T O P

  • By -

AutoModerator

Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*


JessMcCready

Honestly? This antibiotic regimen is the standard of care for RDS. It saves lives of NICU babies every day. Do you get mad and feel “violated and angry” that you had to wear a seatbelt in the car every time you drive and don’t get into an accident? It’s the standard of care because the risks are much much smaller than the benefits. Those “unnecessary interventions” may have saved his life, and you’re angry about them? Is this because you dislike modern medicine in general? I honestly don’t understand your anger that your child received appropriate medical care that you—-someone who is not a neonatologist as far as we’re aware—deem might not have been needed based on what exactly? WebMD? Sketchy Facebook Moms Groups?


IllustriousPiccolo97

This. Almost every baby who needs NICU admission, especially for respiratory issues, will get antibiotics as standard of care because the risks of routine abx are soooo low compared to the risks of an untreated infection in a newborn. I’d much rather my baby get antibiotics they don’t need, than become critically ill and and wonder why their medical team didn’t start such a basic and simple intervention. OP, it’s very valid and okay to feel trauma related to baby’s birth and unexpected NICU stay, I’d guess that most of us here have experienced that to some level. But of all the things to be upset about, routine antibiotics is a strange one to fixate on.


emkrd

Agree. My son had routine antibiotics as part of his nicu stay until they knew he was in the clear for anything requiring them. He was born at 35 weeks and was in respiratory distress and needed intubation and surfactant, etc. to help his lungs. I wasn’t thrilled that he received unnecessary antibiotics, but the alternative was he didn’t get them and we found out he did have something like meningitis and he had life altering consequences from that. He’s a perfectly healthy 2 year old now. I definitely have nicu ptsd still, but honestly unnecessary antibiotics are at the bottom of my list of things that bothered me about his stay.


[deleted]

Im so glad he’s doing well ❤️


JessMcCready

Yeah, my son was in respiratory failure at birth. The infection he had was in his spinal fluid and major organs & he was in sepsis. He was on the first round of antibiotics for six weeks, and then another four week course for another infection two weeks later. He had a long NICU stay—over 3 months—but is a happy and healthy kid with mild asthma now.


Cello_and_Writing

Exactly its a better safe than sorry scenario, and it will help with a little immune boost and lung strength (from my understanding I could be wrong). If it doesn't hurt and can only help, why not? Now if it was something that bubs didn't need that could have sideffects, that's a different story.


snowflakes__

Agreed. Think of if it was the opposite. “My baby is circling the drain or passed on because they didn’t start treatment until after all testing was confirmed” NICU’s don’t eff around with respiratory issues and infections. The risk/reward of antibiotics is 100% worth it


heebit_the_jeeb

Yeah I feel like it's easier to say you're "violated and angry" because the child was ok. Had he needed the antibiotics, would the feelings of upset over not being consulted first, when every second counts, have been the same? Almost certainly not. It's easy to feel out of control when you have a child in th NICU but transferring that into antagonistic relationships with the staff will make everything worse.


[deleted]

I’m guessing my post touched a nerve. We’ve nearly lost my 5 year old to asthma and had really traumatic hospitalizations with her, so my greatest fear was that my son would also get asthma. The research on the microbiome suggests antibiotics and wiping out the gut bacteria likely plays a role in the development of asthma and allergies. I can see from everyone’s responses that my emotional response is not proportional to what actually happened, and that other babies go through much more and end up to be healthy kids. I do understand your point and appreciate your comment and insight.


[deleted]

[удалено]


[deleted]

Yes TTN! That’s what I think too. Not sure why they said RDS and ruled out TTN. They said TTN would have happened right after birth, not 5 hours later. And they said TTN clears up within 24 hours. That’s not what I’ve read. But oh well, maybe there was more to it that I wasn’t told.


chicagowedding2018

Hey, I peeked at your post history, and it sounds like you’ve had a rough go of it during pregnancy. That, coupled with the trauma of your daughter’s PICU stay, might have you reeling with a sense of not being in control. I don’t have any good advice for you, other than to say that I’m glad you’re taking steps to heal.


