Advice to NICUs
My wife and I spent seven weeks in the neonatal intensive care unit (NICU) with our 4-year-old, and ten weeks in the NICU with our baby, home just a couple of weeks ago. I am so grateful for the care that both of my sons received, by dedicated, highly competent doctors and nurses. The fact that my sons could each be born weighing less than 3 pounds, unable to breathe on their own, unable to feed, and a few weeks later leave the hospital and come home in the same state as pretty much any other newborn baby is nothing short of a miracle of modern medicine.
That doesn’t diminish — or at least it doesn’t fully diminish — how hard it is to spend weeks in the NICU with your baby. Looking at the big picture, I have only good things to say — my sons are alive and healthy, and my wife and I have survived the experience. Day to day, it was absolutely a struggle — and I think, in some respects, probably more of a struggle than it needed to be. After 17 weeks of experience, in two different NICUs, I have some thoughts on how NICUs can do even better. Here they are:
- More continuity of care.
This is first on my list and should probably be first, second, third, fourth, and fifth. Nothing else even comes close. It is absolutely the case that my children did better on days when the nurses and doctors caring for them knew them, had cared for them before, understood what a “normal day” looked like for them. “He’s having trouble on the monitor — it’s probably because he’s on his back, and he does better on his tummy, so let me turn him and see how he does before we get too concerned,” compared to, “he’s having trouble on the monitor — it could be anything, let’s bump up the oxygen, draw some blood, hold his next feed to rule out infection, and put in a new IV line just in case.”
That is not an exaggeration — the line between “this is okay” and “this is concerning” is so thin for babies this small, and any added knowledge — a nurse who knows that he needs his nose suctioned a certain way to get the most mucus out, or who knows that his oxygen mask hasn’t been fitting right and needs some extra attention, or who saw the diaper rash the day before and can say with confidence that it’s getting better, not worse — is huge. Yes, we want to identify real problems as quickly as possible — of course — but it was very clear to us that overreacting — running more tests than necessary, taking blood when it didn’t need to be taken — can quickly cascade and cause its own setbacks. You take too much blood and suddenly he’s more anemic, and needs intervention. You hold a couple of feeds out of precaution and he doesn’t gain weight that day, and needs more fortifiers. You have the wrong settings on the machine — because none of the people who saw the settings yesterday are there again today —and there’s no forward progress weaning off of the oxygen, and the days continue to tick by.
I know there are structural limitations — nurses generally only work three shifts each week, and doctors aren’t working seven days a week — but there are solutions. Primary nursing — where there are two, three, four nurses who become intimately familiar with your child, and have him when they’re on, as opposed to a constant rotation with new strangers every two or three days — is critical. Not just for the babies but also the parents. We felt so much more reassured when the nurse was someone who knew our baby, and knew us. Who we knew well enough to feel comfortable talking to, and who we trusted enough to rely on his or her judgment and opinion. For us to learn a new nurse — and for that new nurse to learn our baby — was work, and time, and effort. It needs to happen sometimes, sure — but primary nurses should be established early, and strangers should be the exception, not the rule. In one of our two NICU experiences, that was the case. In the other, we had to advocate for it — constantly. We were annoying — emails, phone calls, tracking people down in the unit — because we had to be, or our baby would suffer. We shouldn’t have had to be annoying.
On the physician side, in one of our NICU experiences, the attendings were on for a full month, and on weekends there was one team for both Saturday and Sunday, not two. Was this perfect? No, but it was pretty good — there weren’t many handoffs, and in a month, the attending really does get to know your baby. In our other experience, attendings were on for two weeks, and then weekends were a free-for-all. New people on Saturday, new ones again on Sunday, and then every other week the transition back to Monday was to a fourth new team in four days. From Friday to Monday was a game of telephone. A to B to C to D. That doesn’t serve the patient, and it certainly didn’t make us confident that the people caring for our baby knew anything about him.
A layer on top of this—effective sign-out is so critical, but was also often times lacking in critical information — machine settings, recent progress, a look back at more than just the previous 12-hour shift. We shouldn’t have had to feel like we were the best source of continuity when the nurse or doctor was new — but we did. There were times our baby might have had three or four good days, progress-filled days, and then a day when things didn’t go as well. The big picture was still good, but someone receiving a report of just the past 12 hours wouldn’t necessarily realize that — and then suddenly we’re being told that our baby, who had been doing fine on room air for days, is being bumped up on the oxygen because the nurse didn’t realize he’d ever been on room air, or the goal for the shift was to get him to take one bottle — when he’d been taking every feed by bottle a day earlier. We felt like we had to be there — not that we weren’t going to be there anyway, but it felt critical to his care in a way that made us feel more uncomfortable than we would have liked.
There should be more comprehensive sign-out. There has to be more knowledge passed from person to person. Fewer handoffs help, of course. Familiar providers help, of course. But when there is someone new, that someone has to be given enough information to step right in and provide the same level of care.
