I spent the past weekend at a reunion for NICU babies and their families.
Chalk that one up to "Things I never thought as a parent I'd be going to."
Because no one ever expects to have a preemie. That's the thing about pregnancy — you hear "nine months" all the time and yet, so many times, that's not the end result.
Looking back, my wife and I never quite figured out why we hadn't thought more in advance about our twin girls landing in the NICU considering the likelihood.
The neonatal intensive care unit (see, now you know!) is almost standard for multiples because of the likelihood they will be born early, among other factors. Even when my wife was put on bed rest — which is a legal way to methodically drive a person insane — two and a half months ahead of when our girls were supposed to be born, somehow, we never put serious thought into the fact we'd be spending some time in the NICU. (My wife, near the end, did start doing hardcore research and discovered that there's not too much out there to research.)
We knew we didn't want to go there. That much was certain. Not because we specifically knew what would happen or the drawbacks, but if the option was "Take your babies home now" or "Take your babies home eventually after they sleep in a plastic box for awhile" we'd take Option A every time. Who wouldn't?
Our daughters were born April 7. April 7, you might figure out through simple math, is not the first week of June. So at 31 weeks, after weeks of bed rest, it was time. (You can read all about that here.) They weight over 3 pounds 13 ounces each, and despite the NICU stay, were relatively healthy. For them, the NICU stay was mostly about getting bigger and stronger.
A lot of parenting web sites for new moms and dads gloss over what happens when your baby isn't born at an ideal time. They focus a ton on getting ready for the baby. They focus a ton on what to do when the baby is home. Instafather isn't so different — it's more fun to read about dumb things we do as dads, right?
But I don't know how your parenting journey is going to go, and it'd be short-sighted to not give you some insight on something that could dramatically change your family's life.
There's no way we knew that we'd be a NICU family when we first found out my wife was pregnant. Hell, we didn't even know at the time we were having twins, so basically our life's Magic 8 Ball was "Reply hazy try again." And now, the time we spent in the NICU is part of who we are, like we're battle-tested.
I don't say this lightly. The NICU was, outside of an emergency experience with Quinn a short time after, the hardest thing my wife and I have ever had to deal with. It is such a complex concoction of emotions and physical demands. You're exhausted because you don't have down time (that's all spent at the NICU) and you don't sleep great. You're always stressed and worried even on good days.
You let yourself think things are about to turn around and then something happens to pull the rug out from under you. You've got doctors telling you what's best for your baby and you aren't ever exactly sure if they are right because you're so skeptical and jaded at this point. And this is all what can happen within a week, let alone 1, 2, or 3 months.
One of the absolute roughest things was the day my wife was discharged from the hospital. Men, you need to be very aware of this, because it'll likely be your situation, too.
You might think, man, what a good day! Your wife is discharged, she must have been so happy to go home again, especially after being in the hospital for most of a month.
In fact, it was the exact opposite. Because that was the day my wife had to go home while our girls stayed behind. The girls she had spent months holding our two little girls inside her, then a month holding them inside a little bit longer doing everything she could, then giving birth to them just five minutes apart (I will never, ever forget how amazing she was in that moment. Superhero stuff., then seeing those same girls get hooked up to monitors and tubes.
A nurse even pulled me aside the day of my wife's discharge to let me know it was going to be the roughest day of my wife's life. It was. There's no magical answer for that, and I won't pretend otherwise. But it does help to know in advance so you can be mentally prepared for what she is going to have to deal with, because it'll be much more intense than your experience. I was sad to leave my girls behind. My wife was devastated. The NICU is no joke.
What's expected when you're expecting
Sure, everyone hopes their baby will be born on schedule with no complications. You expect things to go along as normal, and most of the time, they do!
Sometimes, for no real reason, that doesn't happen.
That doesn't mean your baby can't be healthy. Or that they won't catch up with full-term babies. It's just... different when you have a preemie.
I had a good reminder when we went to an annual reunion for our hospital's NICU. It's a brilliant idea because all the nurses and even some of the doctors show up to see the babies (and parents) they took care of all those weeks or months.
We saw some familiar faces at the reunion, faces that at one point basically represented family because they were taking care of our babies with as much love and affection as we would. Some of the kids there used to be preemies who at one point in life were hooked up to more wires and monitors than you can count and were now playing on jungle gyms.
One mother I talked with had triplets, now almost 3, that were born at anywhere from a little over a pound to just 12 ounces in size. None of the parents at this event would have thought in advance they'd end up one day at a NICU reunion. But, in a sense, we had all accomplished something together, a common bond that was kinda cool if not bittersweet.
You're thinking "I'd rather not think about this!"
Just hearing about tiny baby weights and preemies might freak you out, like it's contagious.
I get it. If we were expecting, just the thought of having your baby born at a size that's about the length of your thumb to your outstretched pinkie finger might give you a cold shiver up your spine.
I think that's one reason my wife and I didn't talk much about what the NICU would be like. We didn't want to have to think about our girls being born that small and fragile. That's considering the hospital was even nice enough to make sure we got a tour before the girls were born, but it's one of those mental things where you are looking at everything but almost trying not to soak it in because you hope you never have to go.
