I have a pretty disturbed work/play balance in my life. Even when I'm off, I read for work, I talk about work, and I blog about work. My layperson friends are actually enablers of my affliction, because they like (or pretend to like) hearing about my job as much as I like gabbing about it. At any rate, I get a lot of comments along the lines of "It must be very hard to see babies die." In reality, NICU work is hard, but not for the reasons that you might think.
For starters, death is not nearly the worst thing that happens to babies in the neonatal ICU. Make no mistake - sudden deaths are quite difficult. It can be devastating when a resilient preemie is bopping along for weeks and then falls victim to NEC, dying within the same shift that he became symptomatic. But difficult as they are, sudden deaths in the NICU are more rare than TV dramas might have you believe. Most of the time, a NICU death means a sense of peace following a long period of suffering. It means freedom from a protracted assault of painful interventions that were, sadly, probably futile all along. The death is not the hardest part... by any stretch.
What's hard about this job? I'll say it. Sometimes, it's the kids that don't die. It's taking care of the kiddo with a lethal bone disorder who fractures nearly every time we touch him. He doesn't breathe on his own and he never will, but we have technology to do that for him. Diaper changes are excruciatingly painful for him, so we give him pain medication prior to providing even this routine care. Those meds ceased to touch his pain weeks ago, but it's all we have at this point, so why not? I go along with this insanity under the guise of "respecting a family's wishes." I continue the torture for one more shift. But it's not one shift. It's 155 days. And counting.
That is hard.
What else is hard? The judgment calls. We're taking care of this beautiful, growing preemie. It's time for a tube feeding, but something is different this time. The baby's belly is just a little more rounded than I remember it being earlier. It doesn't feel quite as soft now either - or is that just the baby's muscle tension from me annoying her? It's the middle of the night and I'll likely be able to convince the impressionable young resident to do what I want. Do we stop the feeds, get X-rays and collect labs? In the quest not to overlook something ominous, will we delay a baby's feeding progress, unnecessarily alarm her parents, and expose the baby to unneeded tests?
That is hard.
Beyond that though, there's something that may be even harder. Nurses sometimes get trapped between policy and reality. I've got this kiddo with very complex heart defects. We're going to send him to the operating room this morning in an attempt to rearrange some of his anomalous circulatory structures. However, the risks are very high. The policy is that parents cannot hold babies who have this type of arterial line in place. The reality is that this could represent the only - yes, that kind of only - opportunity that Mom has to hold him. Do I feign ignorance of the policy and hope the wrong person doesn't walk in on us? Or do I just let her stand there at his bedside, tearful and clumsily stroking his head, because that is the only way she knows to comfort him?
And that right there... yeah, now that is hard.
I'm a rule breaker, personally -- let the momma hold him.
ReplyDeleteI was a rule breaker too. It is just my personality, I guess. But, yes that is hard to decide. Hardest I think it the person in pain who cannot tell me he does not want me to intervene and his pain increases and I cannot help. The helplessness is probably the worst.
ReplyDeleteI no longer talk just about work. Perhaps get a hobby? Carve ducks or something?
Glad you're back! I also work a level IIIC NICU. We have a separate unit for the feeder growers, so it's all high acuity all the time. I say it's nurse's call for holding with the UAC. I don't, but that's me. Others will. I break other rules though, that's what rules are for, to be broken. If I break a rule I always tell the parents that it's up to the next nurse if they'll bend the rule. Things like letting a mom hold her twins together at the same time. Or letting the sibling see (not touch) the baby when they transfer to the level II NICU. It's up to you and I wouldn't think anything less of you for doing it.
ReplyDeleteAs a mommy who had to stand their and just stare at my tiny baby (who should have been still cooking inside my body-a body that had failed him) I know how heart wrenching it is. My little guy is one of the great success stories but I can't even begin to imagine how bad it would be to have had him die in a surgery without ever having held him. I hope your little one made it through and that momma got to hold him either way. I'm sure you've witnessed it many times, but there is nothing like the rapture of finally getting to hold your baby. That's probably why you mention denying that special time is one of the hardest things to do. As the NICU parent, I never thought about what it must be like on the NICU staff. Thanks for that perspective.
ReplyDelete--What about the little ones who never have a parent or anyone there to visit. The baby next to us never had any visitors. I thought that was pretty sad.
Just to let you know that if he makes it through this, hardest time, your little dude with what sounds like probably osteogenesis imperfecta may actually do okay. When he's a little bigger he'll be easier to handle safely, a Texas (‘condom’) catheter will cut down on those painful diaper changes, biphosphonates will help him to fracture less and he will enjoy periods of being painfree. It's hardest before they understand enough to protect themselves, I wish you could see him in high school with his powerchair and ventilator and aide one day - and yes, there is a real chance that he'll get there. It's not futile, what you're doing now, although I appreciate that it must feel like it.
ReplyDeleteBabies like your little patient have a real future now, and the outstanding supportive care that you and your colleagues provide is the launching-off point for all of that.
Becca,
ReplyDeleteI appreciate the comment. Although almost all of my nursing experience has been with neonates, in a brief tour elsewhere, I was able to take care of a school-aged child with OI who does enjoy a decent quality of life. Initially, I hoped that my patient would be able to experience many of the same things. Because of my own experiences as a pediatric patient, I tend toward the overly optimistic side.
Unfortunately, without getting into too many more particulars, it is clear now that no one involved in his case considers my little man a candidate for bisphosphonates. Most of his providers feel, with his particular disease entities, that he's already outlived expectations.
I think that's a huge frustration that many of us feel at the bedside in the NICU: there are many times where we expend great effort prolonging life, when there isn't always a lot that can be done to address the quality of life.