Dear Terrified Micro Preemie Mom

First and foremost, congratulations on the birth of your child. It may sound unusual considering the circumstances but you still brought a life into this world. It didn’t go the way you imagined and for that I am so very sorry. No one pictures a tiny micro preemie when they see the positive pregnancy test. I pictured a calm and natural, medicine-free, squatting water birth. Bob Marley serenading my little love out of my birth canal, my husband cheering us on.

A Dangerous Illness

I didn’t consider the word “C-section” until the doctor walked in my room and announced that the operating room is almost ready for us. As a researcher I love to have everything planned out in advance, even reading restaurant menus online days before we plan to go. So to have the most important moment of my life come 15 weeks early via an emergency surgery I knew nothing about had me hyperventilating. It also did nothing to lower the dangerously high blood pressure that put us in the hospital in the first place. My early onset preeclampsia turned into HELLP syndrome and put both our lives at risk.

Like you, I was forced to let go of the dream of the big round basketball belly. Like you, I first laid eyes on my baby covered in wires and tubes and he was by far the smallest person I had ever met. Unfortunately like you, I was discharged from L&D with an empty womb, empty arms and an impossibly broken heart. The emotions come in waves for a reason, to feel it all at once would kill you.

Shock and Guilt

You name a negative, mostly untrue thought and I promise I’ve had it. The shock is powerful, as you try to make sense of something that just makes no damn sense. You know women who don’t follow all the pregnancy rules and they have full term babies. Not you though. I stopped drinking when I tried to conceive and he still came early. Avoided sushi, deli meat and super hot baths and he still came early. I took my vitamins religiously and read a million articles and still gave birth to a micro preemie.

My blood pressure at each visit was textbook perfect until that one day that it wasn’t. I didn’t exercise as much as I should have, I ate more mac n cheese than a pregnancy alone could justify. Did my favorite food betray me?!?! Say it ain’t so! It wasn’t the food, or the skipped gym sessions, or anything I did to cause my organs to start to fail. But tell it to my heart, because the guilt is something I still occasionally struggle with. My body betrayed me, which I could live with, but it felt like my body betrayed him. I know now that it wasn’t my fault and I hope deep down, you know that too.

Anger and Bargaining

When news of my micro preemie miracle spread, well meaning people told me things that made me want to claw their eyes out. I came to understand later that there are no words for a situation like ours, tragic yet miraculous. I cracked jokes, I spoke only optimistically to others even when on the inside I felt paralyzed with fear. Occasionally the stone wall I built around my heart crumbled and it became obvious to those around me that I wasn’t okay. Of course not.

I was furious. A type of fury that only comes with having the thing you’ve protected so fiercely taken from you.  Watching him in his vulnerable moments was unbearable. I begged God to give me all of my child’s suffering. I didn’t just pray, I made deals. Offered up anything I thought the lord wanted in exchange for my baby’s life and health.

The NICU brought me to my knees many times over. The emotional beating was brutal, and when I couldn’t bear one more blow, I’d get 3 more. I thank God for my son’s nurses, they saved me as often as they saved him. Forcing us to go get coffee, reminding us that we hadn’t left his isolette once during their shift. They stood up for us when we needed advocates,cried with us when he accidentally extubated and always reminded us how far we had come.

NICU Roller Coaster

The “NICU roller coaster” analogy never quite described it enough for me. I saw it more like a house with a thousand rooms. In one room you’re tortured by the puppet from the Saw movies, but in the next room it’s Christmas morning surrounded by loved ones opening gifts. I felt the sweetest joys of my life during his good days in the NICU. The first bath on Mothers Day, seeing his first smile. Walking through Hell made our heaven more glorious.

I know we are some of the lucky ones. Spending 138 days in the NICU meant we were there long enough to see some of his tiny neighbors lose their battle to stay alive. I’ve asked why us and why them more times than I can count. I don’t know what it’s like to lose a child, I only know what it’s like to come very dangerously close. So many micro preemie moms had twins where one survived and one didn’t and they soldier on for the survivor. It’s as unimaginable for me to understand how they do it as it is for a full term mom to understand how we survive in such a difficult position.

Survival and Coping

I’ve heard from everyone that loves me that they don’t know how I did it. The answer is very easy, because I have to and they don’t. We and our tiny miracles are warriors, because it is a war that we fight. Our weapons are ventilators, NG tubes and medicine. Like soldiers, we shut off sections of our brains and hearts as needed to complete the mission. Like soldiers, we experience PTSD flashbacks to the moments when we had the least control, the ones that brought us to our knees, that made us ask if we could keep going.

For me it’s a time that he accidentally extubated. I remember every agonizing moment with crystal clarity.  After the worst was over, the soldier mentality kicked in. We met with the attending doctor and respiratory therapist to come up with ways to make sure it never happened again.I never for one second stopped advocating for my son.

Advocating for your Micro Preemie

As moms we see things that doctors and nurses can miss. If something looks out of place or seems unusual don’t be afraid to let someone know. It is your obligation to ask as many questions as possible, get as much explanation as you need, and remind your team that you are an essential piece of the puzzle. You have the right to request a different nurse to be assigned if you don’t feel comfortable. Your concerns need to be addressed by whoever is in charge: nurse manager, attending doctor, social worker etc. 

Being respectful goes a long way, even when you are ready to strangle someone. You will continue advocating for your micro preemie long after discharge day. If anything you need to be louder and clearer when they’re home because you’re truly in charge. It may seem daunting to think of the future, with terms like cerebral palsy and developmental delays being tossed around. The doctors have to tell you every negative possibility. But each day that passes brings a new opportunity for you and your child to heal, learn and grow. 

Micro preemies are phenomenally resilient, and as long as they are fighting, mommy has to fight too. You have to keep eating, sleeping and taking care of yourself even though it feels like wasted time because your baby needs you clearheaded and optimistic as much as possible. Your voice, your touch, and your attitude matter just as much as the modern medicine saving your child. Never underestimate your power. You didn’t fail, it’s not your fault, and every ounce of energy, positivity and faith you put into your tiny miracle will be repaid in time.

You are a member of a club you never wanted to join and you aren’t the person you were before. A much stronger, braver and more grateful woman is a part of you now. Kisses and cuddles won’t be taken for granted. Scraped knees and vaccines won’t scare you. It is you, terrified teary-eyed micro preemie mom that holds the keys to success. Your life and your child’s life are miracles, so keep fighting, smiling and celebrating the big and small victories that await you.

Your sister warrior,
Sara