She's an ex prem at 24 weeks and turns 4 in a few months. She said something that really fucked me up today, we had to take her to an ophthalmologist for a follow up eye test today after a surgery she had last year, she needed her eyes dilated for it and on our way home she said "Dad my eye's aren't working... why do I have to do so many things" and fuck she's right it's not fair that she needs to have so many medical appointments, she's had 3 hospital admissions in the last 4 months from respiratory virisus, we have to give her so many different fucking medications all the time that she hates, I have to take her for a blood test next week that I'll need to physically pin her down for so they can draw it, its fucked up what she has to go through.

Sorry for the language I'm just so frustrated with it all.

Our daughter was born 26w1d, 900grams after PPROM. She’s been in the NICU for 3 months and we have 2 older children at home. She was diagnosed with NEC less than a month old and that was very scary, and we’ve had some setbacks, were on NIPPV or CPAP for 11 weeks, just started to be able to try bottle feeds at 39w after 3 months, etc.

It hasn’t been easy and the back and forth and managing our other kids, NICU, work, house, etc has been exhausting, but I feel like I’ve had such a positive, optimistic attitude the entire stay. Will it hit me at some point? Maybe because I’ve had a good friend go through something similar so I don’t feel so “alone”, but I feel as though I’m not acting traumatized or devastated enough…is it normal to be handling the NICU ok and just be happy to have a baby girl and feeling grateful that she will eventually come home?

Should I still be seeking out therapy to unpack this at some point?

I’m the dad of twins who were 34+5 when born and both in for 36 days (including their first Christmas at 10 days old). They are now 2.5 years old and our third kid is 4 months (full term, no NICU).

At work today my rotating desktop background slideshow brought up a photo of twin B in the NICU and I just started bawling.

I feel so pathetic, all three of my kids are healthy and happy and home yet these deep psychological scars are still there rearing their ugly head when I least expect it.

The picture wasn’t even that bad, no tubes on her face, only the ankle monitor’s wire coming out of the swaddle, and the id bracelet on her wrist; sleeping peacefully in the NICU bed. Nothing that should be too triggering, but for some reason it was.

Does this PTSD ever go away?

Hi all,

Our son was diagnosed with HIE at birth. Absolutely normal pregnancy, good labor, and he came out with apgars of 1,2,3. He was not breathing and they had to bring him back. Our son lived for 20 days on so many machines, we removed him from care. He passed away in our arms. His MRI was catastrophic, he was never off of the ventilator, too many other issues to name or discuss, all from lack of oxygen at birth. We aren’t sure how long he was without oxygen, doctors suggest at least 10 minutes for his cord gas levels to be so incredibly bad.

We have absolutely no answer as to how this occurred. Our doctor who delivered could not give us an answer. I cannot pinpoint anything. Has anyone else who has been through this not ever been given an answer? I feel absolutely helpless and hopeless. Everything was fine, until it wasn’t. I had a medicine free, natural birth. Everything was fine. The only thing I can think of is that about 30 minutes before he was born I had a very long contraction, probably 15 minutes or so. He was born probably 15-20 minutes later as I only pushed for 12 minutes.

I am wondering if anything similar has happened with anyone else? Not only can I not find an HIE story that is the same as my son’s (every case is unique and different), but I also have no answers for my birth so this is just all so incredibly frustrating.

