Each year 15 million babies are born preterm. Two years ago, my son was one of them. Theo was born 13 weeks early—less than 24 hours after I went to the ER for what I thought at the time was food poisoning. Turns out, I had actually been profoundly sick with HELLP (hemolysis, elevated liver enzymes and low platelet count), a variant of preeclampsia.
Doctors immediately performed a c-section that would save my life. Theo's, on the other hand, was in grave danger. More than 1 million of the preemies born each year die due to prematurity and, from the moment my son was born, l had no idea whether he'd survive. Literally nothing—not books, not websites, not tender images of enormously pregnant women—prepared me for what I would see, feel, grieve, celebrate. My family and I had to navigate this brand new—and pretty scary world—with basically no guidance.
Caring for a micro-preemie is harder than I could have ever imagined, as was recovering from a birth that looked like none I had ever heard about before. Here are some things I wish someone would have told me so I could have felt a little more normal as a new mom to a micro-preemie, this very underdiscussed kind of birth and newborn stage:
1. Your body will betray you
If you’re lucky, you will have made it far enough into your pregnancy to produce colostrum. Even if you hadn’t given much thought to breastfeeding, lactation nurses will appear by your bedside to help squeeze “liquid gold” into tiny vials to feed your newborn. Your fingers will still be swollen with the 20 pounds of fluid you put on the night before your emergency c-section, making it impossible to use a spoon let alone massage your breasts every three hours. Your partner must collect it for you.
Breastfeeding nipple-to-mouth just isn't an option—at least not for months until you baby is off oxygen and stable. Instead you will settle for an industrial breast pump that is more torture chamber than milk machine. No matter how often you pump, the stress of having a baby in the NICU, the lack of sleep and the trauma your body went through may make it impossible to produce enough food, and you’ll have to consider supplementing with formula or a stranger’s milk.
2. You will be filled with regret
You will second guess every decision you made during the first two trimesters of your pregnancy. That time you ate sushi from your favorite restaurant. The hot Epson salt bath you took to relieve your swelling feet and aching back. The stress of remodeling your kitchen, you'll definitely regret that. Then there was that time you drank hot sauce from the bottle and fulfilled your cravings for homemade Chow Mein noodles. That glass of wine at your friend’s wedding when you were six weeks pregnant. Even though none of these things caused his premature birth, you think that maybe, if you had ignored at least one of these impulses, your son would still be swimming inside of you.
Having a micro-preemie will cause you to covet things you would never have imagined.
3. You will be in denial
The first week your newborn micro-preemie is out of the womb will be the Honeymoon period. It will seem like he is defying all the odds, that he might not even need to be intubated much longer. You will see the fighter in him, the promise of a healthy child even after complications from heart surgery, pneumonia and a collapsed lung. When you get the call from the doctor in the middle of the night that your son’s underdeveloped lungs aren’t working to exhale carbon dioxide, his declining heath will blindside you.
4. You will be angry
You will be angry with your body for not doing its job and providing a safe space for your baby for 40 weeks. You will be furious at your organs for shutting down at 27 weeks. The ER doctor misdiagnosing your chest pain, your regular doctor for being on vacation and rescheduling your routine appointment, your family’s history of preeclampsia will all fill you with rage. You will even have a brief spark of anger toward your premature baby.
5. You will be jealous as hell
Having a micro-preemie will cause you to covet things you would never have imagined. Your hippie friend’s home waterbirth. The pregnancy classes you never finished and all the parents who sat through the birthing videos. Having your water break. A baby shower thrown before your baby is born. Taking a babymoon. Nothing will ever prepare you for that hot, sick feeling that washes over you after you run into a friend who is well into her third trimester.
Holding him for the one to two hours a day is like holding your heart in your hands.
6. You will wait while other babies go home
Most micro-preemies will be discharged shortly after their due date, while your micro-preemie continues his stay for another three to four months as you wait for new lung tissue to grow. Having a healthy baby in the hospital sucks more than anything.
7. You will doubt your parenting skills
Even as your baby defies the odds and graduates from intubation to a CPAP to room air, and the doctors talk about releasing him and sending him home on oxygen and a feeding tube, you will second guess your ability to parent such a small human. The thought of taking him from the safety of a sterile NICU to your house filled with dust bunnies under the bed and dog fur on the couch will fill you with anxiety. As nurses walk you through how to replace a feeding tube and program the machine that will continuously feed him, you will be afraid that you’ll screw it up. And even though the doctors and nurses assure you that he’ll thrive once he is home, you won’t believe them.
8. You will suffer from PTSD
Before your baby is born PTSD is something you only associate with soldiers in war zones or people who have been kidnapped. Even as you experience it, the NICU will not feel traumatic, at least not until you have been discharged and are at home. The first virus your infant picks will send you rushing to Urgent Care, and all the feelings you suppressed in the NICU will come bubbling out. The anniversary of his birth (and due date) will send you in an emotional tailspin. When your son develops vision problems from being on oxygen for so long, his glasses will trigger something you thought you had repressed.
9. You will be filled with awe
The first time two nurses and a respiratory therapist take your son from his incubator and nestle him between your breasts you will cry. At 13 inches and 1 pound, 13 ounces, he is frighteningly tiny. Holding him for the one to two hours a day is like holding your heart in your hands. You won’t have to look at the monitors to see how happy he is to be nestled against your chest as he settles back to sleep. Each time he faces a medical setback and then recovers, you will be reminded at what a miracle he is. And two years later, when he runs down a soccer field, his lungs healthy and strong, you will finally focus beyond his micro-preemie label. He might be small, but he’s no longer fragile.
I know, because Theo, now 2, is a happy and healthy toddler tornado who loves to try new foods and play baseball. At birth, he hadn't been expected to live, yet he defied the odds—even after heart surgery, a collapsed lung, a super bug, pneumonia and more than 200 days in the hospital. Raising him from his very early birth has been harder than I ever imagined, filled with higher highs and lower lows, grief and happiness often at the same time. We're in the clear, at least as much as any other family with a toddler. And as had as it was, it's also the only way I would have ever wanted it.
You will think that, too, some day.
Danielle Dreger is a writer and librarian in Seattle. Her short fiction has appeared in The Driftless Review, The Dime Show Review and 200cc's and her essay "Going the Distance" is in the current issue of The Creative Truth Journal. She is a contributor to Preemie Babies 101, the official blog of The Hand To Hold Organization. Her first YA novel, "Secret Heart," was published in October. Follow her @danielledregerb on Twitter or danielledreger.com.