They Need to Know: Prematurity Doesn’t End When You Say Goodbye to the NICU

The people in your life may offer you an amazing amount of sympathy and support when you’re in the NICU with your premature baby. After all, it’s easy for them to see that your newborn or infant has needs that are different from those of a full-term baby in a medical setting. Things can change when you make the transition home with your preemie – particularly if you do so without the need for special equipment or medications. Some parents of preemies find that the outpouring of support that sustained them during the long NICU days is no longer there when their babies no longer call the hospital home.

When RSV and flu season keep these moms and dads housebound, they may sense that their family and friends feel they’re being overprotective. Multiple emergency room visits may prompt not empathy, but rather irritation from employers or relatives. Friends with school age children may not be understanding when invitations are declined. Well-meaning grandparents can offer up critical and outdated (oftentimes unwanted) advice about weight gain, milestones, and more.

It’s enough to make parents of preemies turn off their phones and ignore email!

But the fact is that by the time a preemie’s mom and dad welcome them home, they will know more about prematurity than anyone they know. Going through the experience of having a baby in the NICU means getting schooled in the ins and outs of prematurity – and because all of the lessons involve your dearly loved child, they stick.

Your parents, your partner’s parents, your friends, your boss, and your coworkers (not to mention the woman in the checkout line and possibly even that new nurse at your pediatrician’s office) haven’t been through what you’ve been through. Haven’t watched your preemie go through what he or she has gone through. All they sometimes see is the difference between ‘in the hospital’ and ‘released from the hospital’. They don’t understand that the gulf between hospital and home may be a narrow one. They don’t know how susceptible premature infants can be to certain illnesses. About feeding issues, developmental, and so on.

Mostly, they see your baby, who has been declared strong and healthy enough to say goodbye to the NICU. And because they care about you, they may be so excited by the fact that your family is together that they never ask questions about the long-term effects of prematurity. Consequently, they don’t realize you still need support – maybe lots of it. The best thing you can do in that situation is to be up front with people, insofar as you’re comfortable sharing. Ask for help when you need it. Explain that parents and doctors of preemies can operate on an adjusted milestone timeline. Talk openly about the post-NICU prematurity experience and what prematurity will mean for your child.

Will every friend, parent, grandparent, aunt, uncle, boss, and coworker get the message that prematurity doesn’t end at hospital discharge? Of course not. But most will, and the more your relatives, friends, and associates know about your circumstances, the better equipped they will be to be there for you and your family.

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Graham's Foundation

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