A huge thanks to Melissa Harris whom I recognized from college when she began working in my office about five years ago. Now she is a mom of two, one of whom is nicknamed “The Anti-Preemie”. Earlier this week, she alerted me that today is the first World Prematurity Day and offered to write this “NICU Mom Survival Guide” based on what she learned as a NICU “survivor”.
Before we get to her tips, here is Melissa’s story as a video that her hospital produced about her baby’s story. Coincidentally, all five of the rookie babies were born in this hospital too.
In September of 2010, 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 might 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 reinutabed 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 mom (and one tip from my husband to all NICU dads)
1. 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/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/babies 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. 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.
2. Ask for and accept help from anyone willing to give it
Sometimes, asking for help is that 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- its 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 play date 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.
3. You are human- allow yourself space (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.
4. 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.
5. 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. 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 everyday or it would consume me.
For the dads out there, you are the most important member of the support staff. Don’t expect a thanks right now, it will come later.
Your wife is in mama bear mode. She is 100% focused on your baby/babies and is totally unaware of all that you are doing to keep things going. She will, at some point, realize that you are the one that took out the trash, changed the sheets, brought her water and food, and held her hand. It may take her a few months, but she will thank you. Be patient, and know that without you, she would not make it. It is important, however, to remember that this is not just HER preemie(s). You are going through it too- so make sure to take the time to bond with your baby/babies and take care of yourself.
Again, thanks to Melissa for sharing! If you have questions for her, post them here! Did your baby stay in the NICU? What advice do you have for others?