When I gave birth to my son, Sam, he was just 24 weeks along and weighed in at one pound twelve ounces, or 749 grams. We spent 95 days with Sam in the NICU at Alta Bates hospital. Every day was a roller coaster. Days could start out good, but deteriorate as the day went on. During our stay, I had to watch Sam have four blood transfusions, get bagged by the nurses three times, have the crash team called to his room once, endure countless apnea and bradycardia events, contract an infection in his blood, have three spinal taps to test for meningitis, have to be re-intubated once, have heart surgery, and have eye surgery. Every day was a challenge, but Sam and I survived.
Below are the key tips I would pass on to any new NICU parent navigating this experience.
You are the most important member of the medical team.
Yes, the neonatologist and the nurses are the ones who can actually practice medicine, but it is you, the parents, that play a vital role in your baby’s (or babies’) care. You are the one that is there every day. You are the one that knows your baby/babies better than anyone else. You are the one that can, and must, speak for your child/children.
Get to know everything about your baby’s medical condition. Learn the medical terms and acronyms. Look at the chart every day. Understand what everything means. All of this will help you be the absolute best advocate for your little one/ones.
I feel like I am an honorary NICU nurse now. I learned a whole new language filled with terms and acronyms like: apnea, bradycardia, CPAP, SiPAP, PDA, ROP, NEC, HA solution, and many, many more. Being able to throw these words around made advocating for my son easier.
Ask for and accept help from anyone willing to give it.
Sometimes, asking for help is the hardest thing a person can do. Get over it. You need the help. You will be at the hospital more than you are at home. A grocery store is a luxury you can’t afford. Running out of aspirin, ask someone to get it for you. Laundry piling up? Get someone to help. This is not the time to think you can do it all. Your job is to be there for your preemie(s). The people around you- it’s their job to be there for you.
My network was amazing. We had dinner delivered every other night. Groceries would just show up on our front porch. Our five-year-old had more playdate and sleep-over options than we knew what to do with. I made a decision early on to say “yes” to everything people offered. In doing that, I was never in need of anything.
Allow yourself space (aka don’t get eaten alive by the NICU).
Leaving your preemie in the NICU is really hard. Moving yourself into the NICU, however, isn’t any easier. As important as it is to be present for your baby/babies, it is equally important for you to take a break.
For me, I tried to limit myself to 4-6 hours a day in the NICU. Any more than that would have been soul-crushing. As Sam began breastfeeding, it became harder to stick to this limit, but we were nearing the end of our stay, so it was worth it.
Primary nurses are vital for your NICU stay.
Not every hospital pushes for primary nurses, but you should. Designating a few primary nurses will make all the difference in your preemie(s)’s care. The basic idea behind a primary nurse is continuity of care. If you have the same nurse with your baby/babies day in and day out, they will get to know them and will be able to tell right away if something isn’t right. Picking a primary nurse is more about how YOU get along with the nurse than their skill level. Any nurse working in a NICU is skilled – how their personality matches with yours is key. As important as it is to find nurses you like, if you have a nurse you do not like – tell someone. You should never be made to feel uncomfortable when visiting your baby/babies in the NICU.
We were lucky to have a number of wonderful primary nurses, many of whom we still keep up with almost a year after discharge. Continuity of care helped save our son a number of times from unnecessary intervention: one time he was having lots of breathing issues and the doctor’s wanted to put him back on the ventilator, but his nurse was convinced there was another reason- and she was right, he just needed a smaller feeding tube.
Find an outlet for everything that is in your head.
Having a baby/babies in the NICU is really hard. At the end of each day, you must find a way to release all that has built up inside of you. If crying is what will help, then cry your eyes out. If you are a screamer, find a place to scream, and scream. Maybe baking or knitting is your outlet. Whatever it is, find it, and use it.
For me, writing was my outlet. I wrote every single day I was in the NICU. If I tried to skip a day, I found I could not sleep. There was so much running around my head, that I just had to release it every day or it would consume me.
MELISSA HARRIS is a single mother of two children living in Oakland, Calif., where she was raised. She was on the fast track to being a partner in a mid-sized ad agency when she gave birth to her second child, Sam, and the trajectory of her life changed. Melissa is now a work-from-home account manager for two virtual creative agencies in the Bay Area. In her free time, she drives kids from activities to appointments to playdates, volunteers at the neonatal intensive care unit at Alta Bates Hospital where Sam was born, and helps her congresswoman fight for better health care for all Americans.
For more information, visit Melissa’s website!