Coping with Life Outside the NICU

by Erica Johnson

The Beginning

Having a child is filled with peaks and valleys. Having a preemie is filled with those same peaks and valleys, but having a micro-preemie sometimes the valleys outweigh the peaks. My lovely daughter Avery was born at 25 weeks 3 days gestation. She is my first born and of course my first encounter with the NICU. Before having Avery I had never been inside the NICU or even knew of anyone who had a child that had to stay in the NICU. When my water broke at 23 weeks and I was admitted to the hospital for the duration of pregnancy, the fears of having a “normal “pregnancy vanished. I didn’t even know I was in active labor until I was told I needed to push at 25 weeks. I went into survival mode. As humans we never know what we can handle until its staring us in the face. There are times when I look back and think: I made it through that? How? 

Avery was born on April 17th, 2016 at 5:22am. She wasn’t breathing when she was born and one of her legs was bent to the side. The doctors were able to resuscitate and intubate her in my room and then they rushed her off to the NICU. She weighed 1 pound and 10 ounces at birth and spent 82 days in the NICU. I was rushed to surgery due to the amount of blood I lost and complications with my placenta. After I got out of surgery and my husband rolled me towards the NICU my only thought was:  Am I strong enough for the both us to survive this, physically for her and mentally and emotionally for me? I couldn’t even hold her due to her skin being translucent. 

I didn’t want to touch her out of fear of making it worse. I didn’t know if my physical touch would delay her growth. I was scared. As a mother I was scared to touch my first born.  I just stared at the incubator watching her chest rise and fall, rise and fall. I kept telling myself that’s a good sign, Erica. Then I heard the machine’s humming and peeping in the background. They reinforced the reality that although her chest was rising and falling, it wasn’t happening on its own. She had help. A lot of it.  

Avery was off the ventilator and placed on oxygen before I was discharged from the hospital. This meant she was progressing. At that time I thought ok that’s good, but I just didn’t know how to celebrate the small milestones or that I should “celebrate”. I just wanted her home. I didn’t care about the little successes that would eventually be her stepping stones to becoming a NICU graduate. 

I read an article on bbc.com that parents who have had a child in the NICU suffer from PTSD-due to lack of psychological support like counseling or group therapies. As a parent who did struggle with PTSD, that statistic is not alarming to me. I know there are other parents just like me who didn’t seek the necessary help they needed due to the fear of the unknown and ashamed to admit that help was needed. There were real resources available to me once she born. This is my biggest regret. I was solely focused on getting Avery home and not on my own well-being. As parents it’s natural to put your child’s need before your own. Avery is now 3 and I still have moments when I have flashbacks. A NICU scene on a television show or even a commercial makes me pause, often times cry, pray and reflect on how the NICU is still impacting my daily life.

I had to customize my own survival guide on how to cope with life outside the NICU as no two NICU experiences are identical. I realized there are various factors that can impact the overall NICU experience included but not limited to: financial stress, mental state, family/friend support and baby’s health condition.

Pregnant Women: Grieving the loss of a “normal pregnancy”

When I was pregnant with Avery so were 2 of my coworkers and we were all due within weeks of each other. After having Avery 3 ½ months early, I couldn’t bear to see them. I didn’t want the constant reminder that their child was still in their womb with the ability to be born full term, while my child was laying in an incubator fighting for her life. The sight of any pregnant woman infuriated me. I was jealous because I didn’t get to experience the growing bump or even her kicks. All of that was literally ripped from me with no explanation. I knew it wasn’t their fault; but, at that point in the grieving process of a “normal pregnancy” it made Avery’s premature birth a reality that my heart wasn’t stable enough to endure. I needed to blame someone and in mind, at the time, pregnant women seemed like the perfect target because they were experiencing what I wasn’t, so to me it was their fault. 

I learned to look at the silver lining: God blessed me with the ability to see how beautiful Avery was 3 ½ months early. I didn’t have to wait 9 months. I was able to witness her personality, smile and facial expressions all of which wouldn’t have been present until her due date of July 27th.

