What's normal, in an abnormal situation? NICU edition.
May 29, 2014 11:47 AM   Subscribe

Help me better understand our NICU experience last year. Our baby was overall healthy (just early), and he's doing great. But as my second pregnancy progresses, I've been thinking about some residual anxiety and discomfort I have that comes up when I think about my son's time in the NICU and how we felt we were treated. Since our odds of ending up there with #2 are increased, just by the fact of #1 being early, I'd like to be prepared just in case. So I'm interested in perspectives/experiences from anyone who's spent some time in a NICU, as a parent, volunteer, employee, whatever.

Basic summary of the situation: 6 week premature rupture of membrane, baby good size for age (5.5lbs), healthy but for lungs not being ready, and some jaundice mid stay, cpap and iv for a bit then mostly focused on getting him off the iv and taking milk by mouth, primarily pumped breast milk (though he had 2 bottles of formula before my supply caught up). Level III NICU at a teaching hospital at a major university in a large city. Layout was large open rooms with all the babies (no private rooms). Two week stay, one or both of us would be at almost every (3hr) feeding (we started skipping one night feed after a week or so to sleep on the encouragement of staff).

Anyway, so I recognize that there are naturally a lot of difficult feelings associated with having a child who needs medical care, over not being able to hold or be with your newborn right after birth, or being able to take him home for an extended period of time. I feel like all of that was very openly acknowledged and processed at the time and it's not what is worrying me. He is okay, and that was and is the important thing.

It's more that we felt like rather than being considered part of our childs support team, we were often just being 'managed' or even judged. Some examples/specifics:

We felt like we were spoon fed information - when we asked what needed to happen before he could come home, we'd be told the next milestone, but (even when we delved) not the whole roadmap. So we'd be told that he needs to eat x ml within y time, but not that he needed to show x weight growth over y days, and no 'events' for x days, etc. I recognize that they couldn't make promises as to the "when", and accept that their vague and often incorrect responses to that were totally reasonable. But we didn't have a clear idea of ALL of the requirements until we were actually walking out the door.

Some elements of care, especially those involving us, seemed to vary widely depending on the nurse he had. One nurse would strongly encourage us to try breastfeeding (or disapprove that we weren't trying) while the next would subtly reprimand us for "tiring him out" by trying to breastfeed at all. And we never knew what we were walking into as he rarely had the same nurse twice.

There also seemed to be very inconsistent messaging about kangaroo care, in literature (pamphlets) it seemed to be encouraged. But again, some nurses seemed to almost discourage it citing 'tiring him out', which may be true but it seemed more nurse dependent than anything.

Finally and perhaps most disturbing, we had a very strong sense that we were being judged as to our fitness as parents, and that part of them giving him the okay to come home was being given a stamp of approval of some kind. Like we had somehow forfeited our status as 'good parents' and we had to somehow re-earn it. We overheard, in rounds, discussions very much in this line with regard to other babies/parents - "the baby is good, but I don't know about the parents". We also had to jump through a number of hoops that I don't think the normal delivery folks had to pass - specifically a series of baby care videos that we were required to watch (which is fine, but they didn't tell us this until too late and it delayed his homecoming another day), and a home health care visit to verify that our home was safe for a child.

I feel like I should say that we did have some amazing nurses, but regardless we tried to be very deferential, grateful and positive with the nurses. The only exception was a break nurse who had spent 30 minutes assigned to our son and then proceeded to (adamantly) give the doctor on rounds completely incorrect information about his feedings since the last round (encouraging the doctor to put him back on tube feeding), thankfully we were there to provide the correct information, and refer him to the actual nurses who had been with him the shift in question.

To some degree none of this is a 'big' deal, if we end up going back we can be more specific about our information needs, and we'll be better prepared for the variations in nursing styles/opinions, etc. But the whole idea that we had lost all rights as parents was deeply disturbing.

So what's the deal? Is this all normal? Is it weird? Were we just overly sensitive? Were we too demanding? Not demanding enough?
posted by pennypiper to Health & Fitness (22 answers total) 7 users marked this as a favorite
This is secondhand, but two friends whose babies were extremely premature (one with serious medical problems causing the prematurity), despite excellent prenatal care, experienced the same thing you did with being judged by medical staff. They were both questioned about taking drugs, having sex with multiple partners, and doing various other unhealthy/illegal things during pregnancy, and felt that many of the nurses were dismissive of their parenting abilities and suspected that they were to blame for their babies needing medical care. Another friend with a premature baby who spent a lot of time in the NICU had a different experience and a very supportive medical staff. All three were in different states.

Comparing their experiences to yours, it seems like it's unfortunately normal for some medical staff to judge parents of babies in the NICU and suspect them of being unfit parents (which probably translates into the inconsistent treatment and feeling "managed"), but it varies from hospital to hospital. I definitely don't think you were overly sensitive or demanding.
posted by chickenmagazine at 12:14 PM on May 29, 2014 [1 favorite]

I had a c section for little llama and found the nurses to be almost completely hideous--untrustworthy, not straightforward, condescending, judgmental -- awful. I could go through the chapter and verse of offenses but it's tedious for everyone. There was only one person we trusted in the hospital and it was the bureaucrat who came up to write up the birth certificate. She seemed perfectly normal and perfectly fine with treating us like normal intelligent people.

