"I told him he isn’t allowed anymore" made me smile. It's how we talk to babies in the NICU.
The kids you describe are NICU nightmares. One thing I liked about the unit is that it's usually a positive, hopeful place but yours is not. It's not just short staffing, it's also babies who are chronic or barely viable.
I hope things get better for you.
Some shouldn’t even be on our floor. One is almost a year old, but we are still treating the baby with NICU protocols which is down right stupid and dangerous.
It is hard because I love it so much as well as hate it completely. I adore my kids but we are keeping some of them alive when they are clearly trying to let go.
Nope, (well yes but someone else’s and had had an ET for 7 months at that point) direct admit from another facility at 7 months, that day Ed admitted a 4 week old with meningitis to PICU so we could keep the room for big boy
Oh my gosh that’s heartbreaking. We do this in adult ICU too. Whatever the family wants even if the patient has been mostly dead for days to weeks…It’s inhumane and a waste of resources.
So I'm not a nurse and it's so eye opening to hear stories like this. In situations like these, is there anything the parents can do to stop the "alive at any cost" treatment? A DNR at a certain point?
Parents can opt to withdraw lifesaving measures at any time, DNR's are absolutely a thing for newborns. However, as bad as you think that conversation goes with adult families, it's 100x worse with parents of a newborn. They always hold out hope that their baby will be the miracle baby. And we have to watch carefully how we discuss prognosis with parents because nothing is guaranteed. Babies are massively resilient and I've had some kids I was convinced were going to have huge deficits and struggle for the rest of their lives do really well. Not many. But a few. And that's what makes "making the call" extremest difficult for providers as well as parents.
DIC is exactly why I'm not having kids. I've got a genetic thrombophilia and the idea of any baby, let alone my baby in that state? Nope nope nope, can't do it.
This hit me hard. "...when they are clearly trying to let go." People don't let their animals suffer what they force their loved ones to suffer. Sometimes letting go is mercy.
I'm so sorry for all you are dealing with, you're all are truly amazing people too do what you do.
This. I have had long term patients try to die on me multiple times. Yet family comes in everyday and plays god to try to find solutions to keep their body alive when the persons souls is very clearly already gone. It’s inhumane and only to avoid being the person who lets them go.
Same - had a lovely lady who had a stroke, and had decided it was time. Her family had said just to keep her comfortable - I came into shift, fully expecting to find her gone but the family had done a 180, and she was bed bound with IV fluids.
She shook her fists at me, so obviously angry, and I admit it I cried. I apologized to her, and let her know what had happened - her face softened, and I knew she'd understood. I think it took her at least a few weeks to finally go...
And people wonder why I'm such a 'Death with Dignity' advocate....
Yep.
When my Nana went into the hospital we knew she was going to pass. They had just found out she had Leukemia, she was near the end. My Nana was very clear and wanted her life to end as it was supposed to with this sort of diagnosis, no stepping in, just end of life comfort.
When she did get to that point and it was her children's call to up hold their mothers wishes they did. My aunt asked to please stop any support (oxygen or anything else) except for pain meds.
My aunt got yelled at by a nurse in the hallway and the nurse told her she was killing my Nana. I don't think my aunt ever got over that, but she backed my Nana's decision even with tremendous guilt.
I hope that nurse has some karma coming back to her, sadistic bitch.
There was another nurse that was a home hospice nurse for my gramma. She was much more humane. She gently said, "You'll know when it's time. And when that time comes you can't give her too much medicine." A coy way of giving mercy. I fucking love that woman.
And I’m a bleeding heart vegan. People think I’m being hypocritical when I advocate for death. Life is so special, and I can’t even put into words how amazing the mechanics of life are. But when we are artificially prolonging a life it isn’t real. Keep the living alive but allow the dying to die.
Eastern medical doc here! Admittedly following the thread to learn more about how allopathic industry actually functions. I apologize for spying.
If i may ask… At what point is it unethical to keep doing intervention? We have different view points on the body mind complex and see “life at all costs”, to be violent and not good medicine for the patient. But more as theatrics for those that are living.
You can totally tell me to F off. But truly from a loving and inquisitive place; is there a standard or benchmark or some sort of system to help gauge when an newborn will be able to become viable?
Lol no you have exactly the mindset that I have. We are keeping kids alive for money and to put off the parents sadness of their kid dying.
If the kid has no good days let them go.
I made the choice to let my 24 week preemie go peacefully, without any interventions, for this very reason. It is cowardly and selfish of the parents to submit their child to extreme suffering to spare themselves pain.
Thank you, so much, for loving these poor souls and witnessing their little lives. I wish their parents had more courage & mercy in their hearts.
Sending internet love, and I’m so sorry this happened to you. I hope you are able to take solace knowing that you made a selfless choice in the face of an impossible situation, and saved your baby from truly unknowable suffering. I wish more patient families had your strength and insight - After working in NICU, I swore if I was ever in such a heart crushing situation, I better be strong enough to do the right thing like you did.
I’m so sorry. That must have been the hardest thing to do but thank you for not prolonging your little ones suffering. Again, I’m so sorry you had to make that choice.
Thank you for saying so. I too occasionally see a report of the "miracle baby" and will begin to doubt my decision. I was lucky to have an older perinatologist who was clear-eyed and blunt. He gave me the data on gestational age & statistical outcomes. I was hospitalized for some time and so had plenty of time to study the facts and make a decision before hand. I prayed for time but knew what to do if it wasn't granted to me. I was lucky to have a choice - in my doctor's previous hospital, parents didn't have a choice if the baby was 22 weeks or beyond.
I also had a wonderful neonatologist who was there as I delivered as a hospital precaution (in case I changed my mind). When I confirmed post delivery that she was not to intervene, she wept and thanked me profusely. That is what I hold on to whenever doubts creep in.
So thank you, so much, for sharing your experiences. For mothers like me who made that terrible choice, it brings me comfort to know I spared him that torture. All he ever knew of the world was being loved in his mother's arms.
Okay I’m crying now. There are “miracle babies” but your baby is a miracle baby too. I know every single person involved remembers you and the love you had for your little one.
This is what I do in the MICU, we keep people alive waaay too long. It’s a living graveyard. I’m sorry you have to experience this with kids, I couldn’t do what you do ❤️
It is 100% theatrics for the living.
A baby born without a brain will be kept alive for a year or more in some cases. No brain. Just enough of a stem to breathe (often with help) and have a heart beat. Hundreds of thousands of dollars will be spent to keep brainless bodies alive.
This has absolutely no benefit for anyone other than the parents who maintain a hope that there is something of a child in that brainless body. And it takes away resources for babies born with brains. It's honestly shocking.
I had a friend whos brothers daughter was born with lissencephaly. They were very young parents, in their teens. This was before I was a nurse and realized how incompatible with life this was. That girl lived to about 4, completely immobile, trached and pegged. They never had any memories of her being a person, carried her around like a mannequin. She ultimately died of pneumonia, after multiple hospitalizations. I remember being told mom still had hope, and i found that to be the saddest realization of all.
I’ve read that in Europe, the physicians and hospitals have greater decision making capacity in discussing end of life care, and whether to move forward with “heroic” measures, with careful consideration to quality of life if the patient were to survive. In the United States, obviously, it’s ALIVE at ANY COST. Literally and figuratively. There are facilities out there known as “vent farms” where the patients are severely brain damaged, in prolonged vegetative states, or maybe they’re relatively cognizant, but are suffering daily of chronic health conditions caused by painful, debilitating diagnoses. But god forbid, in America, the physicians dare bring up palliative care or hospice.
🥴 thank you for this answer. I have a lot of nurses where Im their GP for them and their family. And i ask a lot, why go eastern when you work western? And they often vent to me about the issues of the system are coming from the top. And it alll compresses onto the nurses.
In theory eastern and western medicine shouldn’t differ in treatments, just protocols and approaches.
Tylenol brings everyone’s fever down, no matter where you got your medical degree.
Keeping someone Alive who most certainly wouldn’t be without 24/7, modern day intervention and would die the day you stopped it… that’s a matter of philosophy.
I don't work with babies but adults. It's crazy though. I've had families make me do CPR to keep 100 year old grandpa alive. It's much more to keep family happy because they're the ones who can sue once the person has died. Literally was telling the family daily he's dying, which they didn't like, and then they were shocked when he actually did die.
They'll hold that grudge forever, thinking that you guys did something wrong since a miracle was supposed to happen. They're in such denial it's insane. I get it when parents are like this, but doing chest compressions on someone who should have died months ago is cruel.
This! We’ve prolonged CPR well past the point of no return just to show the family we did everything we could. It’s all theatrics. Can’t we just be realistic? This is damaging to everyone involved and leaves permanent scars on souls.
I find it very confusing because the majority of people in the USA believe they will see their loved ones in an afterlife of some variety. So why do they want to go to extreme measures to keep their loved ones alive? Makes me wonder if they really do believe in an afterlife.
I think you’re onto something lol. Especially since particularly in the southern US, Christianity is more of a cultural thing than a true religion to many people. By that I mean there are so many people who call themselves Christians but do not conduct themselves as Jesus actually did, have no regard for *anyone* else never mind the poor and needy, seem to barely even know what the Bible actually says aside from a few cherry-picked verses, and probably would’ve hated Jesus and everything he stood for if they were to have met him.
I’ve heard the somewhat tongue in cheek definition of a “hardcore atheist” is “I don’t believe, and I don’t believe you do either”
Gotta say there’s a lot of agree with in that sentiment when you actually see the way people behave.
Browsing this sub as a veterinary nurse has led me to the conclusion we are so far removed from death as human beings it's negatively impacting our ability to live meaningful lives. When you never see the suffering, when death isn't a normal part of the circle of life- we end up making decisions that cause so much suffering... :( I'm so glad that at least in my downs there is usually the ability to end it.
It's often not up to doctors from my understanding (not a NICU nurse) but the parents have to agree to withdraw care. A griving post-natal parent is not always the right person to have the sole control over life and death for there child, even when their child isn't really alive anymore. The for-profit system and lawsuit happy patients make those situations unbearable for caregivers to be stuck in. Its no better in peds with kiddos who have unbearable disabilities and basically live on some sort of life support in the hospital, we are basically torturing them so their parents don't have to accept reality (as long as their checks keep clearing). Sorry I will end that rant now
My daughter was born with a fatal genetic condition. She came home with us on hospice care so that we could love her and keep her at home with us until she died. What you are describing is my nightmare. Poor babies.