2. Treat the patients like people.
They are small, so small. And obviously the medical care is of chief concern — breathing, feeding, temperature control. But it’s hard for me to imagine that there’s no difference between a baby spending his first few weeks of life being attended to as if he’s an object and a baby treated with love and tenderness, in an environment as gentle as it can be given the circumstances. We overheard a doctor asking a nurse about one of her patients by name, “do you have Tom?” The nurse laughed. “How would I know— I don’t know their names!”
I don’t know that she was a bad nurse — though I suspect she probably was, given the response — and certainly I don’t know that her care would be any different whether or not she knew the baby’s name — but putting a name on this object in an incubator might help remind a nurse or doctor that this is a person, not just a simulation, and to maybe treat him with a little more warmth. We truly appreciated the nurses who took an extra moment to talk to our baby, to stroke his hair, to hold him, to tell him what was happening, to treat him like a human being. At best, we could only be at the hospital for part of the day — even less this time around than with our 4-year-old, since now we had a 4-year-old to get home to. There were lots of hours when the nurses were all he had. And we hated the idea that they wouldn’t even bother to learn his name, let alone be willing to spend a minute for an extra cuddle after the diaper change.
It’s not just the human touch from nurses — though I think that’s really important. It’s also the environment. The NICU is — by necessity, I suppose — a noisy, chaotic place. Monitors are constantly beeping, lights are often bright, it is really quite deafening in there at times. One of our visitors commented that it reminded him of a casino.
Must it be this way, just because it always has been?
Can technology help create a more calming, relaxing environment for babies? Or, at least — would it be worth a study (my wife’s idea) to see if a more calming, relaxing environment might be good for the babies, as far as both short-term outcomes (how fast they progress enough to go home) and long-term cognitive and emotional outcomes?
What if the nurses wore headsets linked into the monitors, so they didn’t all have to beep out loud — the nurse could be alerted with the baby’s name and the monitor reading, without every machine having to have its competing beeps. Truth is, it was often too loud in the room to hear a monitor start to go off, especially since there were already three, four, five other monitors beeping too. It wasn’t always noticed instantly, it was just part of the din. Might nursing response time even be improved with a headset system?
Beyond more silence, perhaps some classical music piped in might help the babies, or the background sound of a heartbeat, or some other white noise — anything but the standard casino soundtrack.
And moving beyond noise — quieter lighting?
And, at the risk of sounding too crazy here — how about some books? In one of our NICU experiences, there was a bookshelf with children’s books. So we read — we read to our son almost every day, through the walls of the incubator at first, and then in the open crib. There is so little that it sometimes feels like parents can do for their babies in the NICU — but this felt like something concrete, something real, something… a little bit parental, in a place where you barely feel like parents.
In our other NICU experience, there were no books, and when we suggested a book cart, the idea was greeted with shock and confusion — where would they get the books, where would they keep them, and how would they keep them clean. I am all about keeping things clean in the NICU — we’ll get there, don’t worry — but I honestly never really worried about the books in our other NICU. I just washed my hands after I touched them. It wasn’t like the baby was touching them. And it wasn’t like the books were the only things that weren’t sterile. If we could wipe down our phones — and we did — we could also wipe down books.
3. Give me information.
The babies are the patients, but, in a lot of ways, the parents are too. It is really hard to feel like you have to beg for information — for updates, for a report from the doctor, for a status report — how’s our baby doing, what’s the plan, big-picture, how is everything looking, and what should we expect in the next few days? We tried to be there for rounds, but we couldn’t always make it. I don’t expect them to schedule rounds around a parent’s availability — and I know the doctors are busy with the most acute patients for most of the day — but to have to chase people down for an update is hard.
I’d actually pitch that they could help their own sign-out process and at the same time keep parents better informed with a simple daily report — what if we could read, online or in person, a two-sentence summary, updated a few times a day. “All is status quo, no acute concerns. Gained 20g overnight, feeding is going up by 3 ml/day, SiPap pressures being lowered to 8/6, eye exam at 11am, next blood draw on Tuesday.” That’s pretty much all I wanted to know — should I be worried, what is his weight, is anything happening today. And if I could get that update from home in the middle of the night, even better.
Because they say you can call whenever you want — but, in one of our NICU experiences, we found that we actually couldn’t. There was one phone line. If someone else was on, it went to the general operator and there was no way to get through. And often there wasn’t even anyone sitting at the phone anyway — receptionist on break? — so it would just ring and ring and ring. There were times it took us an hour to get through — and then, when we did, we’d be told the nurse was busy, try back later. The nurse can totally be busy, I understand — but you combine an hour to get through with the nurse being busy, and it was a very frustrating way to spend an hour at night that we could have been sleeping. No one was able to fix this problem — it was no one’s job to do so. Hugely frustrating, even if it didn’t affect patient care at all.