I'll never forgive those women for how they ruined that time for my husband and me.

I sent the hospital an angry letter, later, when they solicited me for a donation. They called and apologized and cited specific individuals they had talked to by name, about specific offenses, which made me feel better. The spokeswoman said that sometimes the staff forgets that what is routine or tension filled for them is one of the most important moments in the lives of their patients. To the parents, it's magical. It was a straightforward and honest, no bullshit, apology, and I appreciated it.

It is awful to be in the maw of bureaucracy when you're vulnerable.

But the whole idea that we had lost all rights as parents was deeply disturbing.

If you could spring for it, you might go ahead and talk it over with a lawyer or medical advocate of some sort to find out what is and isn't legit. The implication that there are rules isn't the same thing as having rules or even knowing how to get around them (I left the hospital early with an agreement that a visiting nurse would come to see me, because I hated being there so much--I was supposed to be there another 24 hours but I was increasingly a mess.)

You're in a much, much better position this time -- you've traversed the great part of this territory already and I think you'll be fine. You'll be much more confidant, and your major decisions about parenting and babies have been sorted out already. I'm mainly just adding my voice to the 'yes, that can be a shitty experience' crowd.
posted by A Terrible Llama at 12:27 PM on May 29, 2014 [6 favorites]

This is just my perspective from listening to a person I know who recently spent some time working in a NICU, but I got the impression that they were more concerned about the "fitness" of parents of babies in the NICU because the babies were a) leaving the NICU potentially requiring more complex care than a newborn who hadn't spent time in the NICU, and b) their patients, leaving their care without the ability to advocate for themselves. I absolutely don't doubt that some of the nurses and doctors you encountered could have been better about bringing you onto the team and giving you clear information, and I don't think you were taking things overly personally (particularly considering how stressful and awful this time must have been for you) but I don't think the baby care videos and so forth were personal.
posted by MadamM at 12:33 PM on May 29, 2014 [5 favorites]

I think what you experienced is common, and I don't think you are being oversensitive or that you were the wrong amount of demanding. I also think it's totally unacceptable.

My daughter spent a week in the neo-natal special care unit (one notch less serious than NICU) and my experiences were really similar. Conflicting instructions and advice from nurses and a lack of communication between nurses resulted in my daughter being given an unnecessary nasogastric feeding tube without my consent (because the night nurse didn't have time to spoon feed a crying baby and there were instructions not to bottle feed or wake me). She was also sent for a CT scan and had a whole slew of other invasive procedures done with my being informed--I was handed a sheaf of papers and told they were consent forms I needed to sign for things that had already been done.

I often felt like I was in the way and I was chastised for not covering up while breastfeeding (!!!) and it was all 'round a pretty horrific experience. Even if I hadn't been severely traumatized and extremely sleep deprived from a protracted labour and complicated birth. I wasn't allowed to leave the hospital until I'd had a session with a social worker because I wasn't partnered with my daughter's father.

So, I guess the upside is it's not personal? If I were going to have another child, I would invest in a doula or some other kind of hospital advocate. You have the advantage now of having gone through the experience once, so you have some idea what to expect, but when things get difficult it can be hard to think clearly. In your place, I would write out a long and very detailed list of dos and don'ts and have the paid advocate manage the list. You also have the advantage now of having been a parent for a while. I think for me, part of the problem was that I was so very, very new to the job of mom that I always felt like I had to ask permission for things, and didn't feel very certain about what I was doing. It wasn't always 100% clear to me that I was in charge. Personally, I think nurses and doctors take advantage of that fact because bewildered, pliant parents are just more easily to deal with.

I'm really sorry you had to go through such a terrible experience. I send my best wishes for a much more positive experience for your next baby.
posted by looli at 1:00 PM on May 29, 2014 [3 favorites]

What you experienced was consistent with our NICU stay. At one point, we started referring to it as baby jail because they just wouldn't let us take our baby home.

Basically, there were good nurses and bad nurses (one of whom actually got into a heated argument with my doctor). Once we figured out who the good nurses were, we asked for them, and asked to be moved when necessary. It all pretty much sucked, but try not to take it personally.
posted by snickerdoodle at 1:03 PM on May 29, 2014

I had a similar experience when my daughter was born, and we spent eight days in NICU. Allegedly, the cleaning staff found a bag with pot residue in my bathroom's garbage can, and they made me do multiple drug tests, tried to remove my daughter from my room (one of the nurses stopped them, thankfully), and threatened me with social services. In retrospect, I suspect that there were no drugs, but they saw a young parent and a very small infant (on time, but 5lb2oz at birth, and meconium aspiration) and assumed the worst.