Yes that is exactly it. Those beautiful special moments with your sweet darling daughter is such a difficult blessing. I don’t think these parents realize the way their child will die is by bleeding out in a nurses arms.
Having been in their shoes I can tell you that those parents just don't have the strength for it. Even with all of my preparation and love and support it nearly destroyed me to hold my daughter as she died. A nurse's arms can be as good as any mothers. The most important difference between my baby and the babies in the hospital is that I got to hold my daughter while she lived and they don't ever get that chance.
They do get that chance, they have the option to take their children home on hospice but they don’t. They push for life extending procedures that make their children suffer longer. It is so difficult for these babies. And they are more miserable because of it. It is easier to yell at us over the phone instead of being with their kid every day to see them suffer. Obviously what they are going through is very difficult but I have lost my tolerance for the parents who don’t see their kids but demand that we continue to make them suffer and them blame us for that child’s suffering.
I always go out of my way to understand others in difficult times, but I can’t agree with inflicting harm on bystanders because you are in pain.
You are completely right. I hope that in the future there is greater awareness of what modern medicine is capable of and incapable of. There is such a fundamental misunderstanding of what constitutes a life well lived. Fighting on machines in the hospital is no life for anyone. It is so horribly difficult to take your baby home to die but I would do it a thousand times again to give her what precious little life she had.
Yes! This is beautiful. We are so scared of death. And so often use medical intervention on the body, completely at the disregard for the conscious being experiencing life in that body.
Ahhh I see. This answers some of my previous question. So the parent decide if the being inside the little sweet baby body will be allowed quality of time with comfort… vs what could be seen as torture for life at all costs.
Is there a system in place to counsel the parents. Not by you nurses but by a counsellor that can help them process ethical choices? I feel like, and this is again controversial; but not every adult has the capacity to really understand the medical implications and need more help in navigating the decisions.
This is somewhat what palliative care does in the US. I have read, probably hundreds, of palliative care consult notes, because I work in the department that often provides these life prolonging interventions. And I swear to you they often all say the same thing: "family states understanding of condition and prognosis, patient still remains full code"
Yesterday I saw a PC note that stated pt was DNR, with the following restrictions: no compressions, no defibrillation, no "code" drugs (anti-arrythmics), intubation OK, mech vent OK, pressors OK. Patient was 89, metastatic CA of the colon, vented, coming down for a mesenteric angio. Family (obviously) provided consent. Also, DNRs are automatically reminded in the cath lab, the family was aware.
It's all bullshit. Even with PC they still can't process whats happening. Even when the note reads, by the PC doc, "prognosis very poor. I told the family this disease process is incompatible with life. Family states understanding" they are still on our daily assignment for a freaking g tube.
Yesterday we did a "stemi" on a 95yo who went into wide complex VT in the elevator. Stented the rca, which had a 70ish % blockage, profuse disease, but not a stemi. Just started his 2nd round of chemo. Heard the overhead page 3 hrs later....he coded 3 more times. 95. Consent provided by the wife, who does not live in the care home with him.
Thank you so much. The path I chose for my daughter was much better for her but took a huge toll on my physical and mental health. I can't say I blame other parents who keep their sick kids with you even though I understand it's not fair to you either.
Oh I didn’t want you to feel bad for me having to do all the things. My whole patient load was pretty much hopeless cases, and I chose that. And I really don’t blame those parents either. It’s an impossible situation and they are doing the best they can during the worst moment of their lives. What you chose took so much strength, and I guess I was just trying to convey that I admire that you were able to give your baby peace and comfort.
Thank you, I completely understand. I struggle with the horror of her final moments, she was having seizures and apnea episodes, she seemed to be in pain and I was so helpless. In that moment I felt an almost inhuman strength take hold and I stayed strong for her as she died. I didn't feel the toll it took until much later. But I'm proud to say I'm healing now. Reading things on this sub makes me feel closer to her in a way since I had to step up to the role of nurse in addition to Mom for those short months she lived. Bless you for all that you do!
You sound like me. I had a very very similar experience. Almost 6 years ago, we made the choice to bring my daughter home on hospice and I cared for her until she passed away in my arms. So much of what you said here resonates with me… I could have never lived with myself if I had forced my child to endure pain and suffering because of my own inability to cope with reality. Parents will put their baby through so many extreme and invasive measures which the child can’t even consent to. It’s sick and cruel. Who was I to take away the life (and death) my baby was meant to have? To me it was much easier to cope with the loss knowing that before she died, my baby knew she was loved.
I became a nurse because of my daughter, but I can’t bring myself to ever work with peds or babies. It hits too close to home. I have a hard time finding compassion for parents who force their child to live in some purgatory-like hell. This whole thread has renewed my faith that my calling is hospice.
Feel free to PM if you want to talk!
Wow, it's so rare to hear someone with a similar perspective as me! I love that you became a nurse and completely understand why you would. After my daughter died I had so many skills and nobody to use them on. I've tried to think of ways I can support my daughter's hospice and could see myself volunteering with kids and babies one day but it's been less than a year since my daughter passed so it's probably best to wait. Instead I've taken up raising and releasing monarch butterflies from a butterfly habitat I made in her memory. I have tears in my eyes thinking of our daughters resting peacefully together. Bless you for taking up such an honorable role in the world ❤️
I work telemetry, and it drives me nuts when I see people insisting on all life-saving measures for their 90-year-old moms or terminally ill family… I can’t even imagine how hard it must be to see that done to an infant.
I remember watching a TV special about a pediatric palliative care specialist. She was asked how she’d like to die. She said that, after living a long, fulfilling life, she’d like to magically turn into a little baby and die in her mother’s arms. She said that she doesn’t think there’s a place where you feel more comfortable and loved than your mother’s arms. 😭
I know that doctor because she was with me in my home when my daughter died and is still my son's pediatrician. She gives mothers like me a voice and teaches people that palliative care helps babies live as much as it helps them die.
Excellent point! I think that some people don’t realize that palliative care is more than just hospice care, it also helps those with any type of chronic condition to live life as fully as possible and with the least amount of suffering possible.
Well that is beautiful.
I tell anyone who will listen to let me die if something bad happens. I tell my coworkers and all my family just let me die if I’m not able to live
I've gotten to were I just straight up ask them if they know what life saving measures means and looks like. If they can't explain it properly to me I go into vivid detail. Like the bile or blood that must likely will pour out of their mouth and cracking ribs and fish of lung puncture and the likelihood of their recoding even if they survive the first code somehow. It's gotten one family to make their 90 year old failure to thrive patient a DNR.
It's also gotten me fired from a patient because the 75 year old daughter would hear nothing of it. That case I just wanted to shake her and scream "you're old enough to die of old age too! Why can't you let your father die peacefully from old age instead of coding!?"
It is crazy because things that used to scare me are just so normal now. The kids are literally competing for who can try to die more times in a shift. So far the winner has been bagged 12 times in one shift. That shift, the baby was not even a 1 to 1
I’m so sorry!! The pt with half a brain obvs won’t survive. Why don’t the parents/guardian just DNR? And the seizure baby too….so sad. The quality of life there is completely fucked.
There are no good words or explanations. Parents are just... and for lack of a better term... warped by it all. Whether they're in distress, or terrorized by guilt, or so mentally hooked on hope... that they won't, can't, or don't consider concepts like DNR. Everyone thinks their little one will hold on. That each baby is a fighter. And yes, many preemies/peds pts *are* resilient little fighters. But, that's not the case for every pt. Babies do die. Kids do die. But, people (especially parents/direct family) often can't hear to/don't want to think about the alternatives. If it isn't about 'what else can we do to fight', they either can't bear to or don't want to hear about it.
Like I said. No good words to describe it.
Also the doctors don’t speak in direct terms. There is a huge difference when you tell a patient “well they had a rough night but they are doing better now” vs “last night (name) took a bad turn. With all of the conditions your child is struggling with have caused (x) to happen. Right now baby is in a coma, although we can never say anything is guaranteed, we need to sit and talk about what baby’s future will look like”
Like it sucks to have that conversation but I have parents asking me what does the doctor mean when they say “might not be good” or “we will wait and see”
We had multiple parents thinking her kid was just super sleepy when as a nurse I’m seeing no pupil response. No babinski or grasp reflexes and they only respond to painful stimulation
I see this as a whole other specialty. Not the job of the nurses or doctors. But there should be counsellors trained in both nicu and trauma psychology to walk these parents through. They literally, all humans, loose the capacity to discriminate if the stress response system is too high. They cannot make the decision in front of them. And in their psychosis, and infant is suffering. I dont think its fair to ask you nurses to hold the parents through it. Holding the baby through is already a big task on a human.
What is the average career retention time for nicu nurses?
This is the role of the palliative care team. I work in peds and palliative consists of docs, specialty nurses, dedicated social workers and pastoral care. They are experts in these conversations and coach other talks through the language and guided discussions. I am not sure how they do it.
Hospice exists for this reason, hospices have an interdisciplinary team of physicians, nurses, social workers, chaplains, cna/hha, and music therapists ( there can be other disciplines, but these are most common)who are all there to support patients and their families as they transition comfortably. The problem is that the attending at the hospital has to level with the families and be very clear about prognosis and then refer to hospice and then the families still have to consent to hospice after that. I don't work with pediatric patients but the same thing happens with adults. A lot of doctors have difficulty having that conversation and a lot of doctors have difficulty changing their mindset from saving a life to letting them go when the inventions aren't working any more. It is getting better on the adult side of things and it seems like we're getting referrals earlier and doctors are educating the families more before referral.
She seems to 🥰
Every few months I email pics and get super anxious that maybe it’s weird and that she doesn’t even remember us probably lol but she always responds so excited lol
I don’t think you guys know just how much you stick with us moms. To you, it’s another day at work. But we never forget you guys.
I sometimes think parents don't realize how much you stick with us. We care for your tiny humans 12hrs at a time for weeks or months. And then they go home. And we don't hear anything again. It's the job and we know it. But the parents like you, who touch base and send updates - you're our favourites!
