention controlling our existence followed by the quiet of the last few years, with our first flashes of “normal” ever. Twins are bright, happy, social, and yes..now healthy. The judgement of people who don’t understand how no amount of normal will ever change that which was. It isn’t dwelling on the past….but pushing through the fears and trauma that networked our lives for years. Trying to emerge from the isolation. But still, the judgements. Panic and leaving a mtg at work (I am a single mother) because someone has come into the mtg proudly announcing their dedication to work by coming in very sick. I leave, called a germophob. They have not watched how one cold turned into emergency hospitalization. And what it does to you to watch your child be “brought back” right before your eyes. Yes, now I watch as my twins run on the soccer field, climb trees, go to birthday parties. But the PTSD is silent, weaving through my days pushing invisible triggers. Less now, but there, and not understood.

  10. ^ What you all said. My 24-weeker, surviving twin, is a healthy, happy, hilarious 2 years old. And I still have nightmares and I still have moments and I still get REALLY MAD when someone wishes their pregnancy wouldn’t take so long. Not being alone in this is so helpful. Hugs to all preemie parents and your precious wee ones!

  11. All your stories are so familiar…does anyone know of special support groups out there?

    • Hi Lynne,
      Hand to Hold moderates a NICU family support group on facebook called Life After NICU. Visit http://www.facebook.com/lifeafternicu to ask your question or post a celebration. Of course parents connect on the PreemieBabies101 facebook site as well – http://www.facebook.com/preemiebabies101

      We also match NICU and bereaved parents with seasoned parents to provide emotional support. Parents connect with another who has walked a similar path via email, social media and the phone. It doesn’t matter where you live, and it can last as long or a short as you wish. Contact us at support@handtohold.org and we’ll get you connected.

      Your hospital may also have support groups, too! And no doubt there are many communities of NICU grad parents online so you should have many choices. Hope this is a help to you.

      Amy, Fellow NICU mom

      • Thank you Amy, I will check out all those references. Realizing now that although time has passed, the issues have become more hidden. I no longer give myself permission to panic, but still do. It can be one cough at night, or a lower SAT rate. Initially, I tried being a normal single professional mom of preemie twins (is that a thing??? 🙂 but could not relate…to anyone other than those who shared some similar experiences. I am better at pretending now. I think most of us don’t know our own strength that we don’t know how to open ourselves up to help…at least me anyway, and when I’ve tried, the lack of understanding by others have made me less open.

  12. I was brought to tears reading this story. It felt as if it was me writing this. My 27 weeker who is now 2 years old is my true miracle who has kept me on my toes. I have not seeked help for any of my feelings because I thought that time would heal my wounds. Now I know I need it because those feelings are not hidden anymore and are just at the surface. Any and almost everything makes them show up. My wish for me is to look back and celebrate his life and not mourn his traumatic birth. Thank you for allowing to shed some light on this.

  13. Rochelle says:

    I Couldn’t Have Written This Better Myself. My Micro Is 13 Months And Our Daily Struggle To Avoid A G Tube Is Overwhelming To Me. Her Dad Has Left Her So Long Ago And It’s Difficult Doing This On My Own. I Mentioned Ptsd To myself About 6 Months Ago. Being In The Military Myself, I Felt Selfish Thinking That Considering Our Many Soldiers Who Have Witnessed So Many Horrors. I Realize I Need To Cut Myself A Break Because I Had My Own Horrors For 106 Days In The NICU And Then To Come Home And Have Her Regress Has Been A Living Nightmare. This Post Made Me Realize I Need To Talk To My Doc For Myself. Thank you.