Some of the staff I saw were great, and others were awful. I was told repeatedly both that I should breastfeed her as much as possible and that I shouldn't bother at all and should just stick to bottles. Some nurses thought it was great that I had her in my room and was doing kangaroo care, others told me that I was tiring her out and making things more difficult. It doesn't seem like anyone has consistent policies for this kind of thing, and instead the staff is allowed to follow whatever that individual feels are the best practices.

If you can afford to hire a doula or other birth advocate for yourself, I'd do so immediately. I don't know how much it would help, but at least you'd have someone else on your team in the event that something goes wrong.
posted by MeghanC at 1:04 PM on May 29, 2014

I think it's excellent that you are thinking of these things now as you are expecting #2. Congratulations, and I hope you don't see the inside of the NICU this time around.

I delivered at 32 weeks--I had pre-eclampsia and had been confined for a week before the decision was made to induce. That was 6 years ago! My girl was small for her age when she was born, had a stubborn case of jaundice, and a couple of brain bleeds--all not uncommon for a child born at her gestational age. But there was nothing major; she was a feeder-grower, which meant the 4 weeks she was in NICU she was there to learn how to feed from a bottle and grow to the appropriate weight.

I remember feeling pretty lost at the NICU. I didn't want to be there. I was nervous and anxious about it. It ruined my plans of breastfeeding. There's enough to learn with a new baby, and suddenly I had all these other things to worry about--RSV, is she completing feeds in 30 minutes like she should be, does she have reflux, etc. I just wanted her home!

However--I had a great team behind me. Just as in life, some folks I liked better than others. The NICU nursing staff were very professional and skilled. I observed that a great deal of nursing in NICU is having the ability to teach. Preemies have special circumstances that term babies don't. For instance, I had no idea we would need to supplement her formula with high-calorie nutrition. I had no idea that she should be woken to eat--baby books tell you that it's usually OK to let a sleeping baby skip a feeding. And I had no idea that any energy used past 30 minutes of feeding my preemie would just be wasted. Most of the nurses were fantastic, and I really clicked with one in particular, who had a preemie of her own. I had no other resource; no one else I knew had a preemie, so they became my go-to guides.

The neonatologists were also very good. They laid out the risks and potential problems honestly with me. I felt like although there was a great, vast knowledge deficit between us, the neonatologists never used that to their advantage. Sometimes, you get physicians who seem to enjoy being patronizing to their patients. I didn't feel that way, at all.

My husband and I did have to do a number of things before discharge, which I was not expecting, but it was the hospital's protocol. One, we had to stay the night in the NICU's attached bedroom suite to demonstrate that we would be appropriately able to care for our daughter at home. It was just a dry run, to make sure that we knew that babies wake up a lot at night. (No doy!) Two, once our daughter achieved the minimum carseat weight, she had to stay in her seat with monitors on for 30 or 60 minutes to ensure that she was not blocking her airway. Finally, we also had to watch videos about first aid and infant CPR, which frankly, I think are an excellent idea for any new parent or caregiver. I had excellent pumping support, which I definitely needed. I felt that despite the open nature of the floorplan, like you had, my privacy (and my daughter's) was maintained without compromising her care.

I think the only time I felt discouraged or second-guessed was when I had pumped right after I gave birth and was not yet discharged myself. I produced a measly 1 or 2 mL of milk and gave it to my mother-baby nurse, as instructed by the NICU, for delivery to the NICU. (I was on bed rest, recovering from pre-eclampsia.) She looked at it kind of funny and I am not really sure the milk ever made it down there. I was having a hard enough time with that as it was. I did not need that type of attitude then. I was just doing what I was told to do.

Having an infant who you expect to be delivered at term--and then ending up with a preemie--is an incredibly stressful prospect. Even if you know it's likely that you'll have a preemie, it's still hard to go through, I'd expect. The NICU staff should ensure that both parents and baby are ready to come home and that the home is appropriate, because they don't want a re-admit situation. And sometimes, the reality is that babies are born prematurely because of problems like drug abuse, alcohol abuse, really bad nutrition, etc.

Are you being seen by maternal-fetal medicine? Have you discussed your concerns with your physician? Would it be helpful to have a meeting with the neonatologist and/or research current standards of care? Are you able to switch hospitals, if you find one with a NICU that you like better? Feel free to PM me if you'd like.
posted by FergieBelle at 1:08 PM on May 29, 2014 [2 favorites]

I had a late-term preemie with a three-day NICU stay. He was doing great and never needed feeding/breathing support, but it was hospital policy.

Funny, I had the same experience as FergieBelle in terms of the small volume of milk pumped and having one particular nurse give me the side-eye about trying to get it to my kid. But every other nurse was super supportive - sometimes you just get one who is not so great. Another nurse in the same situation practically threw me a parade for my tiny little pumping volume and fawned all over me about how great it was I could get it to my son, every little bit helped, etc.

