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

Lessons in Preemie Motherhood

Kelli holding Jackson in Kangaroo CareMotherhood is a journey, and when your child is born early, it is normal to bear emotional scars from the experience. Over the years, I’ve found tremendous comfort in reading the experiences of other preemie mothers. Just learning that I wasn’t alone and that others had similar reactions made it easier for me to heal, to grieve the birth experience I’d wished I had and to release the guilt and shame for the complicated emotions I experienced surrounding my children’s early birth. Enjoy these lessons I learned and excerpts from Preemie: Lessons in Life, Love, and Motherhood by my friend and fellow preemie mama Kasey Mathews.

Lesson 1:  The guilt we experience following preterm birth can be debilitating.

It is so important that we allow ourselves to mourn the loss of the full-term, healthy pregnancy we had hoped for and let go of the self-depreciating internal dialogue that blames ourselves and our bodies for failing our babies.

“Why is this happening?” I asked. “What did I do?” My voice sounded far away. “You didn’t do anything.” The nurse on my right held my hand without looking at me. “This isn’t your fault.” Their shoes squeaked as they jogged alongside me. “I know I did something.” The nurses exchanged a look. My body started shaking. I was so cold. “I never should have played paddle tennis.”
“It’s nothing you did,” several nurses said at once. I thought if I could figure out why this was happening, I could make it stop.

Lesson 2:  Many NICU moms do not feel an automatic bond with their medically fragile child.

Much like Kasey, I felt tremendous guilt for calculating how soon I could try for a second pregnancy.  In my heart I thought my baby would be better off if he succumbed to his tremendous medical challenges rather than face a lifetime of disabilities.  I fought these feelings of guilt for years before realizing other moms have felt the same way.

Do over, I wanted to scream. Why are we doing this? I wanted to ask. Why can’t we just move on and have another baby? But I’d never say those words aloud, even to Lee. And I wondered what sort of mother would ever think those thoughts.

Lesson 3:  It is not uncommon for moms to feel detached during and/or after a traumatic birth experience.

I clearly remember repeatedly asking my husband to call the insurance company as I was prepped for my emergency C-section — the only thing I could “control” at the time.  Detachment is a normal and even healthy response to protect ourselves from emotional and physical pain.

I felt myself leave my body. I wasn’t there. That wasn’t me. There wasn’t really a baby. This was a play. A made-for-TV drama with me in the starring role. Any moment, a director would call out “cut,” and we’d break for coffee and doughnuts.

Lesson 4:  I believe a lot of my struggles with PTSD are directly related to my first visit to the NICU.

I was so unprepared for what waited for me behind those doors.  At the time, I did not even know what the acronym “NICU” stood for.  Nothing could have prepared me for seeing my son for the first time.  It took me years to forgive myself for not wanting to see the first photos of my own baby.  Knowing and understanding that my reaction did not make me a bad mother – or a bad person – helped me begin to heal.

Splotches flashed in my vision and my eyes went blurry. What was inside that box was something out of a sci-fi movie. I imagined a mad scientist, surrounded by boiling pots and smoking glass beakers, making these babies in the adjoining room. That couldn’t be a human baby, so pale, translucent, and alien-like. That could not be my baby. And just as I had this thought, I threw up all over myself. Other people in the room turned our way. The perky nurse went silent. And then she quickly wheeled my bed back out of the NICU.

Lesson 5:  Even surrounded by friends and family, a NICU journey can feel very isolating.

I believe this isolation during and after our NICU stay led to my challenges with depression.  The need to connect with someone else that truly understood what I was going through led me to found Hand to Hold – so that no mother or father will ever feel alone on their journey.

As I passed the other babies, I wanted to look at them, to speak to their parents. “What happened?” I wanted to ask. But I knew not to look. Lee had cautioned me on the way to the NICU about the hospital’s privacy rights. We had to pretend those other babies didn’t exist. We had to ignore the parents, probably the only other people on Earth who could understand how we were feeling.

Lesson 6: I was not prepared for the excruciating pain of leaving my baby in the hospital.

