I had to share this 🙂

A Different Journey: Reactions to a Premature Birth
Mara Tesler Stein, Psy.D.

Empowering Parents of Preemies: The Alexis Foundation Conference

So many times when I talk to parents, I hear a deep sense of bewilderment in their voices, in the questions that they ask. Their puzzlement at first seems to be a reflection of their attempts to find their way around in their new circumstances. After all, when you have a preemie, you are suddenly thrust into this confusing and overwhelming world — you are disoriented. You are flooded with feelings and drowning in information. As you feel your way about in this unfamiliar and frightening place, your confusion begins to diminish. And yet, if you are still left with a vague (and sometimes, not so vague!) feeling of unease, of something being different about you, you are not alone.
Parents may worry after a year, two years, ten years or twenty, that they have not “gotten over” the traumas and losses of having a premature baby. They may concede that they are more vigilant now. They sometimes find themselves very afraid that something awful will happen to their child. Memories pop up in the most unexpected places. Tears well up without warning. They secretly wonder if they have PTSD or are not moving through the “stages” of grief in the “right” way. They imagine that the premature birth irreparably damaged something in them. In short, they fear that something is terribly wrong with them.

Our appreciation (as a society) for the monumental changes that occur during pregnancy and after childbirth has grown in recent years. Now, instead of primarily encouraging parents to learn about the biological changes that they are going through, we are also talking about the emotional and social transformation that any parent experiences after the birth of a new baby.

Parents who have uncomplicated pregnancies and full-term deliveries have a community of people that they join when they have their babies. More and more, they find the changes that they feel acknowledged and validated. Parents of full-term babies say with a chuckle, “I’ll never be the same again” and most other parents know just what they mean.

None of us will ever be the same again — but a lot of the time, we’re not so sure that anybody knows what we mean. Our journey was distinct. Our transformation took a startling path — perhaps a longer road or one with more twists and turns. We are different now. And the unease we feel, I believe, comes in part from our struggle to figure out who we are now, how we fit in to the world we used to inhabit, and how we want to move forward.

So many times, parents talk about how their babies amaze them. This is regardless of whether your preemie survived — whether you felt your baby move inside you strongly but then didn’t have that chance after delivery; whether you saw your baby struggle with all they had, only to have organs fail; or whether your baby survived to come home and grow up.

“They are so strong,” parents say. “They are such survivors, such fighters.”

I’ll bet that each and every one of you made it through something that would have been unimaginable to you before you survived it. Total bedrest? Magnesium Sulfate? Juggling the needs of older children and unborn ones? Splitting time between competing demands of work, school, home, spouse, and helpless baby in the NICU? Knowing and loving your tiny babies; wishing you could take their place; making unfathomable decisions; truly wishing and hoping while living with not knowing.

Have you given yourself the chance to look back at that time and the time that has passed since then and marvel at yourself? Can you remember who you were before this pregnancy, this child? Take a minute to think about the things that you have learned about yourself. Reflect for a moment on the things that you know now, the things that transformed who you were into the person you are today. I’m certain all of you can detail the steps, small and large, that your preemies took in their own development — have you given yourself the chance to really appreciate your own metamorphosis?

Some of us feel like walking wounded much of the time. Ever vigilant, we wait for the next shoe to drop, and then the next one and the next one. Others may feel more robust now, but still different than before. It’s not just because of being parents to this new baby — but because of how you got there. You have seen something profoundly different. You know things that you didn’t know before, and that many parents out there still don’t know.

It’s because we love as deeply as we do that we struggle so much. We want our children to sail through. We want to spare them any suffering. We want them to have every possible chance to thrive. And as parents, we are faced with the reality that we can’t always shield our children. We cannot take over, take all control and make everything all right. It’s terrifying. And infuriating. And so terribly sad. Most parents gain this in practical experience over the course of a lifetime of parenting. Parents of preemies are in the unique position of facing this reality much, much sooner.

And so we have to figure out how to move forward — bearing these awesome losses and carrying this monumental knowledge. It’s the sort of thing that can paralyze you — and often does, at first. And then we slowly start to think again, to move again, and to trust again. It’s not that you start to believe that the world is always fair or perfect or that “everything will be okay.” But you start to remember the ways in which things are okay, and trust in your own ability to not merely survive, but also to make some sense out of all of this. Maybe you come to some acceptance of the limitations you or your child face. Maybe you search for ways to help other people in your shoes. Maybe you start to actually find value in this journey.

One thing is for certain. You will never be quite the same, again. But I would like to suggest that this journey leaves us altogether wiser, stronger, more tender and more human. And it is the lessons that we learn that we pass to our children.