The test stuff was common to our NICU as well. We had to watch a CPR video and then demo the technique back. Our nurse, whom I loved, presented it to us as "here's something you need to get out of the way before they'll let you leave, you can watch it whenever you want." We immediately watched the video. After, she put the neutral question to us "When would you like to do the demonstration?" My husband and I simultaneously and resoundingly responded "RIGHT NOW!" She gave us a huge smile and said that was a good sign, adding that sometimes parents get comfortable in the NICU and feel overwhelmed about leaving. I didn't get any judgment from that encounter, but rather the acknowledgment that going from all the support and monitoring in the NICU to being at home with a medically fragile newborn is daunting.

It sounds like you guys are very level-headed and reasonable people. I don't think you did anything wrong and I wish you had a better experience.

I'm home on maternity leave with baby #2 now, and I was anxious the whole pregnancy about repeating a premie outcome, maybe with not as insanely fortunate results. I feel you, mama - hang in there. I didn't believe it would work out til I had my little guy in the recover room with me. Feel free to MeMail me if you need support or want to talk more.
posted by handful of rain at 1:50 PM on May 29, 2014

Hospital in general and NICU specifically are very difficult places to interact with care professionals. What may seem like a little suggestion to them can be perceived as a major rebuke by the parents. The most important thing for my experience was asserting some kind of control in the process (my first was in NICU for 151 days). This got established a few ways. First, I was always there for rounds and I always had a question or two to establish that I understood what was going on (if I did) or so that I could figure out what was happening more. The lead doctor switched every 2 weeks in our hospital, and I remember feeling like I always had to train in the new doctor to make sure (s)he understood that we were intelligent people that deserved straight talk and not to condescend to us, thank you very much.

Second, our hospital had a primary nurse program where nurses could sign up to be the primary on long-term NICU cases. We had four primaries for our kid, and this meant that at least 75% of the time it was going to be one of those four nurses and we knew them and talked to them and could build rapport. Obviously if you're going to be there for a few days this is not applicable.

Third, you have to convince yourself first and then your care providers that you are actually the customer, in a real sense, and that they have to talk to you as such. We had a couple of bad experiences with the lactation consultants, for example, and we complained all the way up the line to the charge nurse, and they were not welcome to come back. This happened for a bad nurse, too.

Last, you need allies in the care staff. So while a couple of these points may sound like we were really aggressively assertive (and maybe we were on some days) we really tried hard to make friends with the nurses, especially our primaries, and let them run interference for us when we got contradictory advice (this is very common) or spotty information, or a test result that we didn't understand, or problems with the discharge instructions (like FergieBelle, we had to go through a series of required courses before we could take our kid home). This worked well and we are friends with our primaries to this day, 8 years later.

The nurses are responsible for almost all of the care your kid will get. The doctors will not be around. So while it may be tempting to complain about problems to the doctors, in my experience this is not usually the best way to ensure a good dynamic with your stay. You need those nurses. So if you have problems with specific nurses, you need to go to the charge nurse and raise problems.

Here's the good news. You have already done this once. You are no longer the n00b in the delivery experience. You can trust yourself a bit more this time and push back if you are not feeling comfortable with what is happening. Remember how much money this costs? That money buys you the right to push back. So do it, if you have problems with how you are being treated. If you have other questions feel free to memail me.
posted by norm at 2:33 PM on May 29, 2014 [5 favorites]

Hi- I'm a high risk antepartum RN. So, if you were having issues prior to delivering your baby and then ended up having a NICU preemie, you could be one of my patients (NICU moms come back to our unit to recover). I work in a metropolitan hospital with a 56-bed Level III NICU. This means that they take care of the smallest micro-preemies. I believe the current earliest gestation survival age is about 22 weeks at this point for our NICU. I also occasionally float to L&D and postpartum.

First and foremost, reading the accounts above - especially A Terrible Llama's or Meghan C's, makes me cringe. Nobody should have to deal with that nonsense or treatment while recovering from a delivery. I'm sorry about that.

I would like to try to answer some of the OP's questions/concerns, if I may. I'll go down the list and see if can cover most stuff. BTW, I'm glad your 'big' little guy is doing great!

Since our odds of ending up there with #2 are increased, just by the fact of #1 being early, I'd like to be prepared just in case.

Has your OB deemed this a high risk pregnancy or are you basing this off your fears from the last delivery? I'm not discounting your concerns at all - but one pre-termer doesn't necessarily mean the next one will be, as well.

But we didn't have a clear idea of ALL of the requirements until we were actually walking out the door.

As you know, by nature of the environment, the NICU is a *lot* to take in. The machines, sick babies, the sounds, etc. It is also a lot of information to absorb very quickly. Many parents don't have the ability to take it all in (and retain it). Hence, the tendency to spoon feed. The best thing you can do is to have a little note book with you at all times. Write down EVERYTHING. Who said what, date/time, names of meds/dosages/procedures/etc. And be very clear that you want everything laid out on the table. The good, the bad, the ugly. No, there is no crystal ball, and timelines aren't concrete. Neither are outcomes. It's most definitely a roller coaster. But if you feel that you and your spouse can deal with that, you need to be up front with your baby's attending neonatologist and social worker and tell them -- look, we want the big picture, and *advocate* for your child.