In hindsight, we ended up getting a tour of a place that we'd essentially call home for 40 days, when Quinn finally came home a week after her sister. It was the best feeling in the world.
All the weeks leading up to that? I won't sugarcoat it. It was emotionally exhausting and physically draining. Having a toddler on top of that made it extremely difficult some days because a NICU isn't a great place for a 2-year-old. You just want your baby to be like all the other babies, and there's no magical way to fix that.
And you get weird combinations of relief and guilt because you see other babies that are worse off, and you're glad at least your kids are doing better but you feel bad for even thinking that. I'm saying all this because anyone who tries to gloss over having a preemie or a sick newborn in the NICU like it's just an inconvenience is not being real with you.
We were fortunate to have incredible staff there to support us, family members who dropped everything to make it work, and work situations that made a bad situation doable.
And even then, man, it was unlike anything I've had to do. There's a reason that it's not unusual for a NICU parent to get PTSD.
That all might sound hopeless. But that's not it. Hopeless means there's no light at the end of the tunnel. In this case, there is. There's a healthy, happy baby who just needed intense care to get started. You can hold onto that each day and it's a powerful reminder of why all this is is happening. I wouldn't have wanted to deal with the NICU, but I'm also sure that we are better parents because of it.
I will always hope you have the smoothest pregnancy possible. But life isn't always smooth. So if you end up the NICU, know that you can get through it. Consider these bits of advice from someone who has gone through it. And if it's your friend who is going through this, read on, because the best thing you can do is empathize and try to understand.
15 things to know about the NICU:
- You can't rush progress. Man, you'll want to. You'll want your baby to grow so fast and breathe better right now and get all of those monitors off. And it just doesn't work like that. A lot of it depends on how early they are; everyone will refer to them by the week they were born, not the due date. We had 31-weekers. It's the thing that all decisions are based off of. We learned early that their release was based on a series of checklists and not necessarily their weight. And some of those checklist items just can't come right this second because that's not how babies progress. Their lungs (probably the most crucial development point) take time to reach the point that they can breathe regularly with no assistance and without lapses (apnea).
- Make good friends with the nurses. They will make or break your experience. Your hospital may have a different arrangement, but ours used teams, so that you'd more or less see the same set of nurses all the time. They get to know your baby and you. They are on your side, and they get how stressed you are. They are going to do the most interaction with your baby, from changing diapers to monitoring their status, while doctors do rounds and provide updated treatment plans. We are really glad we had the chance to sit in on those rounds, and then had amazing nurses who would continue to answer questions or talk us down after we'd get paranoid about something. Oh man, you get paranoid in the NICU.
- Get to know the jargon. You'll hear "A's and B's" a lot. That's apnea and bradys (bradycardia, when the heart slows below normal). In fact, you'll probably hate the word brady by the time you leave, because, with us and others we know, a brady episode, even just one, can be the thing that resets the clock on when your baby can leave. Doctors and nurses heavily monitor A's and B's, and for good reason — you wouldn't want your baby at home without monitors hooked up and having trouble with their heart rate or breathing, because you'd have no way to tell. Do they have at-home monitors? Yes, but they pale in comparison. Other common terms:
- Anemia: Less than the normal number of red blood cells in the blood.
- Bilirubin: A breakdown product of red blood cells, which is bad. This leads to jaundice. Treatment: Phototherapy. Our girls both were treated; they gave them funny-looking foam eyepads and then position the bed underneath a phototherapy light. It doesn't hurt them, but it looks strange!
- Isolette: The plastic, heated container where the baby stays. Keeping warm is extremely important. I had never thought about it before, but we learned that if your baby is struggling to stay warm, they burn calories and that means weight loss. Once they can stay warm without help, they move to a bassinet, or, as I called them, baby buckets.
- High-flow cannula: A breathing aid. Our daughter Hannah started off with a CPAP to help her lungs open/reduce the effort needed to breathe (it goes over the entire nose), then progressed to cannulas and then off completely.
- For a comprehensive glossary, here's a useful resource!
- You are your baby's best advocate. Parents are in the best position to speak up on behalf of their baby. You're not being pushy if you want to know more about what's going on with your baby, whether it's a treatment option or even making sure someone can rock them while you're away. We found nurses to be incredible at meeting our needs, but that only works if we let them know what the needs are. If you feel like something is off, say something.
- You don't have to "do" anything. I know this was a worry for me at the start. What do you DO in the NICU? I saw rows of isolettes and thought that I'd have no clue what would be expected of me and how I could help my daughters. Turns out that was silly. One, especially for dads, you can always do skin-to-skin/kangaroo care! NICU nurses are all about that, because it helps babies regulate their temperature and is great for bonding. Two, you can read to your baby, or hold their hand, or change a (tiny! kind of adorable!) diaper. And three, there's something to be said for being there. You might only have a couple hours a day, if that, because or work or distance. Or maybe you can spend most of the day there. Whatever you can do, it's time well spent. I firmly believe your baby knows you are there and there are a million studies showing that hearing the sound of your voice makes an impact right away. I know guys always want to "do" something, but the thing about the NICU is your baby is the one doing something. They are being incredible and fighting through daily challenges, so this isn't about you accomplishing something as much as it it helping your baby and spouse in any way possible.