  14. The moments of post traumatic stress in this story really hit home for me and I am the grandmother to 26 week twin micro preemie granddaughters. From a grandmother’s experience, I realized the first time I had to go to the hospital, a month after the twins 96 day stay in the NICU, it was happening. My daughter asked me to take her to the Emergency Room & as soon as they hooked her up to monitors, I lost it. The room started to spin, I could barely breath & I realized all the emotions of the twins NICU stay were flooding back. Watching the monitors for hours as they struggled to live, praying & willing the “right” numbers to stay & almost unable to breathe when sometimes several times a day the numbers set off the alarms, causing a flurry of activity from the staff. Aside from my constant concern for my granddaughters, I felt hopeless to help my daughter & son-in-law cope with the daily challenges in the NICU. Grandparents walk a fine line during the NICU experience, perhaps that is why the post traumatic stress occurs. When my granddaughters were in the NICU, I wanted to be strong & positive for their parents. But,that comes with a price emotionally. I dreaded Rounds every morning & night – 9:00 am & 9 pm. While I knew one of my granddaughters was struggling much more than her sister, just hearing the doctor start with “the sick twin” crushed me. Since the twins came home 3 months ago, I start to get a strange feeling of dread at both 9 am & 9 pm – now I know I am reliving Rounds & the fear of what we might hear. I also watch the babies by myself, when my daughter needs to leave . Even though these are for short periods of time, I find myself watching every breath if they are sleeping. I also mentally go over CPR in my head, just in case. I am not sure when the post traumatic stress will end, but I am so grateful for this site to read others experiences & share my own – that gives me peace knowing when it happens it is okay to have those feelings.

    • Susan,
      I know the dread….it does fade, but spikes up ith waves rushing back. In response to the rounds and the doctor’s comments, there are those that have the capacity for empathy, and true listening, and those that follow a protocol in a scientific and rigid manner….seemingly unaware that it a baby is not a protocol. Some of my worst times are from the decisions & comments made on rounds.. They don’t realize the impact, which is like a stone thrown into a pond….the ripples continue on and on. I remember 1 dr, during rounds, changing my tiny baby girl’s feedings. He decided to put her on “demand” feedings. I heard “demand” feedings and immediately a wave of panic lit my body on fire…..they were starving my baby. She was barely holding 4 lbs at 4 months and was on a 4 to 1 ratio with nurses. So “if” she did cry and the nurse was feeding another baby what messagewas that giving to my baby? They would be teaching her that her cries of hunger meant nothing. I cried I begged them to reverse the order, but they said they couldn’t and he wasn’t around. After much tears and pleading, I told them that they took my baby, I had no say. I couldn’t function that day, I went home to be with her twin, where I cold be a mother and care for his needs without anyone interfering. I went early the next morning and made them teach me how to make her complex formula. I called in other neonatologists….no one would go against their peer. I got in their way, fed my baby through the day, caused a scene when they moved her room, again, an act that automatically stopped all feedings for 3 to 4 hours. The nurses could not override orders, but they let me move her myself. The nurses began to weigh her, again and again until they documented a weight loss, significant enough to reverse the doctor’s order. That was 2 days of our 149 day stay. Looking back I can now see how much more helpless my parents were than me. They got to watch their daughter and granddaughter suffer. My mom spent most dayswith my son, determined to give him all she could due to the circumstances. She later told me how she took my baby girl, after her arrival home, all over the backyard and house, wanting to make sure she knew where she belonged and wanting her to see the flowers and trees, after all that time inside. Her heart leapt when after learning to crawl, she crawled to a group of grandmothers seated in a room at a special event and crawled directly to her pulling herself up on her legand ignoring all the other grandmas….it wasa special day for her. Dedicating herself to making sure her grandbabies knew their family and felt safe was important to her. And as her daughter, despite the fear I now know she had for all of us, she was”there”. Always there. By the way, I cut out the steps of the CPR directons and taped them to the wall….they remained there for years, thankfully without a need to reference them. The fear is something that we learn to live with, some days better than others. Your daughter is blessed to have you.

  15. Lynne, Thank you for your kind words & yes “being there”, even though it meant I saw everything good & bad in the NICU, was the one thing I knew I could do to help. Somethings will never be forgotten and I wish I did not even know about – like the third day when we lost our more fragile twin and by the Grace of God her heart started again after the doctors worked on her. My daughter was out of the room pumping at the time and while the doctors told her the baby coded, but was now stable, she kept asking me if that meant Olivia died. I was still so traumatized, I told my daughter I was not sure, but we had to thank God she was survived the incident. While part of me wishes I had not witnessed her heart stopping, I was determined after that incident to be there no matter what – for my granddaughters and daughter. I’m sorry you had such a terrible experience during Rounds with your daughter’s feeding being changed. You are an amazing Mom and did the right thing by challenging the doctors and taking the matter into your own hands. You know your baby the best and you fought for her! That is the remarkable thing I learned watching my daughter during the NICU stay. Like you, she trusted her instincts and challenged the doctors multiple times. I know the future for my granddaughters, especially the next few years, are uncertain. Like you leaving a meeting when someone comes sick, my daughter will put the babies health first. I loved your idea to post the CPR – definitely going to do that. Your parents raised a remarkable daughter who appreciates and understands how they feel as twin preemie grandparents – you and them are very fortunate! Thank you again Lynne for taking the time to reach out to me. I appreciate it more than you know – God Bless! Susan