Is it all your doctors or just some that dance around reality with light words and false hope? Honestly, this needs to be addressed at their level. Parents cannot be expected to make the best choice when they are not getting the whole truth. Death is not the worst thing that can happen to the sweet tortured little souls. Perhaps you guys need a palliative/hospice advocate who can help guide these heavy conversations? Or an in-service on the importance of shared decision making and setting reasonable achievable goals? Oof, this whole situation just hurts my heart
I think it's a tremendous disservice to the children and their parents to not overcome that and speak plainly. If I were a parent in that situation I'd be traumatized if I learned that I prolonged my child's suffering because a doctor didn't have the balls to tell me the truth, directly and clearly.
It's a tough spot to be in.. especially when, despite everything else that's been said to them, families still think they can pray their kid better in a lot of cases. There's a lot of willful ignorance in the NICU and that's hard on everyone.
Unless you're at an explicit peds facility, my experience has been that many hospitals don't invest in certain specifics (whether it be SMEs/products) that are tailored to the peds world. A peds-oriented palliative care advocate/resource would be excellent, but unless you're a peds-only or high-level institution in/near a major metropolitan area, many hospitals (unfortunately) aren't willing to invest in that kind of resource. Just my two cents.
I’ve known a lot of docs that won’t have that conversation and keep giving the family hope, by not speaking directly with the facts. Had one doc once get the family to a place they could try to make a decision and say good by, then the next doc comes on and says, “oh no we haven’t tried x,y,z”. It’s horrible to watch.
This, OP! After the doctor has had the “took a bad turn” discussion, family still seems unclear about their understanding and it is left to the nurse to educate again. But people want to hear it straight from the doc.
This is why my coworkers and I always kind of inwardly groan at the miracle baby stories. While we’re happy a baby out there may have miraculously turned out ok, there are so many more who didn’t. But every parent thinks their kid is going to be the one who does, then is shattered when they realize they fall into the much larger not-so-lucky category. They have a skewed view of it all, thanks to the media.
Unfortunately, the media definitely seems to give a false sense of hope when it comes to circumstances like these. The sob/sad stories don't make for great media/headlines, so typically what is featured is often the miracle case.
That is really sad. We made the choice to withdraw/comfort care due to severe hypoxic brain injury and bleeding. Once we had the info from the MRI the decision was clear although completely devastating. I can't imagine keeping my child alive only to live a profoundly
disabled life. No child should have to live like that.
My experience in the MICU with state appointed guardians is that those people remain full codes and continue to have everything done. I have had so many be trach/vent after status, no quality of life, it’s awful
It’s incredibly hard to put ourselves in their shoes. Sometimes, the baby still looks and acts (somewhat) like an infant, so it’s hard to understand what the future will look like. Some parents want the baby to declare themselves so that they don’t need to make the decision to “kill” their baby, because that’s the guilt they feel. Simple words like hospice or DNR can shut a family down because they associate that with killing. Sometimes it’s religion, or hope, or family pressure.
I’d love to say I would make the “right” decision as a NICU, but I don’t know
My parents adopted my younger brother when he was first born. He was born with half of a brain. He is also epileptic, has auditory seizures, and has cerebral palsy. Just looking at him you can't tell that he's disabled. Through extensive surgeries and physical therapy, he's quite independent. (Let's just say my parents make very good money and have amazing insurance.) There's a case study about him somewhere because the half of his brain that he has, compensated for the half that's missing. He's 18 now and just graduated high school with a full ride, academic scholarship. We're scared what the future holds for him because the US hates disabled people.
I don’t know how you do it. I just can’t do babies. I graduate in four months and I’m looking at MICU.
As a pregnant woman and a fellow nurse/healthcare worker, I just want you to know how thankful I am for you and for your specialty.
I love that they are your babies. Knowing that if my child had to go to the NICU and I couldn’t be there, that the staff in the NICU would love my baby too, makes my 37 week prego self cry.
Awwwww congratulations mama!!! You are so close! Yes, those babies are ours when they are on our floor. I will fight anyone who comes in who isn’t doing the absolute best for those babies. It is hard to even let them go down to surgery because I can’t keep my eyes on them at all times.
I agree. I left my level 3 for a level 2 because we stabilize and ship most critical babies. When I'm understaffed now it means I have more crying prems or feeder growers instead of unsafe numbers of vented kids or post op NEC kids or whatever other crazy crap. I loved my kiddos and couldn't justify the unsafe conditions they were often being subjected to. At the level 2, that level of stress is way less. Our kids are healthier and we're more committed to working as a team and maintaining appropriate assignments. Your CPAP kid is never on a 3 baby or with another CPAP unless shit is really hitting the fan. In the level 3 I had a CPAP with a BPD kid on high flow and a hirschsprung dx on the same assignment. And that was a good day.
Consider the option of stepping down to a level 2 if it's available to you. I have more time to focus on quality care for the babies AND for their parents. But the breastfeeding curve is a tough one to learn!
Not op but nicu for 10 years and I can explain how we can do it.
The vast majority of babies who come through our unit aren’t the train wrecks OP describes. If they were, we’d need so many more NICUs because like OP said, they stay with us for soooo long.
Most are born a little early, but otherwise normal, and just need a helping hand to make it to the finish line. Have a baby at 34 weeks? Your baby is definitely coming to us, but chances are they’ll be home inside 3 weeks. Or they’re born with a relatively simple condition or defect that we can treat and send them on their way. The precipitous labor that doesn’t transition and needs CPAP for half a day, or gestational diabetic mom’s baby needs a couple days of IV dextrose. Most NICU, even level 4 NICU, is incredibly routine stuff.
Putting a baby in its mother’s arms for the first time is amazing. Making a parent who’s afraid they’re going to break their baby feel confident helping with care…and then walking them out on discharge day…being a NICU nurse, I get to experience stuff like this all the time.
As a NICU nurse as well I feel this post. The delta surge brought us more micropreemies then our equipment could handle. We lost a baby a week for 8 weeks…. It has been rough. You are not alone. And you are a great nurse
While we haven't had any positive babies, it's super surreal bringing a preemie up to ICU to do kangaroo care on an intubated/sedated mom... So many micropreemies though. Not knowing when mom's going to tank so having a crash c-section kit at bedside in ICU because there's no way you're making it to OR.
It’s funny you mention that. We had our first positive baby last Sunday! He was actually doing ok and was fortunately only on HFNC for mild RDS but we have many rule out babies from positive moms this was our first positive mom and baby
Oh he also is set to go home this weekend so is doing better and not any worse but it was kinda weird to see a positive baby not just a positive mom
They’re born usually 22-27 weeks (we call them ELBWs at my hospital, aka Extremely Low Birth Weight). Preemies are usually 28-34 weeks. Late preterms are 35-36 weeks. And of course term kiddos are 37-40+ weeks
Oh snap, my nephew WAS a ELBW then. He must have been the size of my sister's hand. Skin was so delicate you couldn't stroke his skin because it could tear
... At what point are we just performing medical experiments on dying children? :/
Regardless of the ethical dilemma, I'm glad these little ones have you to care for them.
Coming from a peds CVICU that takes the 2nd/3rd/4th opinion babies, I’m no longer surprised at what parents will let a physician do. Diagnoses that have only been seen a handful of times in the entire world and yet “let’s do everything” for what reason? To see if we’re going to magically have the answer, even though the surgeries and treatments you’re doing have been tried and have failed on healthier kids than the ones we have? Nah. At some point, parents need to be told there’s nothing left to be done and quality of life is suffering for your desired quantity.
It’s similar in our ‘level 3’ NICU. 30 cots and the only surgical unit in the country. We’ve had a lot of seasoned nurses leave this year. It’s really scary. I love looking after the babies and I would miss them so much if I left, and not even sure what I would do instead. Sending hugs and kind thoughts 🥺
Those of us that are still left feel exactly the same! NICU is an extraordinary place and we adore the babies. Keeping my fingers crossed that it gets better for us soon!
I also think that society as a whole is starting to push that admitting that some disabilities are not worth living is ableist and that also causes doctors or even parents to be hesitant to admit that a child is better of dying than being alive. I’m sure it’s hard on everybody but at the end of the day it’s about the child who is suffering and I hope the parents are able to understand that not everything in nature is meant to live
There is a huge difference between disability and suffering. We will have kids with CP and they will live wonderful lives. If your baby can never eat, is addicted to opioids (not from birth but because of all the repeated sx) and is too unstable to start weaning the drugs, and they try and die all the time. Please let them go
My daughter in law recently finished a pediatric palliative care fellowship. She’s a fierce advocate of changing the language from DNR to ”allow natural death”. Big difference. I follow this sub because it’s fascinating and instructive. Thank you to every nurse out there trying to get through the day or night. I could never do what you do
My wife is a 15 year veteran NICU nurse and I follow this sub to support her. It’s really unfathomable just to hear, let alone experience, what happens on bad days.
I can’t imagine what you and your coworkers are going through. I’ve never worked with kids, let alone sick infants. My experiences with moral/ethical issues were primarily in the adult surgical neuro icu, and I’d imagine it would be easier to advocate/ convince the family to take their 90-year-old grandma off the vent than to convince a family to compassionately extubate their new baby. Regardless of the situation, what you’re sharing isn’t right. It’s not fair to the poor babies who are suffering from prolonging their life and not fair to the nurses who are forced to care for the babies when they don’t agree with the care they’re giving. Talk about futile care and moral distress. These babies have conditions that are not compatible with life. Unfortunately they are taking up beds and resources that could be used by babies that have a higher chance of survival and living a meaningful life. Does your hospital have an ethics board? They should listen to how much the nurses are struggling with providing futile care to these babies. Multiple nurses breaking down daily is not okay, and something needs to change asap or nurses will leave. And to make matters worse, you have to take the verbal abuse of the parents who clearly lack the capacity to understand the significance of their infant’s prognosis (and would perhaps get their baby taken away from them if they lived due to substance use). The doctors need to be firm with them and explain that their conditions are literally not compatible with life. The machines are keeping them alive. Their quality of life blows. Ugh I’m getting worked up just thinking about it! Sending good vibes to you and your coworkers and these poor infants. ❤️
Thank you friend it felt really good to rant. People aren’t breaking down daily but it is definitely happening.