Some elements of care, especially those involving us, seemed to vary widely depending on the nurse he had.

Here's the thing, as much as it sucks, the NICU RNs are there for the babies. They've got responsibilities that I wouldn't take on in a million years. I know some of them are completely awesome and will talk and bond and help you out. Others will give you the look of death if you go near 'their kids'. But if one of 'their kids' goes bad? They're cool as a cucumber and have it totally together, probably because they've been there forever and a day. The old school ones also didn't have deal with all the 'customer service happy happy' stuff that's been drilled into us, as it is now. I'm not making excuses, and I've absolutely seen (and experienced!!) those attitudes RN to RN firsthand. All I can suggest is to make note of the RNs you really seem to bond with and go to the charge nurse or nurse manager and *say something*. They want to keep their patients happy. They do NOT want their surveys coming back negative. Tell them that you want specific RNs assigned to your baby. Believe me, we all have our preferred patients - and it's much easier to have the same ones, because we know their backgrounds. I've had patients for as long as 14 weeks on our unit. We fight over who gets those patients because they become family. :)

we had a very strong sense that we were being judged as to our fitness as parents, and that part of them giving him the okay to come home was being given a stamp of approval of some kind

This, I'm not sure I can speak to, other than they wanted to make sure you'd be able to handle your baby in the event that he stopped breathing, or became unresponsive. There are many first time parents that even with a 'regular' newborn become overwhelmed. The prospect of a baby that had health issues may take some time and they need to be certain that you are able to accept the challenge. This is confirmed by the videos and the home visit. It really is about the safety of your child. It would be much more concerning if they just handed you your baby after two weeks of non-stop 24hr surveillance and said you're on your own - without any idea on what to do if he stopped breathing, or they didn't know that you had a safe place for him to sleep, or he was going home to a place filled with bugs, or God knows what. Exceptional circumstances for an exceptional baby, kwim?

The only exception was a break nurse who had spent 30 minutes assigned to our son and then proceeded to (adamantly) give the doctor on rounds completely incorrect information

Again, nurse manager! Document this sort of thing. Not just because the information relayed was inaccurate but because you don't want this RN around your baby. Request who you want. Chances are, you can get them. Talk to your RN - they can usually request their assignments.

the whole idea that we had lost all rights as parents

Please, please don't think or believe this!! You don't lose your rights as a parent or patient. Hey, there is (or should be) an entire list of Patient Rights on the wall of your hospital room. Advocate for yourself and your baby. Don't be afraid to speak up. What is the worst thing that can happen? They're going to think you're mean or pushy? So what. You have nothing to lose other than them liking you. You're not there to be liked. You're there to get well and to make sure that your child is going home.

Write down concise and clear, well thought out questions in advance when you have a clear mind. Make sure you have that notebook with your ALL the time. Even when you're going for coffee, or at a stoplight, or in your room late at night. Make a list of stuff you want to look up, because it always happens when you're not near a computer. Make use of the hospital library. Utilize the NICU social worker.

I hope I was able to answer some of your questions, and again, I'm sorry you (and everybody else) had such a crummy experience the first time around. But don't go in to this delivery anticipating the same thing unless your OB has told you something specific.

Feel free to Memail me if you have more questions. Good luck!
posted by dancinglamb at 3:27 PM on May 29, 2014 [7 favorites]

norm totally has it right.
posted by dancinglamb at 3:32 PM on May 29, 2014

great answers so far. As a medical professional I just want to support the points being made about your rights. It's never OK for you to be treated in a condescending way or to purposefully withhold information from you about your child's care. You should feel free to ask direct questions such as "if baby meets the feeding goal, what other goals do we need to reach prior to discharge?"

As a mom, I also want to say that this type of thing can happen even if you don't end up in the NICU. I was plenty irritated by the mixed messages I got about breastfeeding from the regular L&D nurses. If it's not about "tiring the baby out" it'll be something else. Some nurses have more knowledge than others and some have different opinions about the way Things Should Be Done, and so you might get some conflicting info either peripartum or postpartum. If you need to get another opinion just as a lactation consultant or your physician to explain it to you. It's hard to be a patient patient when you've just been through a marathon ordeal with not enough rest and lots of hormones involved - it doesn't leave you a lot of room for empathy with the staff, especially since it's really their job to care for you. But I also encourage you to remember that these are people who do a very difficult job. Not only do they have to deal with a lot of parents who may NOT actually have good parenting skills, and in fact to deal with parents with which the idea of sending a preemie home with them is absolutely terrifying (because of drug/alcohol abuse, potential concerns about violence, or simple lack of medical literacy/ability to comprehend complex preemie needs) - these people also deal with watching babies die and caring for them while they are dying. I also care for the critically ill and dying, but I am grateful that I do not have to deal with the deaths of infants. Even the death of an elderly patient with chronic/terminal illness is hard emotionally. Based on my experience, some staff members develop a bit of a hard outer shell which is like a protection for them against emotional distress. They may seem tough and like you would never catch them falling apart over a patient that did not do well. I can tell you there are people who use this as a defense mechanism/attempt to distance themselves so that they do not burn out from just FEELING the intensity of emotions that one might feel otherwise. Anyway, I guess this is just a long way of saying that when you feel like ICU staff are giving you an attitude, try to have a little mercy on them. They might just be jerks but they might also have just spent an hour consoling grieving new parents. I hope your upcoming L&D experience is joyous and involves as little time in the hospital as possible! Best of luck!
posted by treehorn+bunny at 4:15 PM on May 29, 2014 [2 favorites]