Although I knew he was receiving the best possible care – there is a primal, internal instinct to bond and protect our young – no one prepared me for the deep seeded, intense feeling of loss and loneness that engulfed me as our car exited the hospital parking lot.

When we got to Andie’s corner of the room, I stood looking at her tiny toes, the rise and fall of
her miniature chest, and her little palm curled into her neck. Looking down at that tape across her eyes and the lights glaring down at her jaundiced body, I felt a wave of emotion swell up from a place I hadn’t known existed. I began to sob uncontrollably. “I can’t leave her here,” I said over and over again. “I can’t leave my baby behind.”

Lesson 7: While it is universally known that breast milk is best for preemies – many moms struggle – through no fault of their own – to produce the liquid gold preemies so desperately need.

While I hungered for the opportunity to provide nourishment for my sick baby – -the pumping schedule was exhausting! I secretly daydreamed about bludgeoning the breast pump with a sledgehammer!

For weeks, I spent lonely hours hidden behind that locked door, with two suction cups attached to my impotent breasts. The room seemed to grow smaller and smaller, and I began to fear the pump would chase me out of there, laughing and jeering, calling me a failure of a mother.

Lesson 8: The frantic pace of having a baby in the NICU – especially if you have another child at home or have to return to work – is mind numbing.

In a way – this serves as a protection mechanism from our grief. We have to keep moving for fear of having to truly feel.

If I stopped to think or possibly feel, I was afraid I’d never start again. I’d taken that British doctor’s advice, I wasn’t on a roller coaster anymore. I was riding the merry-go-round, but
at a mind-numbing speed. Life felt like a race. Every morning the checkered flag waved, and I was off.

Lesson 9: While we want to be strong and put on a brave face – not admit – even to ourselves our weaknesses and need for support, allowing others to help us is a gift to them as well as ourselves.

“We want to thank you for sharing your experience with us, for being so open and allowing us to help.”

I was speechless. She said they’d grown as a family by offering their support and being part of Andie’s experience. In that moment of grace, I was both stunned and perplexed;
my notion of giving and receiving turned on its head.

Lesson 10: Practice self-care to heal and stay strong.

Just as the flight attendant reminds us to secure our own oxygen mask before assisting a child– during a long NICU journey it is critical that we care for ourselves if we hope to be able to emotionally and physically care for our medically fragile child. Sometimes it is hard to meet even or most basic needs–but if we do not practice self-renewal, we will be ill prepared for life after the NICU.

At home, I began nurturing myself more. I ate healthier foods, took naps, read books, and listened to music. Just little bits here and there, but enough to start refilling my dry, thirsty well. I was turning inward, not answering the phone as much, and discouraging visitors. I needed quiet, uninterrupted peace.

Excerpts from Preemie by Kasey Mathews. Published by Hatherleigh Press. Distributed by Random House. Reprinted with permission.

Kelli Kelley About Kelli Kelley

Founder, Hand to Hold - Kelli D. Kelley (TX) is the mother of two preemies – Jackson born at 24 weeks in 2000 and Lauren born at 34 weeks in 2003. She is the founder of Hand to Hold, a 501(c)(3) nonprofit dedicated providing support and navigation resources to families who had a preemie, who had a child in the NICU or with a special healthcare need, or who experienced loss. She has experienced the emotional fallout and isolation that having preemies often causes. As a direct result, Kelli has dedicated her life to offering hope and sanctuary to all parents who have had similar journeys. Contact her via email.

Comments

  1. Lesson 5 is where I think HIPAA hurts the patient (and their families) because you are forced to stay isolated. With Caleb’s rare disease no one would tell us of other families in the area, though they said that they saw 1 or 2 of these babies a year. At 5 months we found another family, less than 5 minutes away from us. How wonderful it would have been to have known them in NICU when we needed help desperately. We’re also close with another family who was in the NICU at the same time as us, we just didn’t know it then.

    • Bea, I couldn’t agree more (obviously b/c I wrote about it!). What a huge difference that connection would have made for you. So glad you did ultimately connect. XO

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