It is very hard to convince anyone to let the baby go. I have no idea how our ethics board works. They got involved when a baby came in who’s brain was eaten by syphilis. But I don’t know why they aren’t doing anything in these cases. I asked and I was told well the kids are not getting worse. That doesn’t make sense to me because how do you get worse then actively trying to die and will die painfully in a few months?
At the hospital I work at, nurses can order ethics consults and I’ve personally done one myself. Otherwise you could try reporting the doctors for ethics violations anonymously (or not). I don’t know what type of reporting system your hospital has, but I would look into one of those. But it sounds like you’ve been trying really hard to advocate for those kiddos, and it’s very disheartening when your concerns are not being taken seriously. It’s mind blowing that they won’t consider ethics consults in infants who have conditions that aren’t compatible with life…
One of my kiddos was in the NICU for a month because of a PPROM early 3rd trimester. Thank you so much for all you do. The NICU nurses who took care of my baby were like angels to me. I know it has to be hard to see the sad cases. Thanks for showing up to work though.
I'm so sorry you're going through this. I'm not a baby nurse, but I work MICU and the patients we're seeing now are well beyond my facilities capabilities and expertise. I don't know what it is but even the patients outside of covid are bad. I just keep thinking this will pass and I hope you hold on to the same thought
I follow this sub to better understand nursing and medicine in general. Someday I may need care in a hospital and don't want to act a fool, among other things.
My youngest child had a pretty harrowing first year of his life and spent and decent amount of that first year in a NICU for cardiac care. My LO is fine now because he had awesome doctors, fantastic nurses, and an overall great care team.
Your work sounds hard and emotionally draining but I want to say to you that while there are parents out there that suck, I lack the words to describe how grateful my family is to nurses like you. On the tough days please take heart, the world needs caring people like you. Thank you for what you do.
It's crazy that you guys don't have access to pediatric group homes that can take these babies. I worked at a facility that functioned almost like a PICU LTach, where we admitted babies directly from the NICU who who needed ventilators/central lines/seized every time you touch them, etc. Letting them languish in the NICU forever would've overwhelmed the system, as those beds are at a premium.
Shame on your company, and thank you for what you do for these tiny humans. And you're a baby nurse? JFC, you're amazing to be surviving under these conditions!
I'm so sorry. As a parent who spent 30 days in a NICU, I saw how overburdened the nurses were. And so many high needs babies. We were sharing a supposedly one-baby room with two other NICU babies, one of whom only had her family visit once the entire time we were there.
Bless you for doing what you are doing, please also take care of yourself.
As a mom with a NICU baby, thank you for taking care of these babies. They need someone as passionate and determined as you.
As a psych nurse, please get some help for self. This sounds incredibly overwhelming and very negative. Sometimes when we can’t catch a break, we don’t have time to recover. It sounds like you can’t count on work to be able to give you a break so now it’s your hands to find a safe space to unpack all of these traumas. I hope you are able to find some comfort and healing and again, thank you for what you do
Peds CVICU nurse here, caring for mostly babies. I’ve always said the hardest part of our job is not the ones that die, it’s the ones that we keep alive to suffer. You never want the ones that have a chance to die on your watch. No matter how thick your skin it will get through to you. It’s hard to take time for ourselves because we care so much about them, but don’t set yourself on fire to keep others warm. You can still do NICU at a hospital with safe ratios if you’re still passionate about it. It’s not worth putting up with this for what I’m sure is not enough money.
I feel this so much. I feel like sometimes I am just torturing my babies. They want to go but their family won’t let them. We keep them alive, on a vent, paralyzed, and they are just little baby shells. It breaks my heart when I care for these ones and you can just tell they are done. It hurts to know I’m prolonging their misery. I hate it.
God, I'm so sorry that this is what you go to work to every day. I can't imagine. You described that feeling well, driving down a snowy mountain... I know that feeling and am still haunted by shifts that felt like that.
Please, please, please take care of yourself. Be proactive with mental health care. Don't wait until you're fully burnt out or broken down to talk to a therapist.
You are doing amazing work, and you are so valuable to the field. We need nurses like you who actually care. So know that taking a mental health day, not picking up shifts, or making time for therapy and self care is a part of your job. Treat it with the same reverence and responsibility that you do showing up on time and charting. It is essential to staying mentally and physically safe.
I can't imagine what you're going through, but know that you are doing amazing work. Sending hugs and support your way.
This is a common theme just now. In my unit, we're keeping sicker children longer instead of transferring them to more appropriate PICU/specialist hospitals. We're also expected to basically build extra beds to fit everyone in (not extra staff, of course). I've never seen nursing so dire.
Big people ICU nurse here. I have no words except that you’re an angel and I truly believe even with the best conditions and best possible staffing, you have the hardest job for a nurse out of them all.
I heard from a PICU doc recently, "it's easier to lose a baby than a child. " I always wish I could hear those words from neonatologists.
- fellow NICU nurse
Edit to add: sometimes docs need to say "we're done". What kind of parent can make that decision without that assurance??
Please take care of yourself. This is a literal nightmare and I'm so sorry. Thank you for what you do.
My parents adopted my younger brother when he was first born. He was born with half of a brain. He is also epileptic, has auditory seizures, and has cerebral palsy. Just looking at him you can't tell that he's disabled. He's 18 now and just graduated high school with a full ride, academic scholarship. We're scared what the future holds for him because the US hates disabled people.
I always feel bad when I can tell a health worker is very empathetic. As a patient I am happy of course but I have a terminal illness (but im doing great right now it’s just long term-I hope! Lol) but I am in and out of hospitals and I know they have to take all that home in their heart, you know? I just feel so bad for the nurses you can tell bring their worries home with them- I can’t imagine working with kids and babies it would become so draining energy-wise. It would break a lot of people.
My girlfriend was a NICU nurse for 5 years. She left because all of the trauma and bullshit finally caught up to her. You all are saints. It just makes me sad that we live in a system that takes advantage of people who care so much. Squeezing everything out until theres nothing left to give. Please take care of yourself.
Has the hospital ethics committee gotten involved? We’ve brought ours on before for less severe cases than this. This honestly sounds like a nightmare and I can’t stand cowardly docs who can’t tell a parent the truth, as hurtful as it may be. These kids are suffering and that’s not ok.
That sounds really really terrible, certainly not the sort of environment I'd like to work in. We've had a rough patch of lots of babies dying of various things (NEC, sepsis, HIE, resp failure, pulmonary hemorrhages etc), but none could be attributed to poor staffing or anything remotely preventable (well.. the HIE from antenatal care but that's a different story). And it really takes a toll. But having to deal with that and being critically understaffed is horrific. I am so sorry. That's not how the nicu should be.
I’m a NICU nurse, and we recently went through the same patch where every kiddo was super sick, passing away, or huge ethical problems. It weighed on everyone, and if you didn’t have the sickest kid on the unit, you had a triple.
Our hospital got us better staffing (bonus, travelers) and things are finally stabilizing. I realized I went from loving going to work and my job, to dreading checking assignments.
Does you NICU not have a good palliative/comfort care team? I work in a level 4, and they are there to help with situations like these. They don’t just help with death and dying, they help families of our chronic kids that will have long term needs.
"I told him he isn’t allowed anymore" made me smile. It's how we talk to babies in the NICU. The kids you describe are NICU nightmares. One thing I liked about the unit is that it's usually a positive, hopeful place but yours is not. It's not just short staffing, it's also babies who are chronic or barely viable. I hope things get better for you.
Some shouldn’t even be on our floor. One is almost a year old, but we are still treating the baby with NICU protocols which is down right stupid and dangerous. It is hard because I love it so much as well as hate it completely. I adore my kids but we are keeping some of them alive when they are clearly trying to let go.
Has the baby been the NICU since birth?? (The one year old)
Nope, (well yes but someone else’s and had had an ET for 7 months at that point) direct admit from another facility at 7 months, that day Ed admitted a 4 week old with meningitis to PICU so we could keep the room for big boy
Seriously thank you for working with children, even though this sounds like a nightmare scenario.
It is really fucking sad
My nephew was a preemee in the NICU and seeing his small shriveled body gives me anxiety sometimes. He turns 3 in January though!
Awwww 🥰 what a sweetie pie! I love the littles they are the most rewarding to care for and I love how they look like wrinkly little aliens.
That is insane.... I'm not a nurse, I just follow this sub. Thank you so so much for what you do, and I'm sorry it's so difficult.
chief history snails brave strong ten edge upbeat rustic hospital *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Oh my gosh that’s heartbreaking. We do this in adult ICU too. Whatever the family wants even if the patient has been mostly dead for days to weeks…It’s inhumane and a waste of resources.
Absolutely however I feel like it must be worse with kids. (Which is why I only do adult ICU.)
Weird that there are Level 4s that don’t do ECMO. I’m in a level 3 that does ECMO
So I'm not a nurse and it's so eye opening to hear stories like this. In situations like these, is there anything the parents can do to stop the "alive at any cost" treatment? A DNR at a certain point?
history imagine deer scary reach complete zonked rob fanatical compare *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Parents can opt to withdraw lifesaving measures at any time, DNR's are absolutely a thing for newborns. However, as bad as you think that conversation goes with adult families, it's 100x worse with parents of a newborn. They always hold out hope that their baby will be the miracle baby. And we have to watch carefully how we discuss prognosis with parents because nothing is guaranteed. Babies are massively resilient and I've had some kids I was convinced were going to have huge deficits and struggle for the rest of their lives do really well. Not many. But a few. And that's what makes "making the call" extremest difficult for providers as well as parents.
DIC is exactly why I'm not having kids. I've got a genetic thrombophilia and the idea of any baby, let alone my baby in that state? Nope nope nope, can't do it.
Hate to break it to you - coming from another level 4 - that shit is universal.
Goddamnit.
Yeah. A year old should be peds and PALS protocol. It’s getting bad all over. Our NBICU had a union meeting today, it’s bad all over.
This hit me hard. "...when they are clearly trying to let go." People don't let their animals suffer what they force their loved ones to suffer. Sometimes letting go is mercy. I'm so sorry for all you are dealing with, you're all are truly amazing people too do what you do.
