Our son was coming, and they couldn’t stop him. It had only been 24 weeks. In the darkened delivery room, someone asked, “Should we try to save him?” Well, yes! I thought desperately. Ten days later, three doctors closed the door behind us to explain brain bleeds, sepsis, meningitis, and probabilities. It wasn’t good.
“Shall we pull the plug?” they asked. Well, no. Of course not! Three months later he was moved to a transitional hospital, and three weeks after that he came home, around his due date. He’s ten, happy, and healthy now.
Although we often hear beautiful stories like this, it’s crucial that we unpack the details so that we can demystify the process for others as they make similar life and death decisions. Happy and healthy might mean that a child lives with (and the parents accept) sensory processing disorder, mild to moderate cerebral palsy, impaired eyesight, or asthma—all potential outcomes due to premature birth. The Neonatal Intensive Care Unit (NICU) gives you the strength for that acceptance. But first, it takes. It takes all you’ve got.
Hopefully, you’ll never see a NICU. But if you do, there are many resources that can provide you with institutional, personal, and community support.
The hospital social worker will help get you organize your child’s health insurance and medical assistance (MA). Children below a certain birth weight automatically qualify for MA; once they catch up in development, they no longer qualify. MA will pay medical, dental, and ophthalmology bills. Take it! In the U.S., your social worker should also point you to Women, Infants, and Children (WIC), a nutritional support program introduced in the 1970s for at-risk kids. These two programs made it possible for one parent to stay home for two years, as medically recommended, while our child outgrew his medical fragility. Participation in these programs also helps keep accurate social statistics about prematurity and community support, which impacts medical priorities and funding initiatives.
Our social worker also listened and helped us weigh our options when the doctors presented us with choices, helped us with our early intervention enrollment, arranged a tour of the transitional hospital, sat in when I felt obligated to make a staff complaint, and put me in touch with a cellist studying the effects of live music in the NICU.
Nurses are the people who sit with you after your bad and your good news. Their work is physically and emotionally grueling, and they are your baby’s primary caregivers in your place. Pamper them, ask them questions, and respect them. We brought them cookies, fruit baskets, and donuts (our diabetic nurse got a healthy alternative).
We learned to parent in the NICU, where washing our hands was watched and timed, and nutritional intake and output were out of our hands. The babies get little positive touch—daily blood draws and weekly eye exams (where the eyeball is moved manually by the doctor) are just the beginning. Although we had to schedule our time around the nurses’ schedules, we felt strongly about providing positive touch with regularity. It was frustrating not to do it on my own schedule, but doctor’s rounds, babies sicker than mine, or a nurse out sick could add strains we didn’t see. I thank nurses when I meet them anywhere.
I see a clear division between nurses, who are in the trenches with the families, and doctors, who hand out heartbreaking diagnoses and make clear the worst-case scenarios. The doctors made me angry; they had to. Their pessimism is legally scripted: they have to tell you every worst possibility. Still, they had the power to move the incubator to a quieter spot, ensure we didn’t get the nurse that we didn’t click with, listen to my staff complaint, and by the end, allowed us to weigh in on processes and treatments. In a teaching hospital, there is a lot of turnover, and I felt I had to get to know (and make myself known to) new doctors every few days. But, as allies, in the end, they respected our final NICU decision to, “Yes, go ahead and do one more brain scan if you must, but we do not want to talk about it; it will not change how we parent this baby.”
We also had the support of NICU families who were further along in their stay. They offered us hope, and their strength was always inspirational. Always. Making friends with a mom living at the hospital while her family was hours away made my daily visits a little more normal—I had a girlfriend who knew just what I was going through. Luckily, she also had a wicked sense of humor. We’ve been friends for over a decade and still get together with kids and husbands at least once a year. Talk to your peers.
Learn to use your personal resources. You need to calibrate your energy to last the months it may take for your infant to recover. Make sure you get in touch with your employer’s human resources representative. When it was time to leave the NICU, the major university where I was employed told me that maternity leave is supposed to be taken to recover your body, and that waiting three months to ask for my maternity leave disqualified me from taking any. I had a great supervisor who worked with me, but make sure you educate yourself about your workplace’s maternity-leave policies.
You’ll also want to take friends to NICU. I initially wanted to keep everything clamped down and under control, but a few folks made their way past my fear and the hospital hand-washing station. We were far from our families and entwined with mostly childless academics, and the few friends who asked to come to the NICU struck me as odd at the time. Now, they stand out as the bravest and strongest of the lot. Having them visit helped make the experience less isolating. My mom and stepmom came and cooked and cleaned and held the baby, and my auntie came and hired a cleaning team to go through right before our son came home from NICU. It was glorious.
In that same vein, take your friends up on their offers. When someone says, “If there’s anything I can do, let me know,” have a list ready. Crazy? No! They will be grateful for the direction. Here’s a list to get you started:
- host a sleepover for your other child
- mow the lawn
- drop off milk, bread, and eggs at home
- water the plants
- care for pets
- attend a meeting in your place and take notes
- bake cookies for the nurses
- take your car in for its oil change
His dad and I went like clockwork to the NICU: he went in the morning, and I went at night. We were lucky because we were in the same city; if you live remotely, ask a friend to:
- drive you
- find out about the Ronald McDonald house or other local housing (March of Dimes may also be a resource for housing)
- make dinner for you
- go hold the baby (contact the NICU to get them permission to get in)
- schedule a speakerphone call to keep you company on your late-night rides home
When it was time to leave the hospital, I did not want to! I was terrified of our healthcare team fading into thin air, leaving me alone with my child. I’d learned the rhythms of the institution and made friends with the nurses and other families. It was scary to let go. But you will have a network of follow-up folks who continue to coach your family along.
We came home with oxygen tanks, heart monitors, and a pulse oximeter, so we had a visiting nurse. Still, I called our pediatrician’s office daily, six days a week, for two weeks. We were also quickly brought into the fold of the early intervention team, a special force of optimists that included a physical therapist, an occupational therapist, a speech pathologist, and a developmental specialist who came to our home on a weekly basis. We returned to the hospital developmental specialist every three months to check on progress. It can be an emotionally grueling process, and it’s important to have your team accompany you.
You also want to pick your pediatrician early. I thought I was really on top of things when I “interviewed” a popular pediatric practice to begin comparison shopping. I didn’t have time for any other interviews! But that practice did rounds in the NICU, which turned out to be important to my son’s treatment. The doctor saw the results of that final brain scan, understood the seriousness of retinopathy when we didn’t, alerted us to the mildness of his asthma, and continues to coach me on letting the kid just be a kid. This doctor continues to have a strong personal investment in our care.
We are grateful to our village. Because of the support we received, our son is kind and curious. He’ll be headed to middle school, and he’s still unstoppable.