Ask any parent who's had a preemie in the neonatal intensive care about their experience, and they'll no doubt say something along the lines of "... but the nurses ... they were incredible." Because NICU nurses are, indeed, incredible. They dedicate their lives to supporting the most medically fragile babies while simultaneously guiding their parents through a life experience that is unimaginably intense. And they do it every single day.
Along the way, neonatal nurses develop considerable wisdom -- both in the manner of practical tips that can help parents navigate the strange, suspended world that is the NICU, as well as broad, big-picture type stuff about parenting and the healing power of love.
Here, in the words of four NICU nurses, are things all parents of preterm babies should know:
No questions are off-limits.
No parent ever expects to have their baby end up in the NICU and once they're there, there is so much new and complex information to process. So remember: "There are never any silly questions," said Megan Presutti, a NICU nurse with Rush University Medical Center in Chicago. "The more you can understand what's happening, the more it will help lessen your fears." Since parents are likely stressed and extremely tired, she urges them to keep a notebook or iPad on hand to jot down questions that come up between rounds.
Melissa Dunleavy, clinical practice leader in the intensive care nursery at the Hospital of the University of Pennsylvania, believes that parents should really think of nurses as their go-to resource when it comes to getting questions answered -- and they should never hold back. "If a physician says something and they don't know what that meant, we can talk about it with them," Dunleavy said. "If they're not getting the answers they need, there's always someone they can ask."
The field is changing fast -- and that's a good thing.
Things in neonatology are constantly evolving, which is why babies who'd have faced terrible odds in the past are now able to survive, and even thrive. But it also means that things change constantly in terms of best practices, technology and research, explained Meg Fulmer, a nurse in the intensive care nursery at the Hospital of the University of Pennsylvania -- and that may make things feel especially overwhelming to parents. "Neonatology is a fairly new practice. It's not like cardiology, which has been around forever and ever," Fulmer said. Again, parents should absolutely feel empowered to ask questions and explore the scientific literature, she said, but they should also be prepared for the fact that things change quickly. "[Parents should] feel encouraged by the progress researchers and doctors and nurses are making to come up with new technologies," Fulmer said.
Your baby needs to feel your touch...
All four of the nurses interviewed for this story made a point to emphasize just how important touch can be. But while parents may ache to hold their small, fragile babies close, they may also feel nervous -- especially early on. "Parents are often so scared to hold the baby in the beginning, because they think, 'What if the breathing tube comes out?'" Dunleavy said. But it's nurses' job to take care of managing and monitoring all the equipment, so you don't have to think about it. Instead, focus on the truly awesome power of skin-to-skin. "When parents hold their babies, you often see their vital signs all become more normalized; their heart rate goes down in a good way," Dunleavy said. "You can see that the baby calms down and for parents, that really is the best part of their day."
...but you must give yourself breaks.
While it might feel impossible to leave your baby for even a minute, let alone for a few hours or overnight, it is essential that you give yourself a break. "We see it so many times -- parents come in and they don't want to leave the bedside. I can't even imagine what that feels like," said Fulmer. "But if [caregivers] don't take care of themselves, they're not going to be focused completely. They're not going to be as strong as they could be." Your baby may be in the NICU for months, and the first couple of weeks are often the most difficult weeks of any parent's life, she said. It's so important to find some way to take care of yourself.
Go ahead and celebrate good days.
"Everyone always talks about [the NICU] being an emotional rollercoaster, and it is," said Presutti. "It's very important for parents to celebrate and savor small milestones." Did your baby gain an ounce or two? Move up to a bigger bottle? Whatever step it is, and however small it may seem, embrace it. It's a big deal. Each of the nurses emphasized that a stay in the NICU has a lot of highs and lows -- a string of good days, followed by a really hard one -- so "savor every one of those positive moments," Presutti said. They'll help buoy you in more difficult moments.
That also means remembering to take photos, said Christie Lawrence, a NICU nurse with Rush University Medical Center in Chicago -- which can be difficult when you're in such a strange environment, and likely as stressed and tired as you've ever been before. "Sometimes when parents are uncertain about the prognosis, they're a little more nervous or guarded, but regardless of the outcome, those are memories you'll want to have," she said.
Try not to compare.
As difficult as it may be, try and ignore what's happening around you. "Sometimes parents compare their baby to the baby across from them," said Dunleavy. "But each baby has their own story and their own course and you can't compare one patient to the next." Just because a baby who was born around the same time as yours gets discharged, or you watch a family celebrating some milestone your baby hasn't reached, does not mean anything is wrong with your own child or that she is somehow falling behind. Remember, your baby's healthcare providers' only goal is to make sure your baby is safe and able to thrive, Dunleavy said. It may take a while, and that's OK.
You did nothing wrong.
Parents with children in the NICU are often filled with guilt and regret, wondering what, if anything, they did to end up in their present situation. But Dunleavy said that in most cases, the causes of preterm birth are complex and totally out of moms' control. "We always stress that there is nothing you did wrong," she said. "Our primary goal -- together -- is to get the baby safe and take care of the baby now." There might be a time when you want to explore what may have contributed to your baby's early arrival, but it's not about assigning blame. So keep your mantra simple, and as the days pass, repeat it as often as you need: I did nothing wrong.
You know your baby best of all.
There are so many people helping your baby in the NICU -- rotating teams of physicians and nurses, not to mention a lot of machines. But that doesn't change the fact that you, as the baby's parent, are the most important person to him, and you already know him better than anyone else. "Recognize how essential you are," Lawrence said. She shared her experience with one mother who mentioned her baby hadn't been moving as much as usual that day. The baby's care team investigated and found out that she was, in fact, developing a serious infection. In that case, it was the mother who picked up on her baby's subtle clues and saved her life.
So make no mistake, you are the number-one expert on your baby, and your baby depends on you.
"Babies do respond to their parents," added Fulmer. "I believe in my heart of hearts that they can feel the power of their parents' love."
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