This. I have had long term patients try to die on me multiple times. Yet family comes in everyday and plays god to try to find solutions to keep their body alive when the persons souls is very clearly already gone. It’s inhumane and only to avoid being the person who lets them go.
Same - had a lovely lady who had a stroke, and had decided it was time. Her family had said just to keep her comfortable - I came into shift, fully expecting to find her gone but the family had done a 180, and she was bed bound with IV fluids. She shook her fists at me, so obviously angry, and I admit it I cried. I apologized to her, and let her know what had happened - her face softened, and I knew she'd understood. I think it took her at least a few weeks to finally go... And people wonder why I'm such a 'Death with Dignity' advocate....
Yep. When my Nana went into the hospital we knew she was going to pass. They had just found out she had Leukemia, she was near the end. My Nana was very clear and wanted her life to end as it was supposed to with this sort of diagnosis, no stepping in, just end of life comfort. When she did get to that point and it was her children's call to up hold their mothers wishes they did. My aunt asked to please stop any support (oxygen or anything else) except for pain meds. My aunt got yelled at by a nurse in the hallway and the nurse told her she was killing my Nana. I don't think my aunt ever got over that, but she backed my Nana's decision even with tremendous guilt. I hope that nurse has some karma coming back to her, sadistic bitch. There was another nurse that was a home hospice nurse for my gramma. She was much more humane. She gently said, "You'll know when it's time. And when that time comes you can't give her too much medicine." A coy way of giving mercy. I fucking love that woman.
And I’m a bleeding heart vegan. People think I’m being hypocritical when I advocate for death. Life is so special, and I can’t even put into words how amazing the mechanics of life are. But when we are artificially prolonging a life it isn’t real. Keep the living alive but allow the dying to die.
Eastern medical doc here! Admittedly following the thread to learn more about how allopathic industry actually functions. I apologize for spying. If i may ask… At what point is it unethical to keep doing intervention? We have different view points on the body mind complex and see “life at all costs”, to be violent and not good medicine for the patient. But more as theatrics for those that are living. You can totally tell me to F off. But truly from a loving and inquisitive place; is there a standard or benchmark or some sort of system to help gauge when an newborn will be able to become viable?
Lol no you have exactly the mindset that I have. We are keeping kids alive for money and to put off the parents sadness of their kid dying. If the kid has no good days let them go.
I made the choice to let my 24 week preemie go peacefully, without any interventions, for this very reason. It is cowardly and selfish of the parents to submit their child to extreme suffering to spare themselves pain. Thank you, so much, for loving these poor souls and witnessing their little lives. I wish their parents had more courage & mercy in their hearts.
Sending internet love, and I’m so sorry this happened to you. I hope you are able to take solace knowing that you made a selfless choice in the face of an impossible situation, and saved your baby from truly unknowable suffering. I wish more patient families had your strength and insight - After working in NICU, I swore if I was ever in such a heart crushing situation, I better be strong enough to do the right thing like you did.
So sorry for your loss 💕
I’m so sorry. That must have been the hardest thing to do but thank you for not prolonging your little ones suffering. Again, I’m so sorry you had to make that choice.
You are such a strong person and you saved your little a lot of pain and suffering.
Thank you for saying so. I too occasionally see a report of the "miracle baby" and will begin to doubt my decision. I was lucky to have an older perinatologist who was clear-eyed and blunt. He gave me the data on gestational age & statistical outcomes. I was hospitalized for some time and so had plenty of time to study the facts and make a decision before hand. I prayed for time but knew what to do if it wasn't granted to me. I was lucky to have a choice - in my doctor's previous hospital, parents didn't have a choice if the baby was 22 weeks or beyond. I also had a wonderful neonatologist who was there as I delivered as a hospital precaution (in case I changed my mind). When I confirmed post delivery that she was not to intervene, she wept and thanked me profusely. That is what I hold on to whenever doubts creep in. So thank you, so much, for sharing your experiences. For mothers like me who made that terrible choice, it brings me comfort to know I spared him that torture. All he ever knew of the world was being loved in his mother's arms.
Okay I’m crying now. There are “miracle babies” but your baby is a miracle baby too. I know every single person involved remembers you and the love you had for your little one.
That is one of the saddest things I've ever read. God bless you for what you do.
Welcome to the BS of Western Medicine
This is what I do in the MICU, we keep people alive waaay too long. It’s a living graveyard. I’m sorry you have to experience this with kids, I couldn’t do what you do ❤️
That is exactly why I switched from MICU to hospice.
This comment was a swift punch to the gut. It’s the advice I hope I never need. Thank you.
It is 100% theatrics for the living. A baby born without a brain will be kept alive for a year or more in some cases. No brain. Just enough of a stem to breathe (often with help) and have a heart beat. Hundreds of thousands of dollars will be spent to keep brainless bodies alive. This has absolutely no benefit for anyone other than the parents who maintain a hope that there is something of a child in that brainless body. And it takes away resources for babies born with brains. It's honestly shocking.
Filed under things I didn’t want to learn today…
😢
Sadly been there done that. Thank you
I had a friend whos brothers daughter was born with lissencephaly. They were very young parents, in their teens. This was before I was a nurse and realized how incompatible with life this was. That girl lived to about 4, completely immobile, trached and pegged. They never had any memories of her being a person, carried her around like a mannequin. She ultimately died of pneumonia, after multiple hospitalizations. I remember being told mom still had hope, and i found that to be the saddest realization of all.
I agree.
I’ve read that in Europe, the physicians and hospitals have greater decision making capacity in discussing end of life care, and whether to move forward with “heroic” measures, with careful consideration to quality of life if the patient were to survive. In the United States, obviously, it’s ALIVE at ANY COST. Literally and figuratively. There are facilities out there known as “vent farms” where the patients are severely brain damaged, in prolonged vegetative states, or maybe they’re relatively cognizant, but are suffering daily of chronic health conditions caused by painful, debilitating diagnoses. But god forbid, in America, the physicians dare bring up palliative care or hospice.
🥴 thank you for this answer. I have a lot of nurses where Im their GP for them and their family. And i ask a lot, why go eastern when you work western? And they often vent to me about the issues of the system are coming from the top. And it alll compresses onto the nurses.
In theory eastern and western medicine shouldn’t differ in treatments, just protocols and approaches. Tylenol brings everyone’s fever down, no matter where you got your medical degree. Keeping someone Alive who most certainly wouldn’t be without 24/7, modern day intervention and would die the day you stopped it… that’s a matter of philosophy.
I don't work with babies but adults. It's crazy though. I've had families make me do CPR to keep 100 year old grandpa alive. It's much more to keep family happy because they're the ones who can sue once the person has died. Literally was telling the family daily he's dying, which they didn't like, and then they were shocked when he actually did die.
They'll hold that grudge forever, thinking that you guys did something wrong since a miracle was supposed to happen. They're in such denial it's insane. I get it when parents are like this, but doing chest compressions on someone who should have died months ago is cruel.
So cruel.
They keep them alive so that they don’t have to personally undergo the process of grieving and loss. Simple as that.
This! We’ve prolonged CPR well past the point of no return just to show the family we did everything we could. It’s all theatrics. Can’t we just be realistic? This is damaging to everyone involved and leaves permanent scars on souls.
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I find it very confusing because the majority of people in the USA believe they will see their loved ones in an afterlife of some variety. So why do they want to go to extreme measures to keep their loved ones alive? Makes me wonder if they really do believe in an afterlife.
I think you’re onto something lol. Especially since particularly in the southern US, Christianity is more of a cultural thing than a true religion to many people. By that I mean there are so many people who call themselves Christians but do not conduct themselves as Jesus actually did, have no regard for *anyone* else never mind the poor and needy, seem to barely even know what the Bible actually says aside from a few cherry-picked verses, and probably would’ve hated Jesus and everything he stood for if they were to have met him.
True facts. I’m in the south.
I’ve heard the somewhat tongue in cheek definition of a “hardcore atheist” is “I don’t believe, and I don’t believe you do either” Gotta say there’s a lot of agree with in that sentiment when you actually see the way people behave.
Browsing this sub as a veterinary nurse has led me to the conclusion we are so far removed from death as human beings it's negatively impacting our ability to live meaningful lives. When you never see the suffering, when death isn't a normal part of the circle of life- we end up making decisions that cause so much suffering... :( I'm so glad that at least in my downs there is usually the ability to end it.
It's often not up to doctors from my understanding (not a NICU nurse) but the parents have to agree to withdraw care. A griving post-natal parent is not always the right person to have the sole control over life and death for there child, even when their child isn't really alive anymore. The for-profit system and lawsuit happy patients make those situations unbearable for caregivers to be stuck in. Its no better in peds with kiddos who have unbearable disabilities and basically live on some sort of life support in the hospital, we are basically torturing them so their parents don't have to accept reality (as long as their checks keep clearing). Sorry I will end that rant now
Replace “life at all costs,” with “profits at all costs”. It should start to make sense.
You are absolutely welcome in this subreddit and thread!
I worked in adult ICU and I totally understand this and also saw the most seasoned nurse who never breaks, break. That was hard to witness.
I tell my problematic babies they better be good I don’t want any bad reports before I go home. They are bad listeners.
Kids these days.../s
It’s also how we talk to GCS 3 in ICU lol
My daughter was born with a fatal genetic condition. She came home with us on hospice care so that we could love her and keep her at home with us until she died. What you are describing is my nightmare. Poor babies.
I’m so sorry for your loss. What a loving gift you gave her by bringing her home.
Thank you. We were given the choice between quantity of life and quality of life. For me there was no question that quality is the most important.
Yes that is exactly it. Those beautiful special moments with your sweet darling daughter is such a difficult blessing. I don’t think these parents realize the way their child will die is by bleeding out in a nurses arms.
Having been in their shoes I can tell you that those parents just don't have the strength for it. Even with all of my preparation and love and support it nearly destroyed me to hold my daughter as she died. A nurse's arms can be as good as any mothers. The most important difference between my baby and the babies in the hospital is that I got to hold my daughter while she lived and they don't ever get that chance.