  16. Patricia Mack says:

    Oh, how I wish this was around 20 years ago! I knew I was struggling – but had no where to take it. I could not relax and enjoy the experience of motherhood as I should have – even after my preemie was home and healthy and growing…The fear and the GUILT never left me. It was years later, when my second child, was born that I finally came to an understanding within my heart…My daughter, who weighted 2.5 lbs at birth is a beautiful, intelligent young woman today. I am blessed.

  17. Christine says:

    This post is brilliantly written and exemplifies my personal quest towards the addition of mental health nurses into all NICUs in order to support the needs of parents and staff. I am a mental health nurse by trade but also, more importantly, a Mom to twin girls, born at 24 weeks. My girls endured quite a wrath of invasive medical procedures and surgeries and both came home, after 4.5 months, on supplemental oxygen. We did not leave the NICU behind us; rather, it came home with us. Unfortunately, the feelings of fear, constant emotional uncertainty, depression and PTSD heightened upon discharge due to the sheer isolation. As such, my proposal encompasses a provision to extend support (including home visits) to families transitioning out of the hospital and during follow-up. Too bad that budgetary restrictions and constraints of the Canadian Health Care System are thwarting such efforts to enhance family centered care.

    • Very true. My twins were 32 weeks, one in for 2 weeks, the other for 5 months. The doctors called in a psychiatric nurse, as I was torn leaving one twin in the hospital. The psychiatric nurse was very comforting, supportive. But referring me to the male hospital psychiatrist, I was told to go back to work (I am a single mom) ….told to keep my original post pregnancy plans. I was having daily panic attacks. I watched the face of the psychiatric nurse as this doctor spoke to me. Her face fell. I could see she was shocked by his advice, his insensitivity. She couldn’t go against her superior. I dropped him, found a psychiatric nurse who wrote me out on extended medical leave due to ptsd. It’s been 7 years now. There are times I wanted to write him a letter….telling him the further damage he caused. But As the mother of a NICU baby, you know how we ave to save our energy, for the multiple battles that are necessary to fight. I’ve thought of calling her, to tell her to get away from him,trust her gut….but again, it’s a wound I didn’t want touched. But you are right, very right. The support, help should be there ingrained in the system that we lived in. You are so right. Bless you for your work

  18. Lynne, I would encourage you to write a letter. Even if you don’t send it. I wrote to both doctors at my son’s delivery to thank them for their efforts to contribute to our 23-seekers eventual discharge from the NICU. I’ve always wanted to write to the MFM doctor who assumed my son wouldn’t make it. I want to tell her to give moms the steroids and not to talk about future pregnancies while there’s a baby who deserves a chance. I know it would help me have some closure about that part of my journey. I’ve also wanted to write to my OB, who told me all was fine, dismissing my concerns, then dropped me like a hot rock after my son was born. Never heard a word from him. Even if I never send them I just want to get those feelings out and try to let go.

Trackbacks

  1. […] Often when I’m reading other blogs that my friends have shared, I think “I really should write about this!” and then file that idea away, and promptly forget about it. It’s rare that I read something and immediately feel the need to write some of my own experiences out after reading a post. Thanks to Lesley for sharing this post. […]

  2. […] have written before about my PTSD following having an extremely premature birth and extremely long NICU stay. It swirls around me the most when Scarlette is sick, suffocating me […]

  3. […] have written before about my PTSD following having an extremely premature birth and extremely long NICU stay. It swirls around me the most when Scarlette is sick, suffocating me […]

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