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 — no books, no websites, no 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, a birth and newborn stage that is rarely discussed.
1. Your body will betray you
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 a 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 could 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 into 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.