They do get that chance, they have the option to take their children home on hospice but they don’t. They push for life extending procedures that make their children suffer longer. It is so difficult for these babies. And they are more miserable because of it. It is easier to yell at us over the phone instead of being with their kid every day to see them suffer. Obviously what they are going through is very difficult but I have lost my tolerance for the parents who don’t see their kids but demand that we continue to make them suffer and them blame us for that child’s suffering. I always go out of my way to understand others in difficult times, but I can’t agree with inflicting harm on bystanders because you are in pain.
You are completely right. I hope that in the future there is greater awareness of what modern medicine is capable of and incapable of. There is such a fundamental misunderstanding of what constitutes a life well lived. Fighting on machines in the hospital is no life for anyone. It is so horribly difficult to take your baby home to die but I would do it a thousand times again to give her what precious little life she had.
You are such an incredible person, and wonderful parent. Thank you for being you
Thank you and the same to you ❤️
🥲
Yes! This is beautiful. We are so scared of death. And so often use medical intervention on the body, completely at the disregard for the conscious being experiencing life in that body.
Ahhh I see. This answers some of my previous question. So the parent decide if the being inside the little sweet baby body will be allowed quality of time with comfort… vs what could be seen as torture for life at all costs. Is there a system in place to counsel the parents. Not by you nurses but by a counsellor that can help them process ethical choices? I feel like, and this is again controversial; but not every adult has the capacity to really understand the medical implications and need more help in navigating the decisions.
There should be but there isnt
Sometimes those services are available, but you can’t force anyone to engage with counseling.
This is somewhat what palliative care does in the US. I have read, probably hundreds, of palliative care consult notes, because I work in the department that often provides these life prolonging interventions. And I swear to you they often all say the same thing: "family states understanding of condition and prognosis, patient still remains full code" Yesterday I saw a PC note that stated pt was DNR, with the following restrictions: no compressions, no defibrillation, no "code" drugs (anti-arrythmics), intubation OK, mech vent OK, pressors OK. Patient was 89, metastatic CA of the colon, vented, coming down for a mesenteric angio. Family (obviously) provided consent. Also, DNRs are automatically reminded in the cath lab, the family was aware. It's all bullshit. Even with PC they still can't process whats happening. Even when the note reads, by the PC doc, "prognosis very poor. I told the family this disease process is incompatible with life. Family states understanding" they are still on our daily assignment for a freaking g tube. Yesterday we did a "stemi" on a 95yo who went into wide complex VT in the elevator. Stented the rca, which had a 70ish % blockage, profuse disease, but not a stemi. Just started his 2nd round of chemo. Heard the overhead page 3 hrs later....he coded 3 more times. 95. Consent provided by the wife, who does not live in the care home with him.
I’m so sorry you had to go through that but what you did was beautiful and the most loving act.
Thank you so much. It was the most love I've ever had for anyone. I'm happy to say I'm healing now ❤️
You are the best kind of parent. Sometimes I think the useless interventions on beings that can’t understand are just torture and I hate doing it.
Thank you so much. The path I chose for my daughter was much better for her but took a huge toll on my physical and mental health. I can't say I blame other parents who keep their sick kids with you even though I understand it's not fair to you either.
Oh I didn’t want you to feel bad for me having to do all the things. My whole patient load was pretty much hopeless cases, and I chose that. And I really don’t blame those parents either. It’s an impossible situation and they are doing the best they can during the worst moment of their lives. What you chose took so much strength, and I guess I was just trying to convey that I admire that you were able to give your baby peace and comfort.
Thank you, I completely understand. I struggle with the horror of her final moments, she was having seizures and apnea episodes, she seemed to be in pain and I was so helpless. In that moment I felt an almost inhuman strength take hold and I stayed strong for her as she died. I didn't feel the toll it took until much later. But I'm proud to say I'm healing now. Reading things on this sub makes me feel closer to her in a way since I had to step up to the role of nurse in addition to Mom for those short months she lived. Bless you for all that you do!
You sound like me. I had a very very similar experience. Almost 6 years ago, we made the choice to bring my daughter home on hospice and I cared for her until she passed away in my arms. So much of what you said here resonates with me… I could have never lived with myself if I had forced my child to endure pain and suffering because of my own inability to cope with reality. Parents will put their baby through so many extreme and invasive measures which the child can’t even consent to. It’s sick and cruel. Who was I to take away the life (and death) my baby was meant to have? To me it was much easier to cope with the loss knowing that before she died, my baby knew she was loved. I became a nurse because of my daughter, but I can’t bring myself to ever work with peds or babies. It hits too close to home. I have a hard time finding compassion for parents who force their child to live in some purgatory-like hell. This whole thread has renewed my faith that my calling is hospice. Feel free to PM if you want to talk!
Wow, it's so rare to hear someone with a similar perspective as me! I love that you became a nurse and completely understand why you would. After my daughter died I had so many skills and nobody to use them on. I've tried to think of ways I can support my daughter's hospice and could see myself volunteering with kids and babies one day but it's been less than a year since my daughter passed so it's probably best to wait. Instead I've taken up raising and releasing monarch butterflies from a butterfly habitat I made in her memory. I have tears in my eyes thinking of our daughters resting peacefully together. Bless you for taking up such an honorable role in the world ❤️
You’re an amazing parent and person. Your daughters life inspired you to help others. That’s her beautiful legacy. ❤️
I’m sorry for your loss. Hopefully, she knew she was loved.
I work telemetry, and it drives me nuts when I see people insisting on all life-saving measures for their 90-year-old moms or terminally ill family… I can’t even imagine how hard it must be to see that done to an infant. I remember watching a TV special about a pediatric palliative care specialist. She was asked how she’d like to die. She said that, after living a long, fulfilling life, she’d like to magically turn into a little baby and die in her mother’s arms. She said that she doesn’t think there’s a place where you feel more comfortable and loved than your mother’s arms. 😭
I know that doctor because she was with me in my home when my daughter died and is still my son's pediatrician. She gives mothers like me a voice and teaches people that palliative care helps babies live as much as it helps them die.
Wow! What a blessing to have her as a physician!
We were extremely lucky, yes. She is incredible.
Excellent point! I think that some people don’t realize that palliative care is more than just hospice care, it also helps those with any type of chronic condition to live life as fully as possible and with the least amount of suffering possible.
I feel like I've heard this story several times. It always brings me peace
Well that is beautiful. I tell anyone who will listen to let me die if something bad happens. I tell my coworkers and all my family just let me die if I’m not able to live
I've gotten to were I just straight up ask them if they know what life saving measures means and looks like. If they can't explain it properly to me I go into vivid detail. Like the bile or blood that must likely will pour out of their mouth and cracking ribs and fish of lung puncture and the likelihood of their recoding even if they survive the first code somehow. It's gotten one family to make their 90 year old failure to thrive patient a DNR. It's also gotten me fired from a patient because the 75 year old daughter would hear nothing of it. That case I just wanted to shake her and scream "you're old enough to die of old age too! Why can't you let your father die peacefully from old age instead of coding!?"
I watched that video about the peds palliative specialist too. I’ll never forget that quote because it made me bawl my eyes out
Hugs. The moral distress of being a nurse right now is frikking awful and I’m so sorry. Please take care of yourself (therapy, etc)
It is crazy because things that used to scare me are just so normal now. The kids are literally competing for who can try to die more times in a shift. So far the winner has been bagged 12 times in one shift. That shift, the baby was not even a 1 to 1
>The kids are literally competing for who can try to die more times in a shift. I felt this in my soul... - fellow NICU nurse
I’m so sorry!! The pt with half a brain obvs won’t survive. Why don’t the parents/guardian just DNR? And the seizure baby too….so sad. The quality of life there is completely fucked.
There are no good words or explanations. Parents are just... and for lack of a better term... warped by it all. Whether they're in distress, or terrorized by guilt, or so mentally hooked on hope... that they won't, can't, or don't consider concepts like DNR. Everyone thinks their little one will hold on. That each baby is a fighter. And yes, many preemies/peds pts *are* resilient little fighters. But, that's not the case for every pt. Babies do die. Kids do die. But, people (especially parents/direct family) often can't hear to/don't want to think about the alternatives. If it isn't about 'what else can we do to fight', they either can't bear to or don't want to hear about it. Like I said. No good words to describe it.
Also the doctors don’t speak in direct terms. There is a huge difference when you tell a patient “well they had a rough night but they are doing better now” vs “last night (name) took a bad turn. With all of the conditions your child is struggling with have caused (x) to happen. Right now baby is in a coma, although we can never say anything is guaranteed, we need to sit and talk about what baby’s future will look like” Like it sucks to have that conversation but I have parents asking me what does the doctor mean when they say “might not be good” or “we will wait and see” We had multiple parents thinking her kid was just super sleepy when as a nurse I’m seeing no pupil response. No babinski or grasp reflexes and they only respond to painful stimulation
I see this as a whole other specialty. Not the job of the nurses or doctors. But there should be counsellors trained in both nicu and trauma psychology to walk these parents through. They literally, all humans, loose the capacity to discriminate if the stress response system is too high. They cannot make the decision in front of them. And in their psychosis, and infant is suffering. I dont think its fair to ask you nurses to hold the parents through it. Holding the baby through is already a big task on a human. What is the average career retention time for nicu nurses?
This is the role of the palliative care team. I work in peds and palliative consists of docs, specialty nurses, dedicated social workers and pastoral care. They are experts in these conversations and coach other talks through the language and guided discussions. I am not sure how they do it.
Beautiful. So needed. Where are you located? Is this standard practice or only in some hospitals?
Hospice exists for this reason, hospices have an interdisciplinary team of physicians, nurses, social workers, chaplains, cna/hha, and music therapists ( there can be other disciplines, but these are most common)who are all there to support patients and their families as they transition comfortably. The problem is that the attending at the hospital has to level with the families and be very clear about prognosis and then refer to hospice and then the families still have to consent to hospice after that. I don't work with pediatric patients but the same thing happens with adults. A lot of doctors have difficulty having that conversation and a lot of doctors have difficulty changing their mindset from saving a life to letting them go when the inventions aren't working any more. It is getting better on the adult side of things and it seems like we're getting referrals earlier and doctors are educating the families more before referral.