And, bigger picture, it’s not just the status report that we wanted — that we needed. We also, sometimes, wanted to know a little more — to feel like decisions were being made for real cause — are there downsides to another transfusion, for instance — is there a reason you transfuse at this number, and not this other number — is there evidence for why this is what you’re choosing to do, help me understand the risk-benefit calculation you’re making here. And I wanted to feel like it was okay to ask that question — not because I doubted the decision, but because this is my child, and I want to know what risks he’s being exposed to, and why.
At the same time, in some cases I wanted more paternalistic medicine. More than once, we were asked to make a choice — should we try a particular formula, to see if it helps with reflux; should we explore in surgery for a hernia on the opposite side when fixing the one we found? My wife and I were neither equipped to make these choices nor comfortable doing so. You are the experts — tell us what we should do. Tell us why, definitely — but punting a decision to parents, even informed parents, doesn’t ever seem like the right answer in a NICU context. Help me. Hold my hand. Tell me how to make my baby better.
4. Make the NICU slightly less unpleasant to spend hours in.
It’s hard to be a parent in the NICU. Emotionally, of course. But also physically. It’s stressful. We’re wiping down chairs with antiseptic wipes before we sit. We’re wiping down our phones. It’s too noisy to think. It’s too stressful to nap. There are easy things that could make it slightly less intolerable to be involved in our baby’s care. Take care of some basic needs for us. A bathroom that isn’t horrible. Enough chairs, and comfortable enough to sit in for hours and hours, because we have to. In one of our NICUs, there was consistently a shortage of gowns for my wife to wear while pumping milk or for either of us to wear while holding our baby. There was an odd decision to stop providing water bottles to parents. Was that really a necessary cost savings? You know what be an incredibly inexpensive way to make parents feel slightly more welcome in the NICU? Crackers. Throw a basket of those little saltine packets on a table — not because they’re so amazing, but because sometimes you are in the NICU longer than you planned, because something is happening, and you can’t leave. Your baby is having a test, your baby is having a procedure, your baby is having a problem — and you didn’t plan on being there at dinnertime, and you can’t go out and get food, and you can’t even go down to the cafeteria. Water, crackers, that’s all — help me not pass out while I’m worried about my baby.
5. No sick people, please!
This is so easy. There’s nothing scarier in the NICU — as you’re being told that even a tiny infection can kill your baby — than hearing the nurse across the unit having a coughing fit. I actually reported a sick nurse to the nurse manager. I was so incensed — I couldn’t believe there’d be a sick nurse there — and I sent a very angry e-mail. I got a quick response saying that the policy was that nurses should not report to work when ill and it would be handled. I don’t know if it was handled — we actually moved units that day and were four floors up an hour later. But another nurse (not coughing) told us that she wished she could stay home when she was sick — but they don’t get sick days.
There were doctors coughing — no masks. There were parents coughing — no excuse. There are so many unavoidable risks for these babies — these are avoidable risks. No sick people. Don’t make me worry that someone is going to give my baby an avoidable infection that will set him back — or worse. Have a strict policy, enforce that policy, give me peace of mind. Please.
6. Help me transition to home.
Once discharge approaches, it happens pretty quickly. One day, your baby is hooked up to monitors, nurses are supervising everything you do, and the next day… you’re on your own. I’d love a booklet — heck, maybe I should just write the booklet — explaining what you do once you’re home, what your baby’s special needs are, what you need to look for to know if something’s wrong.
We thought — this second time around — to bring in our home thermometer to see if it matched the NICU’s reading, and to make sure we knew what our baby’s “normal” was. We asked — this second time around — how to know when to switch from the preemie bottle nipple to the next level. We asked — this second time around — about doing tummy time, and about keeping our baby on an incline if his reflux is troubling him. We weren’t really told much about fortifying his breast milk, except that we ought to — we pushed to have him try the fortifying formula before we left, but we weren’t told what to do if he couldn’t tolerate it. We weren’t told about particular risks of preemies, how to watch for trouble breathing, when we can use a baby carrier, what the threshold is for a real fever, how to suction his nose, how to transition from bottle-feeding to breastfeeding, or at least how to try…
Some of these are pediatrician questions, sure. And some are questions for Google, perhaps. But for a baby who was so fragile, so recently, it is hard to go home without a NICU nurse in our pocket. A class, a booklet, a handout, a hotline perhaps, would have made us — and probably others in our position to an even greater extent, who didn’t already do this once — feel even more confident and secure leaving the hospital.
This is another easy fix. These all feel like easy fixes. I am so grateful to both of the NICUs where my sons were cared for. The big picture is good. I wanted to write this because the small picture could be better, and maybe it takes an outsider to help the people inside see that. If this was useful to you, please pass it along to the people who can make changes — who can make things better for the next family, and make the NICU experience ever so slightly less awful. It’s awful by necessity, but it can hurt less.