I don't want to discourage more responses, but I just want to thank everyone who has responded already. This is helping me enormously.

It's good to know that this wasn't personal (I mean, we guessed it wasn't, but then you start to worry...) and that others have had some similar experiences. Though I also hate that some of this doesn't seem terribly unusual. And some folks had much worse experiences, or much more difficult NICU stays.

There is lots of great advice, but it seems like the major practical piece that we were missing was the idea of being able to request specific nurses (or request not to have a specific nurse). When we were going in after a shift change we'd have our fingers crossed and be saying to each other "I hope x is his nurse" or occasionally "just not y" but I think we assumed that we'd be viewed as trouble makers if we made any specific requests about staffing. And we were trying really hard not to upset anyone who might be caring for him.

I do think I'll do a little prospective discussion with my OB and maybe see what resource the hospital has to offer. And specifically clarify some of the issues that seemed to have high inter-nurse variability (i.e. nursing and kangaroo care specifically). And then prepare myself to be a little more assertive. Just a little.

As for the hoops, it's not that I thought they were bad, but the contrast between that and my brothers experience a month earlier (what sounded like: "ah, let's make sure you've got the right baby. Okay, all good, see ya!") just contributed to the feeling of having been judged guilty until proven innocent of being a fit parent.

I do think there must be a tendency in our NICU to view parents with some degree of suspicion/doubt, because I can't imagine (other than the preterm birth) what red flags they saw with us. We're just so darn boring and average. But I do think they get a lot of the cases like others have mentioned where some element of maternal agency did lead to their being in the NICU, b/c of the proximity to downtown and their NICU rating. And we (eventually) did realize that there were some babies in some pretty god awful heartbreaking situations. And we less astutely wondered about the parents we never saw visiting their babies. But I guess I was too fragile (upset and sleep deprived) to be able to take in the full nature of the situation for some of them, let alone how that daily tragedy, and the life and death aspect (which frankly I was probably in FULL denial about for self preservation purposes) could effect the individuals working there as well as the overall work culture. Thanks for this perspective treehorn+bunny.

I do feel like we will be better prepared if it happens again. Though knock on wood it won't.

And for some clarification, I'm not deemed high risk for any reason, it's just my understanding that one of the major risk factors for preterm birth is having a previous preterm birth (I'm also on progesterone therapy to help avoid this). I'm not obsessing about it or anything, I'm more of the over prepare to alleviate worry sort, so that's what I'm working on. And I think we basically don't have much of a choice about hospitals, my insurance is linked to our university system, so I think if I voluntarily went to another we'd be getting bills instead of EOB's, which with NICU bills is no small thing. And I do think his care was very good, and that's more important than my feelings.

Thank you all for helping me figure this tangle of emotions out!
posted by pennypiper at 5:05 PM on May 29, 2014

Sometimes when there is institutional support, it hasn't filtered through yet. Nurses, and other professionals, are people and some just get set in their ways - reminders can work, using whatever terms the other nurses/documents give you. If they trained in the 'leave 'em be' eras, it can be difficult to make them internalise the kangaroo care processes. Same with breastfeeding, and baby care (I had one nurse ask if I planned to just lay and stare at my baby or could she take her back to the nursery - I just had her! Yes I am planning to stare at this wonderful baby! How is that even a question!).
posted by geek anachronism at 5:15 PM on May 29, 2014 [1 favorite]

I've had two babies in the NICU, two different hospitals. My first baby did not come home, because her labour was mismanaged at a third hospital where afterwards I was treated horribly. (She was transferred; I caught up with her a day later.) My middle child did not end up in the NICU.

There is great advice in this thread. I would say my NICU experiences were better. Had it not been for the compassion and professionalism and expertise of the first team I don't think I would have had any kids after. But there were common elements. The not-leaving and training is standard I think...even with my third I had to do the parent care room night etc. Sometimes information flow was something I had to go after. And occasionally my child had a nurse who reminded me via action she was an expert in tiny silent baby care, not parent care.