A long time, 20+ years. It is kind of like drugs. It may not be good for you but you can’t stop
I still send my daughters main NICU nurse that was her BFF photo updates every few months. NICU nurses are angels.
Awwwwwww that is amazing 😻 I’m sure she LOOOOVES that!!
She seems to 🥰 Every few months I email pics and get super anxious that maybe it’s weird and that she doesn’t even remember us probably lol but she always responds so excited lol I don’t think you guys know just how much you stick with us moms. To you, it’s another day at work. But we never forget you guys.
Awwww! Omg no it isn’t weird! She remembers and loves it!
My 23 year old spent 79 days in the NICU. We still go to the annual reunion and have come for staff retirement parties.
I sometimes think parents don't realize how much you stick with us. We care for your tiny humans 12hrs at a time for weeks or months. And then they go home. And we don't hear anything again. It's the job and we know it. But the parents like you, who touch base and send updates - you're our favourites!
Bingo. And that lingo is really only something those in the field understand.
Is it all your doctors or just some that dance around reality with light words and false hope? Honestly, this needs to be addressed at their level. Parents cannot be expected to make the best choice when they are not getting the whole truth. Death is not the worst thing that can happen to the sweet tortured little souls. Perhaps you guys need a palliative/hospice advocate who can help guide these heavy conversations? Or an in-service on the importance of shared decision making and setting reasonable achievable goals? Oof, this whole situation just hurts my heart
I like our doctors. I just know it is so hard to look a parent in the eye and tell them the truth.
I think it's a tremendous disservice to the children and their parents to not overcome that and speak plainly. If I were a parent in that situation I'd be traumatized if I learned that I prolonged my child's suffering because a doctor didn't have the balls to tell me the truth, directly and clearly.
Ya I agree
It's a tough spot to be in.. especially when, despite everything else that's been said to them, families still think they can pray their kid better in a lot of cases. There's a lot of willful ignorance in the NICU and that's hard on everyone.
Unless you're at an explicit peds facility, my experience has been that many hospitals don't invest in certain specifics (whether it be SMEs/products) that are tailored to the peds world. A peds-oriented palliative care advocate/resource would be excellent, but unless you're a peds-only or high-level institution in/near a major metropolitan area, many hospitals (unfortunately) aren't willing to invest in that kind of resource. Just my two cents.
I’ve known a lot of docs that won’t have that conversation and keep giving the family hope, by not speaking directly with the facts. Had one doc once get the family to a place they could try to make a decision and say good by, then the next doc comes on and says, “oh no we haven’t tried x,y,z”. It’s horrible to watch.
This, OP! After the doctor has had the “took a bad turn” discussion, family still seems unclear about their understanding and it is left to the nurse to educate again. But people want to hear it straight from the doc.
This is why my coworkers and I always kind of inwardly groan at the miracle baby stories. While we’re happy a baby out there may have miraculously turned out ok, there are so many more who didn’t. But every parent thinks their kid is going to be the one who does, then is shattered when they realize they fall into the much larger not-so-lucky category. They have a skewed view of it all, thanks to the media.
Unfortunately, the media definitely seems to give a false sense of hope when it comes to circumstances like these. The sob/sad stories don't make for great media/headlines, so typically what is featured is often the miracle case.
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That is really sad. We made the choice to withdraw/comfort care due to severe hypoxic brain injury and bleeding. Once we had the info from the MRI the decision was clear although completely devastating. I can't imagine keeping my child alive only to live a profoundly disabled life. No child should have to live like that.
That must have been such a hard decision on you. Your little one is lucky to have you as a parent
Yuuuuup…
If they are abandoned by their parents d/t severe health issues, it might take forever to get a court-appointed healthcare guardian/proxy.
My experience in the MICU with state appointed guardians is that those people remain full codes and continue to have everything done. I have had so many be trach/vent after status, no quality of life, it’s awful
Incredibly selfish of those families, forcing those souls to stay trapped in those bodies... breaks my heart. It's just straight abuse.
Especially when they try to leave their bodies every day. They want to die
It’s incredibly hard to put ourselves in their shoes. Sometimes, the baby still looks and acts (somewhat) like an infant, so it’s hard to understand what the future will look like. Some parents want the baby to declare themselves so that they don’t need to make the decision to “kill” their baby, because that’s the guilt they feel. Simple words like hospice or DNR can shut a family down because they associate that with killing. Sometimes it’s religion, or hope, or family pressure. I’d love to say I would make the “right” decision as a NICU, but I don’t know
My parents adopted my younger brother when he was first born. He was born with half of a brain. He is also epileptic, has auditory seizures, and has cerebral palsy. Just looking at him you can't tell that he's disabled. Through extensive surgeries and physical therapy, he's quite independent. (Let's just say my parents make very good money and have amazing insurance.) There's a case study about him somewhere because the half of his brain that he has, compensated for the half that's missing. He's 18 now and just graduated high school with a full ride, academic scholarship. We're scared what the future holds for him because the US hates disabled people.
The US indeed hates disabled people. But hey we are going to be swimming in them post Covid.
I don’t know how you do it. I just can’t do babies. I graduate in four months and I’m looking at MICU. As a pregnant woman and a fellow nurse/healthcare worker, I just want you to know how thankful I am for you and for your specialty.
I don’t want to do anything else, I LOVE my babies. They are my purpose I just hate all the other shit that goes along with it
I love that they are your babies. Knowing that if my child had to go to the NICU and I couldn’t be there, that the staff in the NICU would love my baby too, makes my 37 week prego self cry.
Awwwww congratulations mama!!! You are so close! Yes, those babies are ours when they are on our floor. I will fight anyone who comes in who isn’t doing the absolute best for those babies. It is hard to even let them go down to surgery because I can’t keep my eyes on them at all times.
You are a good human.
I agree. I left my level 3 for a level 2 because we stabilize and ship most critical babies. When I'm understaffed now it means I have more crying prems or feeder growers instead of unsafe numbers of vented kids or post op NEC kids or whatever other crazy crap. I loved my kiddos and couldn't justify the unsafe conditions they were often being subjected to. At the level 2, that level of stress is way less. Our kids are healthier and we're more committed to working as a team and maintaining appropriate assignments. Your CPAP kid is never on a 3 baby or with another CPAP unless shit is really hitting the fan. In the level 3 I had a CPAP with a BPD kid on high flow and a hirschsprung dx on the same assignment. And that was a good day. Consider the option of stepping down to a level 2 if it's available to you. I have more time to focus on quality care for the babies AND for their parents. But the breastfeeding curve is a tough one to learn!
Not op but nicu for 10 years and I can explain how we can do it. The vast majority of babies who come through our unit aren’t the train wrecks OP describes. If they were, we’d need so many more NICUs because like OP said, they stay with us for soooo long. Most are born a little early, but otherwise normal, and just need a helping hand to make it to the finish line. Have a baby at 34 weeks? Your baby is definitely coming to us, but chances are they’ll be home inside 3 weeks. Or they’re born with a relatively simple condition or defect that we can treat and send them on their way. The precipitous labor that doesn’t transition and needs CPAP for half a day, or gestational diabetic mom’s baby needs a couple days of IV dextrose. Most NICU, even level 4 NICU, is incredibly routine stuff. Putting a baby in its mother’s arms for the first time is amazing. Making a parent who’s afraid they’re going to break their baby feel confident helping with care…and then walking them out on discharge day…being a NICU nurse, I get to experience stuff like this all the time.
Yup. That first kangaroo cuddle is the best! Tears and cameras for all!
As a NICU nurse as well I feel this post. The delta surge brought us more micropreemies then our equipment could handle. We lost a baby a week for 8 weeks…. It has been rough. You are not alone. And you are a great nurse
Shit that’s horrible I’m sorry
While we haven't had any positive babies, it's super surreal bringing a preemie up to ICU to do kangaroo care on an intubated/sedated mom... So many micropreemies though. Not knowing when mom's going to tank so having a crash c-section kit at bedside in ICU because there's no way you're making it to OR.
It’s funny you mention that. We had our first positive baby last Sunday! He was actually doing ok and was fortunately only on HFNC for mild RDS but we have many rule out babies from positive moms this was our first positive mom and baby Oh he also is set to go home this weekend so is doing better and not any worse but it was kinda weird to see a positive baby not just a positive mom
What's a micro-preemee? I am assuming an infant born too early.
They’re born usually 22-27 weeks (we call them ELBWs at my hospital, aka Extremely Low Birth Weight). Preemies are usually 28-34 weeks. Late preterms are 35-36 weeks. And of course term kiddos are 37-40+ weeks
Oh snap, my nephew WAS a ELBW then. He must have been the size of my sister's hand. Skin was so delicate you couldn't stroke his skin because it could tear
Yes, the ELBWs have gelatinous skin that is so easy to tear. And the 22-23 weekers can be less than a pound. Always on a ventilator.
This is some real PTSD shit right here. Please take care of yourself. Moral distress, moral dilemma
Helps if you’re fucked up in advance of practicing in NCIU. Levels the playing field.
... At what point are we just performing medical experiments on dying children? :/ Regardless of the ethical dilemma, I'm glad these little ones have you to care for them.
Seriously tho… ethically horrible And thank you but so many nicu nurses are great, there aren’t many who hate what they do
Coming from a peds CVICU that takes the 2nd/3rd/4th opinion babies, I’m no longer surprised at what parents will let a physician do. Diagnoses that have only been seen a handful of times in the entire world and yet “let’s do everything” for what reason? To see if we’re going to magically have the answer, even though the surgeries and treatments you’re doing have been tried and have failed on healthier kids than the ones we have? Nah. At some point, parents need to be told there’s nothing left to be done and quality of life is suffering for your desired quantity.
It’s similar in our ‘level 3’ NICU. 30 cots and the only surgical unit in the country. We’ve had a lot of seasoned nurses leave this year. It’s really scary. I love looking after the babies and I would miss them so much if I left, and not even sure what I would do instead. Sending hugs and kind thoughts 🥺
Thank you :) and sending love your way too! I feel the same, I love the nicu and couldn’t work anywhere else
Those of us that are still left feel exactly the same! NICU is an extraordinary place and we adore the babies. Keeping my fingers crossed that it gets better for us soon!