I can remember in the weeks of my long hospitalization and during the early weeks after my girls were born — struggling with the fact that in the course of one hour, I had gone from being professor/supervisor/therapist, to being helpless; hooked up to an IV and a fetal monitor, and completely disoriented. Above and beyond the shock, my identity, who I was, was hooked into my profession, my confidence in my ability to understand, to tolerate ambiguity (yes, I thought that I was very good at tolerating ambiguity!), and to cope. And there I lay, in a hospital bed — more afraid than I had ever been in my entire life.

I remember being angry that the doctors weren’t treating me like a peer. I remember being frustrated that they wouldn’t (or more likely, couldn’t) answer my never-ending questions. I remember having a terrible time figuring out where to put “Dr. Stein” when Mara was laying in a hospital bed, terrified of losing her babies.

But an interesting thing started to happen. My mixed feelings about actually having these babies started to disappear. My worries about whether I would be a good mom, whether I could put myself aside for them (all typical first-time parent worries, I know, but intense nonetheless) stopped being such concerns. One awful night, as I prayed that the reason I was having trouble breathing was because of a pulmonary embolism (They could treat me, right? I was resilientĂ–) rather than a feared uterine infection (that would mean delivering the twins immediatelyĂ–who knew what they could surviveĂ–), I realized that I would do anything that I could to protect these children. It was like a new part of me was born — myself as “mother.”

Once the twins were born, their first weeks were a total blur. That previously competent, confident “Dr. Stein” was really nowhere to be found. The sobbing woman standing over those warming beds, wishing she could breathe for her babies was unfamiliar. The gradual slipping away of my old self during the hospitalization seemed complete. It was hard to even imagine being the way I had been before. And then something surprising began to happen. I started to “wake up.” But the person I woke up to was not the one who had gone to sleep. Two experiences (one with each of my new daughters) opened the door to the blending of my old self — not quite as it was, and my new self — not yet formed.

The first real sign of it happened on a day when the twins were about ten days old. Layla had an umbilical line that prevented us from holding her. As the days passed, and she stabilized, I started to become concerned (as a child psychologist, I told myself) that she had never been held. The nurses dissuaded me, said that every time she was touched, she desaturated. But I persisted — most of their touching was intrusive (by necessity) and disturbing to her. She needed her mommy to hold her. Was I her mommy? I felt so detachedĂ–but part of me pressed on. Finally, they pulled the line, and sat me down in a rocker, placing Layla in my arms. Both of us took a deep breath. She curled up against me, and I watched her oxygen saturation climb. It was hard not to be smugĂ–

The next sign happened when they were three weeks old. Stable on a small amount of oxygen, Gavriella began to desaturate slightly, but regularly. I became increasingly anxious. I felt a knot in the pit of my stomach. I wanted to know what was wrong, I wanted the doctors to take some action towards determining why this was happening. Everyone seemed quite nonchalant. “It’s just a preemie thing.” they said. It just wasn’t good enough. So for the first time, I pushed. I asked to have our primary attending paged. After some confusion, the attending present agreed to do a chest x-ray. I left the unit for change of shift and when I returned, I was informed that Gavi had some pulmonary edema. “I know.” I said.

Our resident, a new mom herself, came up to me and said, “You’re a mom, you know these things.” But I rejected that idea, initially. “I’m a clinician!” I said. “I know how to go about making a diagnosis — I just don’t have all the medical information to make a diagnosis here!” At the time, I couldn’t accept that there was a part of me that knew, that felt, and was accurate — and that this part was not purely my professional self. I couldn’t believe that there was a competent mom inside of me. And I also couldn’t really believe that the agonizing knot in my stomach that I felt when watching Gavriella’s monitor had anything to do with being competent — with being relevant. What I realize now, looking back, is that these were the first small steps towards integrating who I used to be, and who I am now.

I used to be a professional. I still am, but now I’m a mom. I’m not just any kind of momĂ–I’m a mom who went on this journey and is still surviving, most days!

Take some time and think about the way things used to be — the way you used to be. Think some more about what this experience has given you. The journey is ongoing. The road you are on will never be the same one that you thought you were entering when you imagined parenting this baby. The parent you imagined that you would be is probably somewhat different than how you developed. But this difference does not mean that you are damaged. It does not mean that you have not “recovered” from the premature birth. What it means is that you are transformed. And that’s exactly as it should be.

Night Vision
Suzanne Vega (1986)

By day give thanks

By night beware

Half the world in sweetness

The other in fear

When the darkness takes you

With her hand across your face

Don’t give in too quickly

Find the thing she’s erased

Find the line, find the shape

Through the grain

Find the outline, things will

Tell you their name

The table, the guitar

The empty glass

All will blend together when

Daylight has passed

Find the line, find the shape

Through the grain

Find the outline, things will

Tell you their name

Now I watch you falling into sleep

Watch your fist curl against the sheet

Watch your lips fall open and your eyes

dim

In blind faith

I would shelter you

Keep you in light

But I can only teach you

Night vision

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