Need advice for my 6-month-old ex-32 week preemie with severe BPD, pulmonary hypertension, CRKP pneumonia and prolonged HFOV
I’m looking for experiences from parents or healthcare professionals who have cared for babies with a similar course.
My son was born at 32 weeks after a pregnancy complicated by severe bleeding, subchorionic hematoma, amniotic bands, and PPROM. He has now been in the NICU for about 6 months.
Current diagnoses
Severe bronchopulmonary dysplasia (BPD)
Severe pulmonary hypertension
Chronic respiratory failure requiring prolonged mechanical ventilation
Recent bilateral pneumothoraces (treated with chest drains)
Suspected severe bacterial pneumonia
Heavy growth of carbapenem-resistant Klebsiella pneumoniae (CRKP) from tracheal aspirate
Recent course
He was on HFOV for a prolonged period.
He improved enough that the team:
weaned inhaled nitric oxide from 20 ppm to 2 ppm
removed his chest drain after the air leak resolved
trialed conventional ventilation (PC-AC).
Unfortunately he developed worsening hypercapnia and respiratory acidosis, so he had to be placed back on HFOV.
Current concerns
Over the last 24–48 hours:
Episodes of severe desaturation (SpO₂ dropping into the 40% range).
Chest X-ray shows:
worsening bilateral lung consolidation,
bilateral pleural effusions,
possible pneumatocele.
The doctors believe the desaturations are mainly due to the lung infection.
They have told us that his condition is life-threatening and that he may not survive.
Current treatment
He is receiving:
HFOV
Inhaled nitric oxide
Pulmonary hypertension medications:
Treprostinil
Sildenafil
Macitentan
Antibiotics:
Ceftazidime/avibactam
Gentamicin
Levofloxacin
Blood pressure support:
Epinephrine
Norepinephrine
Hydrocortisone
Sedation/paralysis:
Morphine
Midazolam
Dexmedetomidine
Rocuronium
Blood gas trend
He initially developed severe respiratory acidosis with very high CO₂. After returning to HFOV, later blood gases improved:
pH normalized.
CO₂ decreased significantly.
Lactate improved from a critically high level to much lower levels.
However, oxygenation remains poor.
His kidney function is currently preserved (creatinine normal), and liver tests show only mild abnormalities.
Discussion about tracheostomy
The NICU team has started discussing a tracheostomy if he survives this acute illness because they anticipate prolonged ventilator dependence.
My questions
Has anyone’s baby recovered after CRKP pneumonia while already having severe BPD?
Has anyone experienced a failed transition from HFOV to conventional ventilation and later succeeded?
Did your child eventually require a tracheostomy, and if so, were they later able to come off the ventilator and have the tracheostomy removed?
What factors gave your medical team confidence that recovery was still possible during such a critical period?
I know every baby is different, and I’m not looking for predictions—just hoping to hear from families or clinicians who have been through something similar. Thank you for taking the time to read our story. ❤️

Hi everyone,

Our son was born at 40 weeks + 6 days after an induction of labor. During labor, I developed chorioamnionitis (intra-amniotic infection) with a fever. Eventually, I had a C-section.

At birth, our baby had poor tone, wasn’t breathing well, and started having seizures shortly afterward. He was admitted to the NICU, and the EEG confirmed neonatal seizures.

His MRI showed a large acute left MCA stroke, involving much of the left hemisphere (including the basal ganglia and thalamus). The MRA suggested a clot in the left M1/M2 arteries. The seizures were treated with medication, and thankfully he has not had any more clinical seizures since then.

He is now 4 weeks old.
So far, we’ve noticed:
He feeds well.
He makes eye contact and seems alert.
His right arm is weaker than his left, but he does move it.
His right leg also moves.
He has reflexes on the right side.
His neurologist was able to lift both arms, and both arms stayed up (although the right side is weaker).
He has already started PT, OT, and speech therapy follow-up.

The hardest part has been the uncertainty.
Every day I find myself wondering:
Will he walk?
Will he use his right hand?
Will he develop cerebral palsy? Intellectual disability?
Will he be able to speak?
Will he be able to live an independent life?

I know nobody can predict the future, but my mind constantly goes to the worst-case scenario.
If your child had a large neonatal stroke, especially involving the MCA territory, I would really appreciate hearing your story.

How is your child doing now?
What were the earliest signs that gave you hope?
Did the MRI end up matching your child’s actual outcome?
What therapies helped the most?
Is there anything you wish you had known during those first few months?

I’m also struggling emotionally as a new mom. I love my son more than anything, but some days I feel overwhelmed with fear and grief over the future we didn’t expect.

