There’s a reason why I never chose a career in the medical field: I have no interest whatsoever in any of it. Is it interesting? Absolutely. Life saving and rewarding? Of course! Am I thankful for all of those who chose to go into the medical field? YES! However, I knew early on that I was not built for that type of work. Fast forward to now after having a child with a tracheostomy, ventilator, and gastrostomy tube, and I have become more medical than ever.
Living the NICU and PICU life for 6 months I learned a lot. My husband and I gained an entirely new language that has become second nature to us. Although I have been far from ever wanting to work in medicine, I leaned into learning all the new terms, the procedures, and hospital protocols. When you have a NICU baby, you want to understand everything that you possibly can because you have to always be an advocate for your child. This can be overwhelming to say the least especially if you are a person with no medical background like myself. Here are a few things that really helped me when the medical jargon started to feel overwhelming:
- Ask the doctor or nurse to explain it again. I did this so many times. I would always repeat the parts I understood then ask for clarity on the parts I didn’t.
- AFTER and only after having the conversation with your child’s medical team where you have gotten all of your questions answered and asked for further explanation, if you have close friends or family in the medical field, consult them. I stress after the conversation with your child’s medical team because you want to make sure you really understand what the plan/issue is before you speak with your friends/family. I have two close friends who are both pediatricians, and it definitely helped having them to sort of validate everything we were going through. They could also offer further explanation in a way that made even more sense because we are able to just speak as friends.
- Purchase a book. I didn’t do this, but some of my NICU mom friends did. If it makes you feel more armed with information, definitely purchase a book of NICU terms. There are quite a few options out there specifically geared toward NICU parents.
- Google. Most doctors probably won’t want to you to do this, and I only suggest doing it after you have completely understood what the doctor has explained to you. I used Google as more of a last resort when I could remember part of the word or if I just wanted to learn more about a particular thing. I always kept in mind the doctor’s explanation in order to not let myself go down the rabbit hole of potential self-diagnosing. If you choose to Google, just be careful with it.
I think the main idea here is remembering that it’s okay to ask questions and advocate for your baby. Arming myself with information sometimes helped me to feel more comfort within our situation. It helped me accept the idea that my son will always be considered a micro preemie and we must always protect him as such.