- Don't give yourself guilt trips. It's almost impossible to not feel guilty every single time you leave. You feel helpless because you want to be there for your baby but, I mean, you have to go shower or sleep or go to work at some point. You are not doing something wrong. It's OK. There are great people taking care of your baby. Actually, you'll one day miss the fact that when they were born, there was a team offering round-the-clock care.
- Talk with your work in advance. If the NICU seems like a possibility, you should talk with your boss before the baby is born about what might be possible — working from home (or even from the NICU, as I did!), changing your shift around, or taking vacation time. We all know paternity leave in the U.S. is a joke and by that I mean non-existent. So you are somewhat at the mercy of your employer about what they are willing to do to help you be in the NICU as much as you can. You also could decide to save up your vacation time now and use it when the baby comes home, since at that point you won't have the advantage of a nursing staff. But the key is try not to wait until the stress of the NICU has arrived to figure all of this out!
- There will be setbacks. Oh man. If there's one thing to know about the NICU, it's that you will have setbacks. One day, your baby is doing great! Maybe they'll go home sometime soon! The next day or hour or minute, they have a brady or can't get their temperature right or a myriad of other issues, and you're wondering when the end will come. You'll probably notice that the NICU staff will be hesitant to give you a definitive timeline. They aren't doing that to be jerks. They are doing that so you don't get your hopes up. They get out when they get out.
- He/She won't be that small forever. They will grow. I promise. When our girls were 3 pounds, we were trying to imagine how they'd ever be "normal" size, let alone big kids. And that's considering other babies in there weighed a fraction of that. Well, here's the thing. They'd gain a little weight here and there and then they were at 5, 6, 7 pounds and their cheeks would fill out and they'd get a little chubby and you would have to look at a photo to remember how they were at birth. Don't focus on how they are right that second. They'll get bigger.
- You will never wash your hands more than you do for the NICU. Every single time you enter, you're washing your hands thoroughly. Hand sanitizer is everywhere. Germs in the NICU would be really bad. These little fighters don't need to deal with infections on top of everything else. Even a common cold can be a huge problem. Trust us. We know.
- Put off having lots of visitors. This one sucks. It seems everyone else gets to have the typical newborn baby experience with tons of visitors and flowers and passing the baby around and all that good stuff, and your baby is in an isolette and visitors need you there just to enter the room. Right now, the point isn't showing off the baby. The point is for the baby to get bigger and stronger, and every time you have a new person come in, you're creating a bigger possibility the baby will be exposed to something. Do you know what would be better? All those people who want to visit can be potential helpers, because what you REALLY will need are people to do things like walk your dog, grab groceries or a meal, or babysit your other kids. When the baby is finally home, awesome! Visitors galore! But remember that the baby is in an intensive care unit. I'm going to bet that you don't want to have to feel like you need to entertain or fake being happy about everything when you are super stressed.
- It will take forever. It will go by faster than you know. The rough estimate you'll often here with preemies is that they'll get out around their original due date. For us, that meant waiting from April 7 until June, which might as well have been 20 years. Then you start to get into the thick of it and getting through each day, just focused on what your baby needs that day, celebrating the little victories like getting to put clothes on them, reductions in their bradys and so forth, and all of a sudden a month has passed and the end is in sight.
- Not everyone you know will understand what it's like to have a preemie. This isn't a simple hospital stay, and your baby isn't like a full-term baby. This is really heartwrenching, grueling stuff you're dealing with. And from the outside, when all they see is a random photo here and there of the baby, it might be easy for some to think you're just kind waiting around for the baby to come home, and that at least you're getting some rest. Well, that's ridiculous. Not being able to hold your baby, and even then, only with wires attached, is enough to make you want to cry some days. If you hear a friend/family member complain about their full-term baby's crying, you may have to hold back from snapping "WELL AT LEAST YOU CAN HOLD THEM!" Just remember that people have good intentions and it's impossible to really know what you're dealing with. Others might be constantly asking for updates because, well, that's standard with a newborn, except in your case you're in a high-stress situation. You may decide not to share that much until everyone is home, or just do brief updates. Don't feel like you're obligated to be all smiles or go over every detail with anyone. You'll go crazy.
- Nursing is highly encouraged. We had lactation consultants always available to help, and I'm still amazed to this day how great my wife was at being persistent and dedicated to making sure our girls could nurse even when they were so very small. They even had a private pumping room! If your wife is interested in nursing, don't think that a NICU stay means that's off the table. If anything, it's even more on the table because of the link between breast feeding and healthy growth. (If you both aren't considering nursing, they won't force you. You always have a say!)
- You are a good parent. Having the baby early is not your fault. Being in the NICU is not your fault. And being there for your baby? That's making you a good parent before you've even left the hospital.
If you have more questions about the NICU or want help finding resources, please get in touch!