Want to know what it is like to have a preemie? I'll take you on a journey....
Go back to the beginning - way back. Before you were even pregnant. Go on.... take a breath and immerse yourself for just a couple minutes into this story of what it can really be like.
Imagine you’re a newly expecting mother, one who has dreamed of having a baby for so long. Imagine the positive pregnancy test, the doctor confirming you’re pregnant, and the boundless joy that brings.
Imagine telling your partner, and the giddy excitement you share together over this enormous news.
Imagine telling your family. The happy tears. The bear hugs. The "Congratulations!"
Imagine the hours spent thinking about whether you will have a son or a daughter. About how adorable baby clothes are. About creating a welcoming home for your new baby.
Imagine the conversations between you and your partner about names for the baby and who will change the diapers and who the baby will look like.
All the while, just like every mother, you feel a small sense of worry, knowing you’re responsible for a real, live human being who is wholly dependent upon you.
Picture yourself eating well, because your baby depends on you for nutrition. Picture the things you give up because your baby depends on you to be as healthy as possible.
Imagine those private conversations you have with your baby, sharing sweet stories and words of comfort. Nobody coming between you and your baby. Nobody but you and your little one to hear your whispered hopes and dreams.
Yes, imagine too the morning sickness, the expanding waist and the heartburn. The sleepless nights. You get this, too, because nobody else can be responsible for your baby but you.
Imagine the hours and hours spent anticipating the day your baby will be born. Choosing doctors or midwives, thinking about birth plans, trying to prepare. Mentally. For the momentous time when you meet your child.
Imagine the calendar with months marked off, apps that tell you how big your baby is every week - one week the size of an avocado, the next week a banana.
Imagine feeling those first flutters - a real baby moving around inside you! One who will someday be born and who you’ll hold in your arms. A child who will look into your eyes and one day call you Mommy.
Try to feel it in every fiber of your being. Try to immerse yourself in that love and hope. That bond. There’s nothing quite like it, really.
And then. Imagine, it’s an ordinary day and you’re 25 weeks pregnant. You’ve got 15 long weeks to go. You’ve been feeling your baby move for only a few short weeks, and according to your app the baby is the size of a rutabaga (what is that, anyway?). It will be months before your birthing classes and your baby shower. You're getting ready for your day at work when - imagine you feel a sharp pain.
Oh no. No.
It overtakes you, this searing pain. You can’t do anything to stop it. And you know it’s not a good thing.
Imagine the mental games you’ll play, trying to keep calm and convince yourself everything is fine, you’re just being paranoid. Don't panic. The entire pregnancy has been so good, it's probably nothing.
Imagine hanging up the phone after the nurse at the doctor’s office tells you to go straight to the hospital.
But no, this can’t be right - you don’t have a nursery yet, it’s months away, you barely started wearing maternity clothes… you know a baby the size of a rutabaga isn’t supposed to be born. Not yet. And you’ve done everything right…
Imagine the rising fear. Imagine the nurses bustling around you, poking needles in your veins and strapping bands around your small baby bump, putting oxygen under your nose and asking you to sign papers.
Remember all that joy from before - all those hopes and dreams? Imagine how they deflate. In a moment. Vanish. You are not prepared for this.
Now, you - the only one responsible, the one who shared whispered stories and who did everything you could - you feel utterly useless. You don’t know what to do. You can’t eat anything “right” or stop drinking anything “wrong.” You can’t go to pre-natal yoga or put your feet up and make this all stop.
You are completely helpless.
And when the doctors tell you they must deliver your baby early - way too early - and that it’s the only way your baby has a chance at survival, what can you do?
Imagine that inside your head you’re screaming “NOOOOOOOO!” while on the outside you’re politely signing a consent for a c-section. Imagine the paralysis that takes over when you want to get up and run away, but instead you step into that hospital gown. This last moment before you become a mother not at all what you ever imagined it would be. You’re terrified.
Imagine the way you look around in an inner panic, trying to find the one person among all these strangers who you can trust and feel safe with. Will it be the on-call doctor, whom you’ve never met before? Is it the neonatologist - that preemie doctor who scares you with devastating statistics of survival rates and disabilities? Will it be the labor nurse who is giving you medications and explaining things you don’t even want to hear?
Hopefully you find someone among all of these helpful strangers to rely on. Hopefully your partner is there with you, if you had time in the chaos to reach each other.
And in spite of all this, you do have hope. It’s not the same as before, not by a long shot. When you’re in the cold bright room of the OR, after they’ve put a needle in your spine and you’re strapped on the operating table, surrounded by strangers in masks and blue sterile drapes covering every inch of your body - you still cling to hope.
You hope that when your baby is born you will hear a cry. Even a tiny mewl, anything. They’ve told you that most preemies this age don’t cry, they’re too small and weak. But you hope anyway.
Imagine how your hopes and dreams have utterly shifted. No longer do you hope that your baby has a sweet temperament or cute dimples. You just hope she breathes.
No longer do you dream of holding your newborn baby blissfully in your arms. You just hope she doesn’t die before you can hold her in your arms.
And when your baby is born - “It’s a girl!” and “Congratulations, mama” still ring out in the OR but you hardly hear them because you’re desperate to hear… is she crying? Is she strong enough to let out a cry? Will she live?
That’s only the beginning. It’s not just the baby’s birth which is crushingly traumatic. There are the first few hours, the first few days, wondering if she will survive. There are the first times visiting your baby, in the Neonatal Intensive Care Unit. The first time touching your baby, who looks more alien than human, covered in tubes and wires, reaching tenderly in through incubator portholes. There are the first times you hear those machine alarms ringing, signaling nurses to rush over and save your baby’s life. There are the second and third and fourth times they have to save her life. There are talks of surgeries your baby needs, a baby you haven’t even ever held. There is just. So. Much. Fear. Confusion. Anger. Guilt. Jealousy. Helplessness. Sadness. Worry. Uncertainty.
And …. Love. It’s there. It’s hard to recognize it, when compared to the way you imagined love way back then. Before all this. It’s not cuddle time and milky smiles. It’s just raw, true love. And it’s there. And it grows. Even in the NICU with all its stress and chaos, love grows.
Over the years I’ve known many mothers of premature babies, yet I’ve never been one myself. When I try, for a moment, to put myself in their shoes based on what I’ve seen and stories I’ve heard, it’s pretty overwhelming.
I share this in hopes that a few folks out there might really try to understand prematurity, in particular the birth of extremely premature babies, also known as micropreemies. Because every November - every Prematurity Awareness Month - it's vital we remember that prematurity is so much more than the cute photos and catchy slogans we all share this month. It’s so much harder than anyone can imagine unless they’ve gone through it.
I am constantly amazed at the resilience of micro preemie mothers. I can only imagine how every fiber of their being aches to fix a problem that they can’t. This month I hope we all remember to be extra patient and extra thoughtful with the preemie mothers of the world. They’ve been through the unimaginable and had to pick up the pieces of broken dreams.
I created this "story" after many years working with NICU mothers, but also thanks to the brave women who have shared their stories as well. If you haven't read any of these yet, I highly recommend you do. They are profoundly more articulate and heartfelt, as their stories are real.
Girl in Glass by Deanna Fei
So - what do you think - does this sound familiar? What else should people understand about what it's really like?