Premature birth brings with it, among other things, a new vocabulary, an expanded medical knowledge, and new ways of thinking about health and wellness. There’s a lot to learn, from the seemingly never-ending list of acronyms used in the NICU to protocols for handwashing and staying germ free to the numerous possible outcomes every preemie faces. We’ve talked about information overload in the early NICU days and how so few of us know much about the NICU before we need it, but one thing we haven’t touched on is the information we get inside and outside the hospital. Where it comes from. And whether it’s even right!
Every doctor and nurse in the NICU is different, of course. Some have a tendency to bombard parents of preemies with information, while it can feel like others are holding back and not telling moms and dads the whole story. But it should be said that the medical professionals who are interacting with your preemie every day in the hospital and regularly once your preemie transitions home are the people who know your child almost as well as you do. They see your baby as an individual – not a category or a statistic – and the information they give you will be specific to your family’s situation.
Then there are the friends, relatives, coworkers, acquaintances… and sometimes even strangers who offer up advice and suggestions when they hear about your situation. They may have a cousin who had a premature baby who suffered from a cerebral hemorrhage. Maybe they had a preemie themselves… back in 1950. Or were a preemie! Maybe you’re home with your premature baby and the people around you have all kinds of ideas about how you could care for your baby. Because they read an article or saw a TV show. Parents may want you to approach prematurity differently because “Back in my day…” The point being, as a preemie parent, you’ll have supposedly helpful information heaped upon you from all sides. Don’t let yourself be pressured into doing something you don’t feel is right. When in doubt, ask someone from your child’s medical team.
Finally, there is the Internet – which can be the biggest source of information overload. You hear an unfamiliar term in the NICU and google it. Your pediatrician doesn’t put your fears to rest, so you go hunting for hope. Hope, you may find, especially if you visit the Graham’s Foundation Facebook page. Information relevant to your preemie? It’s hit or miss. The Internet can calm your fears… or put new ones into your heart. Sometimes knowing all the facts isn’t the balm you think it will be, so think carefully before visiting Google.
Ultimately, the amount of information and input you and your family are comfortable with will be determined by you. Some parents of preemies want to know everything. As in, going to the library and reading case studies. Some just want a little hope and the bare minimum of medical jargon. There’s no one right or wrong way to internalize information about your preemie’s condition, but be careful when trusting unsolicited advice and information from people or what you find on the Internet.