When I was pregnant with my son and living on the antenatal unit (for moms with high-risk pregnancies), I was given a tour of the NICU. I went on this tour out of curiosity, knowing my son would not end up there as he was being born via c-section at 37 weeks. I thought the NICU (neonatal intensive care unit) was only for preemies. Not my child.
Boy was I wrong.
Shortly after my son was born he decided to stop breathing. He was quickly whisked away to the NICU to be assessed by a team of highly trained doctors and nurses.
Still recovering from my general anaesthetic, I woke up a few hours later to find out my son was hooked up to the CPAP — a Darth Vader type respiratory device, to help my son breathe. When he was six hours old, I was wheeled on a stretcher to the side of his incubator and was only able to see his toes. No touching allowed.
The next morning I began my 14 day vigil, being glued to the side of his incubator, carefully watching the monitors beeping away his vital signs.
While the early days were a complete daze, I eventually found my footing and figured out the routine of the NICU. It is this routine, and lessons learned, I want to share with you.
- It’s okay to be overwhelmed. Everything about the NICU is intimidating. From the masked medical staff, locked doors, hushed voices and incubators holding the smallest babies you’ve ever seen, it is a lot to take in. Even on your last day, you can still feel as though you are in another world. And that’s because you are. The NICU is a unique area in the hospital, caring for the tinniest patients.
- Ask questions. Repeatedly. You are sleep deprived, emotional and have just been through childbirth. There is no way you can possibly remember all the information being thrown at you. So don’t be afraid to ask a lot of questions and get the medical staff to write down important information for you. Some key questions to ask:
- What time does the doctor/nurse practitioner do their daily rounds? Is it the same time every day or does it vary?
- Are you able to talk to this person during their rounds and ask questions specific to the care of your baby?
- What is the nurse/baby ratio for the nurse caring for your baby? The amount of babies in the nurse’s care will depend on the medical conditions of the babies (very ill babies have a nurse fully dedicated to them).
- When is shift change for the nurses? This is important to know so you can check in with the new nurse at the beginning of his/her shift and learn if there are any updates in your child’s care plan for the next 12 hours.
- Where are the breast pump supplies kept? This includes the breast pump, bottles, sterilization equipment and other supplies.
- Where can you pump? At baby’s bedside (which is ideal as seeing your baby will increase your milk supply)? A quiet room?
- What should you do with your milk after it’s pumped? Usually there is a consistent place to put your milk, with stickers with your baby’s information.
3. Talk to other parents. I know you just want to curl up in a ball right now and be left alone. But trust me. Talking to other parents helps. A lot. I learned so much about life in the NICU by talking to other moms. This included where to store any food people brought me, where to get free coffee (some larger hospitals have stocked kitchens for parents), what questions to ask the nurse and, most importantly, someone to talk to who knew what I was going through. This is a huge benefit as your friends and family likely don’t understand why you won’t leave your baby’s side.
4. Get outside. Even if it’s just for 15 minutes. You need fresh air, a short walk, and a break from the NICU. This is so important for your mental health. These short breaks will also give you the energy to continue. I tried to take a break every four hours.
5. Sleep. Preferably in a real bed. This was a big mistake I made. I thought I needed to be with my son around the clock. It was exhausting. Even though we had a room at the Ronald McDonald House, I never slept more than four hours at a time, afraid if I was away from my son something would happen. Don’t be like me. Try to get at least six hours uninterrupted sleep each night. And yes, you can give the medical staff your cell phone number and tell them to call you if there is a problem.
6. Breathe. Just breathe. Take it day by day. Don’t start thinking too far in advance. Just be in the moment and know you are doing the best you can for your child.
To learn more about patient advocacy visit my website www.learnpatientadvocacy.com.