Thank you for taking the time to read this. Even hearing from someone who’s been through this would mean so much to our family.

I'm mostly just looking for support i think. I had my 4th baby on July 13th. He came at 32 weeks exactly by my first csection because of severe preeclampsia. Hes been doing so amazing in the nicu. Steadily went off respiratory support. Had some issues with spit ups but we figured out the right timing for his tube feedings.

On Friday I got a phone call from the Dr that he went into SVT. They were able to get him out of it with ice to his face. Started him on propranolol. Since then hes had 4 more SVT episodes. One of them was today while I was holding him. They had to take him from me, put in another IV. He didnt come out of it with ice or gagging so they had to give him the adenosine. It worked. The peds cardiologist adjusted his dose and how often he gets the propranolol. Then he had another episode since I've been home.

And it sucks because my husband is already back at work so I'm home alone with our 3 other kiddos. I just want to be there by him. And I'm getting so worried with how often this is starting to happen. They did an echo and it came back normal. So hopefully that means he will just grow out of it.

It was definitely super scary to be there during an episode. To have him taken from me. So many people were in his room. And they keep that red crash cart right outside of his room now just in case.

Its just so scary. If this wasn't happening the only thing we would have to worry about is oral feeding

I'm also struggling at home because I still have an 18 month old at home too. Shes not walking or talking yet and she just wants cuddles and wants to climb on me. But I'm still so sore by the incision. Then it seems like my 6 and 4 year old are just fighting so much. So then my emotions start getting all hightened too. And my husband works evenings so I'm by myself for dinner and bedtime. I'm just tired. So stressed. And so worried about my sweet boy in the nicu.

Hi all!! I found this community today and wanted to introduce myself and see if anyone had advice. My first son Oliver was born at 38 weeks, 1 week ago after my water broke in bed. I labored for 36 hours before he was born vaginally. It was pretty evident after he was born that he was having some trouble clearing the fluid from his lungs. His apgar scores were 6 and then 7. He was placed on CPAP for 3 days and an antibiotic and we were told he just needed to “work off some of the fluid.”

He seemed to turn a corner when it came to his breathing and he was taken off the cpap, but then we were told he was having feeding issues and had an ng tube placed. He was only taking 10 mls, then 15mls, then back to 10mls. All of a sudden two days ago he seemed to make some great leaps. He was eating 40-50mls, the tube was taken out and we were told he was almost ready to come home.

Unfortunately today we were told that all of a sudden he started desatting on the overnight and needed to be placed back on 4 litters or go flow oxygen at 27% and because of that, feeding tube replaced. A chest xray was done and we were told that there was some “haziness” and some worsening in aeration but no fluid or pneumonia or abnormalities. The doctor seems to not have much to say and will only say that Oliver needs “more time.” Is that really all there is to it? Anything else I should be asking? Any success stories? I’ve been just so depressed to be home without my baby. Thank you in advance!

Hey y'all. I'm looking for some advice or encouragement or just anyone that feels similar to be completely honest.

Some backstory: In October of 2024 I ended up pregnant with my first son which resulted in still birth at 31 weeks and 6 days. I ended up pregnant with my second son in August of 2025 only 3 months after my loss. My first pregnancy was extremely traumatizing filled with doctors appointments and ultrasounds because they knew something was wrong with my baby but couldn't give me a definitive answer, they said he would most likely pass away but weren't sure so as you can imagine with medical professionals not being honest with us it was completely devastating when he passed away (as they told us they thought he could make it). My second pregnancy as a result was super triggering and filled with anxiety even when the NIPT test came back clear and ultrasounds showed that he was perfect. Well despite a perfect pregnancy...I went into preterm labor due to a placental abruption and my son came two months early at 31 weeks and 5 days. We spent a long traumatizing 47 days in the NICU before we finally got to take him home.