Having had a nurse at the start of my parenting journey who was amazingly considerate of my feelings, coached me through pushing beautifully, communicated with my husband so well...and who was entirely incompetent and failed to notice my baby slowly getting asphyxiated on the monitor tracings, I just would mildly say if your baby is in a NICU getting excellent care that is the bottom line. Yes you deserve dignity and respect and care too. You are the mom. But I would not fret so much about that if you can lay it aside. If your baby needs life saving help, it will be there. Yay.
posted by warriorqueen at 5:24 PM on May 29, 2014

They can't give you a checklist because it doesn't really exist. There's broad guidelines, but you could have a baby who met those and still wasn't doing well enough to be released. And I think they want you to focus on this week or today, not the future because it's risky to make statements that can be heard as promises by desperate parents that a baby will do well.

The extra steps are because the babies are usually more fragile. We wound up back in the ER several times and hospitalised in the first three months after the NICU because even though she'd been released, she was still underweight and more vulnerable from the CPAP and everything else so she got sick very easily. Yes, it is a higher standard than regular babies get, but it's statistically sensible.

The nurses vary. They are generally IMO more medically competent than most ward nurses and don't have high turnover - most of the NICU nurses I met had been there a while. They are very calm in a crisis and do this weird mix of sudden high-need nursing and routine babycare and they see babies suffer and suffer and die a lot. Ours was 50 days in a Level III hospital NICU, and we had several empty cribs during then. The nurses were intensely protective of the babies and strict. They didn't particularly care if they hurt your feelings if it meant the ward ran smoothly. I've had kids hospitalised at other ages, and the nurses while competent, were not super-ninja nurses like NICU nurses.

And some nurses really didn't buy into the mess of kangeroo care and direct breastfeeding. They wanted things measured and neat and got annoyed at parents disrupting order. We couldn't request nurses either, but we did complain and have one removed from our roster (she didn't want me to nurse when the baby was on a bubble CPAP, even though it had been okay'd).

I can't find numbers on parental rights termination, but given that drug abuse can cause premature births and the number of foster parents going home from NICUs, I think that you would have more system-identifiable high-risk parents with NICUs so the nurses are (as they are meant to be in part) watching and judging parents for their fitness. I say system identifiable because there are plenty of crap parents who go home from a regular birth, but a premature birth is a red flag for possible drugs and other abuse.

I think it is the removal of agency plus the guilt, valid or not, that a new parent feels when their child is in medical need. You are sidelined and the child's daily care and survival is being controlled by others right at the point where your whole body and brain and social training is to be the primary caregiver. No matter how it happened (most preemies are unknown causes), the result is that you have failed as a parent and your child is in danger that you cannot rescue them from. It is emotionally brutal.

I've met people whose children are teenagers who still get that hollow tone when talking about the NICU time. It's very hard. I had a relatively good experience, and it was so hard.
posted by viggorlijah at 7:48 PM on May 29, 2014

Hey... we had a baby born at 26 weeks and spent 3 months in the Nicu. As everyone said it's totally overwhelming and where we are the lack of resources for parents was stark. Its the toughest time of my life, and only those who go through it have any idea what it's like. We had similar experiences but with the neonatologists as here they have a 24/7 roster of them. One would say our baby was going to die, or have severe life impediments, others were much more cagey and focused only on the next 24 hours.

I wrote a blog about it here ... but most of what you wrote sounds about what happened to us.

There's no web forum for parents with babies in the nicu it's there? Perhaps we could start one!
posted by Admira at 2:30 AM on May 30, 2014 [2 favorites]

Hi! I just wanted to say that YOUR post/questions here actually made ME feel better! Reason: we had a very similar situation.

My baby was born at 35 weeks, but was only 3lbs. She was in the NICU for 17 days. Exact same things happened to us as you; especially difficult for me was the receiving of mixed messages re: breastfeeding versus "tiring her out".

(This was EXTREMELY frustrating and scary, because due to her tiny weight we really needed her to gain, and they kept telling me on one hand to breastfeed and kangaroo care but on the other hand "she's burning precious calories every time you pick her up/hold her/try to breastfeed her". Lots of frustrated tears from this plus everything else.)

Also: I really feel you on the just NOT KNOWING of things -- like even the idea of going to rounds wasn't obvious at first (we figured it out quickly and went every morning afterwards, but why not inform the family right away??) and like being able to refuse a certain nurse. I only did that towards the end of our stay because I had had enough by that point (what broke the camel's back: she actually **took my pumped milk from my hand and made a gesture to throw it in the trash can** because she said the baby had already taken too long to eat. I about lost it and that was the last time we had that nurse.)

Oh and in reference to what Admira said above -- there're actually Facebook groups for NICU families, I'm in one, and while it has its own issues, it actually also really helped me to normalize/realize that I wasn't alone. I've learned a ton from being in it, but as all things, I need to take some things with a grain of salt there. With my experience + what I've learned in the FB group, I'm certainly WAY better prepared if we are unlucky enough to land in the NICU again if we have a baby#2.