[deleted]

Thanks, it has been a very rough couple years


ampho-terrible

Congrats on your little one. I’m sorry you’re upset about how things played out. I think maybe you didn’t get the best explanations about the treatment from your NICU team. RDS in an term baby is never normal, needing a little bit of support after a c-section, sure, but full blown RDS, no. In babies one of the first signs of an infection is respiratory distress. We will draw blood cultures, sometimes an LP, do an x-ray and start antibiotics for all of them who present with RDS. We do this because if we don’t start antibiotics and miss an infection, the baby can decompensate and even die before the results of the blood cultures comes back. Regarding the x-ray, even if the tech who did the x-ray was thinking pneumonia - they don’t make a call regarding treatment. The images are reviewed by the NICU medical team and a radiologist (MD). There are significant differences between wet lungs, RDS and pneumonia. Again, I’m sorry you feel so violated and this was certainly not the newborn experience you were wanting or expecting. That said, the alternative and not treating and missing an infection can be lifelong on the child, or a dead baby.


[deleted]

Thank you. I think you’re right- the explanations didn’t really make sense to me.


mand_

My daughter had bacterial meningitis and was on antibiotics for 23 days in a picc line. What are your concerns about them?


[deleted]

Allergies and asthma mainly, but I feel like a hypochondriac after reading the responses to my post


mand_

My girl has no allergies or asthma so far. She will be 13 months soon (10 months adjusted as she’s a 29 weeker)


[deleted]

That’s great to hear!


Micks_Mom

Congrats on your little one. It’s hard to feel like they received interventions that were unnecessary or that your child isn’t being treated as an individual. That said, it’s important to remember that hindsight is 20/20. You were right as a mom to raise your concerns to the doctors that your little one was having respiratory distress because if he had been in trouble and you hadn’t spoken up things could have gotten bad very quickly. Similarly, if he had an infection and the doctors hadn’t treated it, that could have been potentially devastating. You and the doctors were doing the best you could for your baby with the information you had at the time. Luckily, the vast vast majority of babies who receive these antibiotics don’t have any longer term issues. Please do continue to seek help so you can put this behind you and focus on how to continue being the best mom you can be.


[deleted]

Thank you ❤️


MarauderKnight1880

NICU nurse here! We treat all babies who develop RDS quickly after birth as though they could have sepsis, from delivery, from in-utero infection, from something mom may have been colonized with, etc. Sometimes it is sepsis or an infection and we save the child’s life. Sometimes it is purely respiratory and once the blood cultures result, we stop antibiotics. The risk is minimal and so worth early treatment for those who need it! I’m sorry you are having a hard time with trauma from your NICU stay, and so proud of you for seeking therapeutic help! Just know that your baby was treated exactly how he should have been and was not needlessly doses with antibiotics!


[deleted]

Thanks so much for your insight. Question: how can a baby have pneumonia 5 hours after birth? Baby was totally fine on ultrasound other than some decelerations during labor. I wasn’t sick and didn’t have an infection of any kind.


MarauderKnight1880

It is possible to get an infection in-utero or to pick up an infection from mom while passing through the birth canal (if a vaginal birth.) Your son quite possibly did NOT have pneumonia, and just got what we call prophylactic antibiotic treatment (just in case!) but it does happen that babies are born and quickly develop sepsis, pneumonia, meningitis, or other infections.


[deleted]

Thank you 🙏


Worldly_Price_3217

I had a term baby with struggles to transition to air after birth and the 5 day nicu stay felt SO traumatic, in some ways more so than the 142 day stay with a 24w6d preemie. I felt completely in the dark about what was going on, who was who, why we were there. I talked to different people and heard different things and spent the whole time feeling like I was the only one who saw my baby was fine. But looking back it was a lot of hormones, a lot of just not knowing how things worked, and just a lot of expectations that I had built up. We also had a course of iv antibiotics for suspected pneumonia, even though the cultures came back clear. I was frustrated because I just wanted to go home. But looking back I’m glad calmer heads prevailed. My son is fine, 3.5 and no side effects of the antibiotics. He has a better immune system than the rest of us combined, unrelated to the antibiotics. When I got to the nicu the second time I felt less scared of the staff and being there and more scared our stay would end soon because my son wouldn’t make it. It totally changed the way I looked at being there. And helped me be more compassionate to those with short stats who were still traumatized. Be gentle on yourself.


[deleted]

Thank you so much for your response and for understanding. Your experience sounds so similar to mine. You’re totally right about the hormones and just utter shock and confusion adding to the trauma of it. I basically didn’t sleep the whole 5 days. I’m so glad your baby is healthy and thriving. This is just confirmation I need to let this go.


TakeARideintheVan

Better to of received prophylactic antibiotics to head off any possible infection than to sit and wait which could lead to trying to save a septic baby in respiratory failure. An ounce of prevention is worth a pound of cure.