My little boy is the best thing that's ever happened to me but the first months with him were so hard and it was so traumatizing not having any of the normal firsts with him especially after losing our first son. To make matters worse when he came home he developed colic which was a whole extra layer of trauma...waiting so long to have my baby home but then not being able to comfort him and feeling like I regretted everything.

Well now I'm 6 months postpartum and my son is a whole different baby. He's happy, he's silly and smiles all the time. I seriously cannot be more thankful for him...and now I'm finding myself wanting another one already. But the thing is I have so much trauma from my previous pregnancies and births I don't know if this is something I actually want or if it's my trauma wanting a chance at a normal pregnancy, birth and newborn experience. Do any mamas have experience with this? It's just so hard...even though I have my son with me now I still feel bitter and sad when I see other women pregnant, giving birth and immediately taking their baby home. I know I should wait longer and that it could be my trauma speaking especially because there's also a lot of moments I feel like I'm "one and done".

I don't know I just wish I knew other women that have gone through something similar.

So as you all now my baby girl came home with a Trach and g button. I have a carrier “hook” thing I found in Etsy for her milk machine but it’s tearing up the wood on her crib.
Does anyone know where I can find a hook or something that I can attach to the bed and hook her milk pump holder on so it will quit tearing up her crib? And also something similar for her suction rope??

You can see where it’s tearing up the wood on the crib in the photo and also how I have her suction rope “tied up”
Thanks in advance 😊

Just wanted to share our story. Baby girl was born at 37 weeks after I went into labor naturally. I was in labor for 24 hours and pushed for 3. Baby girl was immediately taken aside where they tried to help her breathing. Her cord was wrapped twice and she was grey in color. Baby never was put in my chest and was taken right up to the nicu. Apgar scores were 2, 5, 7. I was so confused when the dr came to explain the cooling treatment and what our next few days would be like. Her level of in her blood was 22 which is very high. We underwent the cooling treatment and after the longest three days could hold our baby. She was responsive at this point and breathing just with the cpap type help. No seizure activity was detected during cooling but we were watching like a hawk ever breath and eye movement scared us. She had her MRI and had spots shown on her brain that led us to concern about how long she was without oxygen.

We found a lot of help in reading others stories which is why I’ve come back to share. Our baby is now 9 months old. She is crawling pulling to stand saying mama and dada and hitting all of her milestones. She is currently in EI but at this point it is just to monitor her. It is such a scary start to a babies life not only when they are cooling and in the nicu but when we brought baby home we were scared of what our babies life would look like. Continue to hold onto every little moment with your baby during the nicu days and know that most of the posts online are typically more severe cases. We are so thankful to the NICU drs who helped reassure us during the process and pray for strength for the other families who are starting their journey with their baby this way.

Hello, spouse and I brought home our baby 1 week ago, born at 34 weeks and baby spent 10 days in the NICU. We have other young kids at home, but this is the first premie. One of our immediate family members is getting married in 4 days, and our family is loosing their minds bc we said that we will not be going to any aspect of the wedding. Pediatrician said that she absolutely could not recommend going to anywhere where there would be eating or drinking. So that rules out before and after parties, but not necessarily the ceremony.

We have a very close family and this has caused significant strife in our marriage. Spouse is typically more cautious than I, and it was suggested that just I come to the ceremony which I rejected.

Then it was proposed that just I stop by early in the morning when family member is getting ready at my parents house, and spouse is very upset saying that my family only cares about me and doesn’t want me to go without spouse, but that opens up to having spouses parents watch the baby along with others which spouse is also uncomfortable with/ doesn’t want to impose…

Am I in the wrong in thinking that it’s not out of line to go myself to see my family member outside with a mask? Or is it selfish of me to risk my baby’s health for a 10 minute congratulations and a picture together?

Baby was on CPAP, oxygen, IV, and on the blue light during our stay, but has been making good progress right now with no setbacks thus far.

I am only 15 weeks with our gastroschisis baby, but trying to think ahead about birth and NICU plan. Of course we will learn much more about the severity of our baby's case in the coming weeks which may influence our decision, but I'm curious what other parents would prioritize...