Please feel free to MeMail me if you want to talk more about all this! :)
posted by rio at 11:23 AM on May 30, 2014 [1 favorite]

So I'm a hospital-based nurse (but not a NICU or maternal/child health kind of nurse), and my kid was in the NICU for about 12 hours until I checked her out against medical advice.

Here's what I thought of reading your post:

Nurses are all different. Some are more skilled than others, some are lazier than others, some are more judgy or more quick witted or having a bad day or a good day. There are some shitty nurses out there, but mostly there are nurses who will be a better fit for you than others. Anyhow, it sucks when you get a bad nurse, or a nurse who is not a good fit for you, but there are many personalities as there are nurses, so unfortunately, thems the breaks. I concur with every one who recommends you complain if something's not working for you. In my experience, the squeaky wheel very much gets the grease.

I recognize when you're in the NICU, you are being actively judged, and there's a feeling you have to play nice or they will call Child Protective Services or something. I'm sure nightmare scenarios along those lines happen, but the law does allow for some variation in parenting values and style, so realistically, if you have not behaved in an obviously and extremely inappropriate or dangerous manner, you will not be actually punished. There are patients that nurses roll their eyes at, but ultimately, in my experience, there is always another nurse on the same shift who will understand you.

Another factor for the competing advice issue is, you'd probably be shocked to know how much of medicine is subjective in the extreme, based on tradition instead of evidence, or just controversial. For nurses who do this work day in day out, and generally have their own childbirth history, it is probably impossible to objectively evaluate their work. They are largely going on their experience and what the feel, intuitively, to be true. Certainly this comes from their own history and values, where some nurses, at a core level, believe that kangaroo care is right, and most, on a core level, just don't believe it, no matter what the literature states.

Another factor is, the hardest day of your life (as someone here once said I think), is just another Wednesday for the nurse. She is probably a genuinely compassionate person, but she is doing the same thing that she does every day, over and over, and it's really almost impossible to give individualized care, perfectly tailored to your needs, when being a high-functioning nurse requires that you automatize every thing you do.

Finally, babies are scary. Not just to new parents, but to doctors and nurses. We really, really, really don't want any harm to come to a new baby. We know how vulnerable they are, so we tend to be very conservative in caring for them. Medical protocols for a NICU patient weighs the possibility of negative outcomes very strongly, so if the chance of something happening without X intervention is quite small, we will generally go ahead and do that intervention anyway. There's quite a lot in obstetrics (not so sure about postpartum care) that is not necessary, at least according to the research that exists. But we do it because we want to feel we've done all we can to prevent the unimaginable.

Anyhow, I'm sorry about your experience. It sounds quite traumatizing actually, and I imagine you may be working through this for many years.
posted by latkes at 7:20 PM on May 31, 2014 [3 favorites]

A big thing I left out there is there are enormous, enormous pressures on nurses. It's one of the most challenging jobs I can imagine. Besides the emotional toll of the work, there is the knowledge that you can literally kill people by making even seemingly small errors. Or lose your license for failing to do everything correctly.

The politics in most hospitals are generally terrible and stressful and exhausting. The support (emotionally, for continuing education, etc) is little to nil.

Just about every nurse is being asked to do more work, more paperwork, more charting, and constantly having to learn new charting systems, new policies, etc. All while being delightfully supportive to patients, families, coworkers, and their bosses.

None of this is to excuse, but rather to give context to the crappy things nurses sometimes say or do, and why they rush you, and why they want you to behave in a constrained, predictable way, according to what appears to be an arbitrary set of rules.
posted by latkes at 7:28 PM on May 31, 2014 [1 favorite]

Oh man, your experience was so similar to mine! Same gestational age, etc. etc. Same experiences with nurses and inconsistent care and bad attitudes. *I* think you did the best you could last time, and that yes, this is sadly really common. It puts knots in my stomach and tears in my eyes to think that there are so many of us out there.
Given that, though, I have friends who have had way more empowering NICU experiences in different hospitals, especially in NICUs with private rooms for each family. At least here in Canada, a lot seems to hinge on funding, the age/set-up of the NICU, and the ethos of the place. Are you in a location where you have several NICUs to choose from? Is it possible to consider that, in the event that you have another preemie, you could deliver at another hospital with a NICU?
And a side-note -- a few of my friends who had preemies with their firstborn children went on to deliver full-term babies second time around. Hoping it works out for you!
posted by bluebelle at 9:14 PM on May 31, 2014 [1 favorite]

Just wanted to add, we had our second baby just last week and it went full term. We were very careful of course but it all went very smoothly.

Also yes the Nicu is stressful for everyone, doctors, nurses parents and let's not forget babies. I know when I saw my son with tubes, monitors, taking lots of medicine, being poked and prodded... and he would look art me and sometimes I would think "are we doing the right thing here? Is our baby suffering pointlessly?" And I think the stress of that (after seeing other babies in the Nicu suffer and suffer and then pass away) takes a long time to recover from.
posted by Admira at 5:57 AM on June 3, 2014 [1 favorite]

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