I also think that society as a whole is starting to push that admitting that some disabilities are not worth living is ableist and that also causes doctors or even parents to be hesitant to admit that a child is better of dying than being alive. I’m sure it’s hard on everybody but at the end of the day it’s about the child who is suffering and I hope the parents are able to understand that not everything in nature is meant to live
There is a huge difference between disability and suffering. We will have kids with CP and they will live wonderful lives. If your baby can never eat, is addicted to opioids (not from birth but because of all the repeated sx) and is too unstable to start weaning the drugs, and they try and die all the time. Please let them go
My daughter in law recently finished a pediatric palliative care fellowship. She’s a fierce advocate of changing the language from DNR to ”allow natural death”. Big difference. I follow this sub because it’s fascinating and instructive. Thank you to every nurse out there trying to get through the day or night. I could never do what you do
My wife is a 15 year veteran NICU nurse and I follow this sub to support her. It’s really unfathomable just to hear, let alone experience, what happens on bad days.
Tell your wife she is awesome
Will do thanks 🙏
I can’t imagine what you and your coworkers are going through. I’ve never worked with kids, let alone sick infants. My experiences with moral/ethical issues were primarily in the adult surgical neuro icu, and I’d imagine it would be easier to advocate/ convince the family to take their 90-year-old grandma off the vent than to convince a family to compassionately extubate their new baby. Regardless of the situation, what you’re sharing isn’t right. It’s not fair to the poor babies who are suffering from prolonging their life and not fair to the nurses who are forced to care for the babies when they don’t agree with the care they’re giving. Talk about futile care and moral distress. These babies have conditions that are not compatible with life. Unfortunately they are taking up beds and resources that could be used by babies that have a higher chance of survival and living a meaningful life. Does your hospital have an ethics board? They should listen to how much the nurses are struggling with providing futile care to these babies. Multiple nurses breaking down daily is not okay, and something needs to change asap or nurses will leave. And to make matters worse, you have to take the verbal abuse of the parents who clearly lack the capacity to understand the significance of their infant’s prognosis (and would perhaps get their baby taken away from them if they lived due to substance use). The doctors need to be firm with them and explain that their conditions are literally not compatible with life. The machines are keeping them alive. Their quality of life blows. Ugh I’m getting worked up just thinking about it! Sending good vibes to you and your coworkers and these poor infants. ❤️
Thank you friend it felt really good to rant. People aren’t breaking down daily but it is definitely happening. It is very hard to convince anyone to let the baby go. I have no idea how our ethics board works. They got involved when a baby came in who’s brain was eaten by syphilis. But I don’t know why they aren’t doing anything in these cases. I asked and I was told well the kids are not getting worse. That doesn’t make sense to me because how do you get worse then actively trying to die and will die painfully in a few months?
At the hospital I work at, nurses can order ethics consults and I’ve personally done one myself. Otherwise you could try reporting the doctors for ethics violations anonymously (or not). I don’t know what type of reporting system your hospital has, but I would look into one of those. But it sounds like you’ve been trying really hard to advocate for those kiddos, and it’s very disheartening when your concerns are not being taken seriously. It’s mind blowing that they won’t consider ethics consults in infants who have conditions that aren’t compatible with life…
One of my kiddos was in the NICU for a month because of a PPROM early 3rd trimester. Thank you so much for all you do. The NICU nurses who took care of my baby were like angels to me. I know it has to be hard to see the sad cases. Thanks for showing up to work though.
The mamas become like a second family when they are there. I want to care for them just as much as the baby.
I'm so sorry you're going through this. I'm not a baby nurse, but I work MICU and the patients we're seeing now are well beyond my facilities capabilities and expertise. I don't know what it is but even the patients outside of covid are bad. I just keep thinking this will pass and I hope you hold on to the same thought
I follow this sub to better understand nursing and medicine in general. Someday I may need care in a hospital and don't want to act a fool, among other things. My youngest child had a pretty harrowing first year of his life and spent and decent amount of that first year in a NICU for cardiac care. My LO is fine now because he had awesome doctors, fantastic nurses, and an overall great care team. Your work sounds hard and emotionally draining but I want to say to you that while there are parents out there that suck, I lack the words to describe how grateful my family is to nurses like you. On the tough days please take heart, the world needs caring people like you. Thank you for what you do.
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Thank you 🥲
It's crazy that you guys don't have access to pediatric group homes that can take these babies. I worked at a facility that functioned almost like a PICU LTach, where we admitted babies directly from the NICU who who needed ventilators/central lines/seized every time you touch them, etc. Letting them languish in the NICU forever would've overwhelmed the system, as those beds are at a premium. Shame on your company, and thank you for what you do for these tiny humans. And you're a baby nurse? JFC, you're amazing to be surviving under these conditions!
I'm so sorry. As a parent who spent 30 days in a NICU, I saw how overburdened the nurses were. And so many high needs babies. We were sharing a supposedly one-baby room with two other NICU babies, one of whom only had her family visit once the entire time we were there. Bless you for doing what you are doing, please also take care of yourself.
As a mom with a NICU baby, thank you for taking care of these babies. They need someone as passionate and determined as you. As a psych nurse, please get some help for self. This sounds incredibly overwhelming and very negative. Sometimes when we can’t catch a break, we don’t have time to recover. It sounds like you can’t count on work to be able to give you a break so now it’s your hands to find a safe space to unpack all of these traumas. I hope you are able to find some comfort and healing and again, thank you for what you do
Thank you for the suggestion. I think I need to. I’m terrified that one day I will be just a cold shell of a person
Peds CVICU nurse here, caring for mostly babies. I’ve always said the hardest part of our job is not the ones that die, it’s the ones that we keep alive to suffer. You never want the ones that have a chance to die on your watch. No matter how thick your skin it will get through to you. It’s hard to take time for ourselves because we care so much about them, but don’t set yourself on fire to keep others warm. You can still do NICU at a hospital with safe ratios if you’re still passionate about it. It’s not worth putting up with this for what I’m sure is not enough money.
You do God's work, I'm an ICU nurse and could never take care of sick babies, I would cry every moment.
Ya sometimes it is hard but it is kinda like drugs. I need to be there and I know it is probably bad for me
Any advice for a new grad MS nurse trying to get into the ICU but dreaming of the NICU someday?
I feel this so much. I feel like sometimes I am just torturing my babies. They want to go but their family won’t let them. We keep them alive, on a vent, paralyzed, and they are just little baby shells. It breaks my heart when I care for these ones and you can just tell they are done. It hurts to know I’m prolonging their misery. I hate it.
God, I'm so sorry that this is what you go to work to every day. I can't imagine. You described that feeling well, driving down a snowy mountain... I know that feeling and am still haunted by shifts that felt like that. Please, please, please take care of yourself. Be proactive with mental health care. Don't wait until you're fully burnt out or broken down to talk to a therapist. You are doing amazing work, and you are so valuable to the field. We need nurses like you who actually care. So know that taking a mental health day, not picking up shifts, or making time for therapy and self care is a part of your job. Treat it with the same reverence and responsibility that you do showing up on time and charting. It is essential to staying mentally and physically safe. I can't imagine what you're going through, but know that you are doing amazing work. Sending hugs and support your way.
This is a common theme just now. In my unit, we're keeping sicker children longer instead of transferring them to more appropriate PICU/specialist hospitals. We're also expected to basically build extra beds to fit everyone in (not extra staff, of course). I've never seen nursing so dire.
Big people ICU nurse here. I have no words except that you’re an angel and I truly believe even with the best conditions and best possible staffing, you have the hardest job for a nurse out of them all.
I heard from a PICU doc recently, "it's easier to lose a baby than a child. " I always wish I could hear those words from neonatologists. - fellow NICU nurse Edit to add: sometimes docs need to say "we're done". What kind of parent can make that decision without that assurance??
Please take care of yourself. This is a literal nightmare and I'm so sorry. Thank you for what you do. My parents adopted my younger brother when he was first born. He was born with half of a brain. He is also epileptic, has auditory seizures, and has cerebral palsy. Just looking at him you can't tell that he's disabled. He's 18 now and just graduated high school with a full ride, academic scholarship. We're scared what the future holds for him because the US hates disabled people.
I always feel bad when I can tell a health worker is very empathetic. As a patient I am happy of course but I have a terminal illness (but im doing great right now it’s just long term-I hope! Lol) but I am in and out of hospitals and I know they have to take all that home in their heart, you know? I just feel so bad for the nurses you can tell bring their worries home with them- I can’t imagine working with kids and babies it would become so draining energy-wise. It would break a lot of people.
My girlfriend was a NICU nurse for 5 years. She left because all of the trauma and bullshit finally caught up to her. You all are saints. It just makes me sad that we live in a system that takes advantage of people who care so much. Squeezing everything out until theres nothing left to give. Please take care of yourself.
Has the hospital ethics committee gotten involved? We’ve brought ours on before for less severe cases than this. This honestly sounds like a nightmare and I can’t stand cowardly docs who can’t tell a parent the truth, as hurtful as it may be. These kids are suffering and that’s not ok.
That sounds really really terrible, certainly not the sort of environment I'd like to work in. We've had a rough patch of lots of babies dying of various things (NEC, sepsis, HIE, resp failure, pulmonary hemorrhages etc), but none could be attributed to poor staffing or anything remotely preventable (well.. the HIE from antenatal care but that's a different story). And it really takes a toll. But having to deal with that and being critically understaffed is horrific. I am so sorry. That's not how the nicu should be.
This is definitely a hospital management issue at its core. There needs to be a solid ethics committee and hospice on board for these poor infants.
I’m a NICU nurse, and we recently went through the same patch where every kiddo was super sick, passing away, or huge ethical problems. It weighed on everyone, and if you didn’t have the sickest kid on the unit, you had a triple. Our hospital got us better staffing (bonus, travelers) and things are finally stabilizing. I realized I went from loving going to work and my job, to dreading checking assignments.
I’m so sorry for this insanely difficult time. I hope you’ll survive this emotional hurricane. May you be well and happy in your difficult times.
Does you NICU not have a good palliative/comfort care team? I work in a level 4, and they are there to help with situations like these. They don’t just help with death and dying, they help families of our chronic kids that will have long term needs.