Controlling what I can

My life is no longer controlled by machine beeps, NICU policy and procedures. Once Avery graduated from the NICU, I wanted to gain control over anything and everything I could. While she was in the NICU I ordered a 600 page preemie book of Amazon so I knew which questions to ask and at what time during her duration in the NICU. I took a crash course on preemies and the NICU.  It was my way of coping and controlling what I could. The more information I absorbed the more comfortable I became. Controlling was a viable coping mechanism for me. It gave me some power back and a sense of purpose. Once home, small things I could control helped the most in the adjustment to being out of the NICU. I was able to decide when she took a bath. This might seem small, but when bathing wasn’t a frequent task while in the NICU I was more than thrilled to be able to do this on my own terms. Even dressing Avery in adorable baby clothes that didn’t have easy access for wires and tubes; simple yet so significant. 

Communication

I encountered some difficult conversations involving answering family, friends and even strangers questions about Avery’s progress.  How long did it take her to do (fill in the blank)? Is she walking now? Can she talk? How is she eating? Does she socialize with other kids? Did she come home on any machines? What therapies did she need? Although these questions seem innocent, at times they would cause me to feel ashamed and anxious because it re-iterated the fact that Avery is different. I didn’t want her to be different in a way that forced people to treat her as such. It caused me to second guess her progress and how society will judge her compared to her peers. I had to politely address them and in the beginning I found myself leading with the disclaimer that she was born 3 months early. As if this would explain or justify my response to the question especially if it didn’t adhere to their expectations as to where she should be. This wasn’t fair to Avery’s progress and I realized I owed them no explanation.

The open communication shared with my spouse has been a blessing because he shared the experience too. He shared his fears and then some. When we enrolled Avery in preschool to begin in the fall of 2019 I had anxieties and reservations. How will she interact with the kids in her classroom?  Her teacher? Being away from home? Will she be judged? Treated differently?  I honestly was against it. I wasn’t ready. Avery’s period in the NICU has left me uneasy about simple milestones that should be joyous. The damage produced by the NICU experience has caused conversations about Avery’s well-being to become long wined and forced me to use an extensive pro and con list when making life decisions for Avery. My husband explained to me that she’s a toddler and needs do this in order to prepare her for her continued growth.  She needs to be exposed to a classroom. Simply put he asked me “isn’t this what you were advocating for while she was in the NICU? Wasn’t this the goal? I paused for a brief moment and I was at a loss for words because my husband’s perspective was insightful and forward thinking. This is what I’ve been waiting for since April 17th2016. This open dialog offers a safe place to be vulnerable about where I am in the process. 

Meeting your child where they are

Having Avery evaluated for PT/ST/OT services made me realize that each chapter in her life will take me back to her being in the NICU and that feeling of uncertainty. The NICU experience is chronic, everlasting and doesn’t go away but will continue to manifests itself in another form. This is my reality. I would only have so much control. Re-iterating the fact her journey will not be a like full term child. She will do things at a different pace and ultimately when she wants to because with her sassy personality, it only seems fair. I’m learning how to not insert my stress and anxiety for new challenges onto her.  Each day I’m coping with both of us being out of the NICU. Bottom line, she made it out. She’s here and thriving in ways I never imagined. Those small successes are massive now. We celebrate them all: from crawling, to first steps, first words and even the beloved toddler melt downs. Being in the NICU has taught me to live in the moment and know that it all has a greater purpose. 

Avery today!

Avery was exactly where God intended her to be. She was here. She survived when doctors didn’t think she would. It’s refreshing to live in the present, take it one day at a time and look at how far Avery has come. When unexpected challenges present themselves I stop, take a breath, and look at the bigger picture. Avery came into the world in a dramatic yet scary fashion and the impact she will have on it will be breathtaking.

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About The Author: Nicole Bugna-Doyle

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