With all of the other challenges that come with adding a preemie to a family, parents of the very earliest premature babies often find they have to learn another language. It’s the language of medicine, and there’s no escaping the fact that to be deeply involved in the care of a preemie one has to learn more medical definitions, acronyms, and stats than most.
The information is certainly out there. NICU staff members and volunteers are usually willing to answer questions posed by moms, dads, grandparents, and other visitors. There is a wealth of information online, and more books are being published that focus specifically on extreme early prematurity.
However, mastering this “second language” isn’t easy for every parent. For some moms, dads, and caregivers, being able to focus on the practical aspects of the NICU journey is empowering. The more they know about what has happened and is happening, and even what may happen, the more confident they feel. They want to know more and more, and are grateful whenever they come across information that’s applicable to their micro-preemie’s circumstances.
Other parents of premature babies don’t necessarily find comfort in the inflow of medical, technical, and statistical information that comes with the birth of an extremely premature infant. In fact, all of the terminology and talk of outcomes can feel frightening and contribute to, instead of alleviate, stress. There are many moms and dads in the NICU and beyond who prefer to receive facts on a need to know basis and in plain language that one doesn’t need a medical degree to fully understand.
It should be said that there is no one right or wrong way to care for and support a micro-preemie, whether your family is still in the NICU or long since home. Even parents who find comfort in becoming lay-experts in early prematurity can still become overwhelmed – particularly when they encounter knowledge that is distressing. And moms and dads who prefer to focus on simply being with their babies while the doctors and nurses handle the medical side of prematurity may feel moved to research a particular treatment or piece of equipment, particularly when that equipment may come home with their son or daughter.
Sometimes knowing everything there is to know feels good; sometimes ignorance really is bliss. Our advice? Be open about your tolerance for information with your preemie’s doctors, nurses, specialists, and other caregivers. Let them know how you prefer to receive information, e.g., as needed, when you request it, or all the time, with or without medical jargon. Ask questions when you have them, but if you’d rather not hear about average outcomes and statistics that apply to micro-preemies across the board but not necessarily your baby, feel free to say so.
Try to do this in the NICU and in the years that follow. The more open you are with the care providers who work with your infant, toddler, or child, the more likely it is you will get the information you need and want without finding yourself weighted down by information that gives you neither confidence, nor comfort. On the other hand, if you feel like you’re not getting the answers to your questions, ask again or find an alternate person to ask or resource to consult until you find out what you need to know.
Whatever your information gathering style, you and your family deserve to be informed, to be reassured, and to feel like an important part of your preemie’s care.