So, Your Baby’s in the NICU…
A guide from one parent to another
First, if you’re reading this, I’m sorry. I don’t know your situation, obviously. I don’t know if everything is going to be okay or if this is just the beginning of a long road of challenges ahead. I don’t know if this was expected or unexpected, though certainly I’m sure it wasn’t expected 5, 6, 7, 8, 9 months ago when you pictured what having a newborn baby would be like. This doesn’t match that picture. I get it. It sucks.
And, of course, there are people who would trade places with you in a heartbeat, you know that, people whose babies didn’t make it to the NICU or people who are having trouble having babies in the first place, and you know you’re lucky, you really do, and still it sucks.
Between my 4-year-old (7 weeks in the NICU) and my newborn (8 weeks and counting), that’s 15 weeks so far in the NICU, 15 weeks too many, 15 weeks and all I have is a collection of NICU visitor bracelets I’ve stretched out enough to slip on and off my wrist because who wants to sleep with a hospital bracelet on. Oh, and some advice if you find yourself there too. Here goes:
- Keep your eye on the big picture.
Even in the easiest NICU course, there will be ups and downs. Good days, bad days, setbacks, weight gain, weight loss, moments where you can’t ever imagine taking your baby home. This is normal, expected, try to look past it. If the doctors are happy, try to be happy. Try to focus on what will matter a year from now. Being in the NICU another day, week, month is terrible, absolutely. It’s also not a race. The important thing is how they’re going to ultimately do, not how fast they’re getting there.
2. Beg for the nurses you want
Nurses matter a lot. First, you want consistency of care — you want to insist on getting the same nurses as often as you can, to end up with a handful of nurses who really know your baby, who know what’s normal for him, who know his quirks and his tendencies — and, most important, who know when something is off. You don’t want someone new to have to learn him every day. You don’t want to be the only source of historical knowledge. Second, you want those nurses to be ones you are comfortable with, you trust, you can talk to. Inevitably, some nurses will be better than others, some will have more experience, some will have greater technical skill, some will be more loving toward your baby. You will quickly recognize whose care makes you feel reassured and who makes you nervous. Find out who makes the schedule. Be as annoying as you need to be. Get your baby the nurses you trust.
3. Trust your instincts
It took me a while with my 4-year-old to realize this — but gut feelings are really important. Doctors aren’t perfect, nurses aren’t perfect, data isn’t perfect. I’m not saying you should be dictating treatment plans or refusing necessary interventions. I’m just saying — ask questions. If something feels wrong, make someone explain it to you until it feels right. If you see something — someone forgetting to wash their hands, a tube that’s not in right, a reading on a machine that just seems wrong, a rash on your baby’s skin — say something. Don’t hold it in. If something feels wrong — it might be. You will never regret speaking up.
4. Know yourself
I can’t bear to be there 7 days a week, my wife can’t bear not to be. I’m not saying it doesn’t help to be there — it is imperative to be there when you can, to bond with your baby, to know what’s going on, to show the doctors and nurses you care and you’re paying attention, to hold your baby, to feed your baby, to talk to your baby, to love your baby — but you can only do what you can do. Stay home if you’re sick — please please please, if not just for your baby’s sake then for everyone else’s — but also don’t break from the stress. If you are the parent who can’t bear not to be there, great, go, you’re amazing and don’t listen to someone who says you need a break if a break is just going to make you feel terrible — but I also know that I will break if I don’t get to breathe sometimes, and someone needs to go grocery shopping.
5. Yes, it will sometimes feel like you are all alone
Shoot, this was probably supposed to be positive, wasn’t it? Sorry. But, look, hopefully you have people in your life who are able and willing to help you, in all kinds of ways, and that’s great — but no matter how much help is being offered, sometimes there’s just no kind of help that can actually… help. The stress, the worry will be there no matter what. You’re going to look around at other people, living their lives, going about their normal routines, while you are stuck in this purgatory, commuting day after day to see your baby, not really able to focus on much else, do much else, accomplish much else. You will feel like you are standing still while the rest of the world is still moving. And it will be hard for people who haven’t been through something similar to entirely understand. Accept whatever kinds of help can make things easier, reach out to friends and family, try not to isolate yourself, and know that one day, life will start moving again. I have to imagine that for new parents in any circumstance, life feels like it’s standing still for a while — being trapped at home with a newborn seems isolating in all cases. For you, it’s just a heightened version of that — longer, more fraught, more uncertain. But it gets better, it does. You will not be in the NICU forever, your baby will hopefully not be so fragile forever. There is light at the end of the tunnel.
You can do it. It’s hard but you’ll get there. My best piece of advice — picture the future. Keep focused on the life to come, not the life you’re living as a NICU parent. And treat yourself to an extra dessert if you need it. Good luck.
