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.
posted by pennypiper to Health & Fitness (22 answers total) 4 users marked this as a favorite
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?