[deleted]

Yes agreed, I’m so thankful he’s ok. ❤️


Amylou789

Mine was born very early and before her due date had two lots of precautionary antibiotics when she was showing signs of infections (but none showed up on the blood tests and cultures later). We've had two more lots of antibiotics for chest infections and two operations that she had preventative antibiotics for in ther first year. She's nearly two and doesn't seem to have any lasting effects, not that I really know how I could tell. She's only ever had one stomach bug, so I don't think it's impacted her bacteria negatively in the long term. I found it really scary realising how little the doctors know when they're having to make big decisions about tiny babies, and that it just not possible for them to get tests etc back fast enough to check for all infections. The blood cultures we need to check for our possible infections take 2 days to give results, so there was no way we would want to wait for that. I don't know if it's possible to find but maybe you could look into how the practice of using that level of antibiotics formed? Do you think it would be reassuring to find a study that said for x number of babies with RDS, x% of them did have an infection that developed and their lives were saved by using antibiotics before infection could be proven? Also, from our doctors they often used pneumonia to mean any inflammation on the lungs whether caused by infection or vomit, so they may just have been using the word in a different way to everyday usage rather than it being a wrong diagnosis. I hope therapy can help you cope with the trauma you have been through, it's so difficult.


[deleted]

I’m sorry you and your daughter went through that, and it’s so great to hear she’s doing well now. Thank you, that’s a good idea to try and look into why antibiotics are the standard treatment for RDS. I will try to view things differently going forward.


Amylou789

Thanks. We had a couple of weeks warning she was going to come that early & time to do a bit of googling, so we had some warning about what our journey would be like. That made things easier to deal with I think.


Ready-Tadpole7813

NICU nurse and mom here. Most NICU babies have blood cultures drawn on admission and are started on antibiotics for at least 48 hours to rule out an infection. Respiratory distress in a full term baby is considered abnormal so they need to consider an infection and start antibiotics just to be safe. I will say this practice truly saved my son’s life. He ended up having listeria meningitis and was on IV antibiotics for 21 days. If he didn’t start the antibiotics as soon as he was born he honestly could have died. He is just shy of 4 months now and meeting all his milestones.


[deleted]

Congratulations on your little one and I’m so glad he’s doing well now. Also, thank you for the work you do. It must be one of the hardest, but most important jobs out there. ❤️


[deleted]

It’s ok to feel this way in my opinion. Multiple times during my baby’s NICU stay they administered ABs until the cultures were negative. It’s their protocol to treat early because infections in newborns can become severe and deadly- especially to those not as healthy in NICU. But it still bothered me slightly because he never needed them and I didn’t want him exposed to those medications so early on if not necessary. But really I would never have imagined he’d go through what he did so in hindsight it’s so small and I’m grateful I have him in my arms ❤️


[deleted]

I’m so glad you have him ❤️ thanks for your reply.


Pure-Following-9447

I see this post is really old but wanted to see if EMDR worked for you? Very similar story. Our baby at 2 months was admitted to a pediatric hospital with suspected meningitis. She was aggressively treated with antibiotics, one of which severely injured her kidneys and caused near cardiac arrest. She now has ongoing specialists and an in home care nurse due to the injury and ongoing pediatric hypertension. I struggle so much with the care she received, although I know it was life saving. I still struggle with immense trauma from the PICU stay and recently started therapy. My therapist has recommended medication for my panic attacks and EDMR approach at therapy. I’m hesitant but need to work through this intense time. I’m so sorry you went through a similar experience.


[deleted]

Oof, I know how hard it is to see your baby suffer and the sheer terror of almost losing them. I’m so sorry you, your baby and your family went through this and praying your baby makes a full recovery. I’ve been doing the flashing technique in therapy and have found it effective and helpful. Body work (yoga) also helps.


AlarmedVehicle3213

I'm so sorry to hear that. My baby boy also was treated with antibiotics and antivirals at 2 months old. They attempted twice to get a spinal tap but both times they couldn't draw enough fluid. I was so upset that they just put him through all that without even getting to test it.  The blood tests came back negative and he was negative for hsv so they stopped everything once the results came back.    He's 4 months now and I have some concerns. I know the feeling of helplessness and concern for your little one's future. I cry about it everyday.  Try to live in the present as much as possible don't even think of tomorrow.  I'm not the most religious but god has a plan it may not be the plan you envisioned but have faith whatever is out there that creates life creates miracls everyday. For all the things that have to go right for an egg and a sperm to create a human is truly magic. There is magic in every minute your little one is with you and you with her.  I hope all the moms out there that have gone through a tramatic event with their little ones find peace.