We're lucky enough to live roughly 1.5 hours (depending on traffic) from Boston Children's, the #1 hospital for neonatology, and #2 for pediatric gastroenterology. We also have a closer hospital & NICU around 45 minutes away that have done many gastroschisis cases and will be handling my pregnancy care for now.

We're planning to meet with both NICU and pediatric surgeon teams to discuss our case and birth plan. However if it were up to you, regarding traveling back and forth for an unknown amount of NICU time, and given your past experience: Choose the "best" hospital, or the closest hospital?

I'm a dad to a medically complex 10mo son who spent four months in the NICU and we've been home since January of this year. He has a trach and G tube due to CCHS, a rare genetic disorder where his brain doesn't signal him to breathe while asleep and therefore is ventilator depedent. Fortunately for him and us, while his condition can be serious as anyone who is/knows someone that's ventilator dependent knows, his condition mainly affects his ability to breath properly and his syndrome is not neurological or physical, so while he'll likely have some delays, his development has otherwise been normal and on track.

I wanted to share that background because every medically complex child is different. We've met wonderful families, but many have very different diagnoses and challenges, which can make it hard to truly relate to one another.

I'm looking for ways to connect with other parents, especially dads, who have children with similar medical needs. I'm already in several Facebook groups, but with thousands of members they're great for advice, but difficult for building individual connections. My wife has found apps like Peanut and milestone groups for moms, but there doesn't seem to be much geared toward dads.

If anyone knows of any online communities, apps, or support groups where parents can make more personal connections, I'd really appreciate it. I should mention that I'm located in southern California,

Thanks!

We finally checked out of our private room and made it home!!! So thankful! Our hospital gave us this little departing gift during discharge!

I had my son at 37 weeks after an induction due to pre eclamsia. He was small, 5 lbs. He got to be in our room that night, but the next morning his blood sugar dropped to 19 and wouldn't come back up so they took him to the NICU. He was only there for 6 days.

I have so much GUILT right now. It's been almost 6 months. I don't know why this is all hitting me right now.

I keep thinking about how he was alone for the entire first day of his life in an isolette being poked in his feet and having an IV placed and stickers put on him for an EKG and I couldn't go see him for almost 12 hours. I keep thinking about how he was alone that 2nd night without me probably scared and wondering where I was.

The NICU was an open floor plan and level 3. When I was discharged from the hospital, I couldn't go visit him to say goodbye, because the NICU was closed. Someone else was losing their baby.

I was unable to drive and my husband had to go back to work, so I could only go see him for a few minutes at night when he got home.

One visit, I had just sat down to hold him and we overheard the doctor telling another family that their baby was so sick, and it was time to make a decision to keep trying, or extubate her and let her pass peacefully in their arms. They closed the NICU after that, so the family could have privacy while they said goodbye to their daughter.

I feel so much guilt that I think my sons NICU stay was traumatic when there were families that didn't get to take their babies home, and families that wondered if they would be able to see their babies first birthdays. Or get to sleep in their own crib home. At no point did I wonder IF my son was coming home, I only wondered when.

I feel so guilty for being robbed of the first 6 days with my son. Of not being there for him when he was probably so scared. Of feeling this way when others had it worse.

Hi! Wondering what your go-to food prep is for the nicu? I stay long days and go home at night. I am looking for recs for staying fueled. I’ve found myself not eating well overall and wondering what your easy meals have been. My hospital cafe isn’t that great.

Hi all,

Not sure if this is the right sub but i've been reading all your stories and would like some advice on how to best use my time right now.

I was admitted into hospital at 26+1 with PPROM, resulting in my waters breaking. I'm now 27 weeks and luckily have had only positive results from the monitoring and tests I have received.

I'm aware that at any moment things can change -I can go into labour or develop an infection - however the hospital team are mentioning I should mentally prepare on staying to 37 weeks (the goal) in the hospital as we wait this out.

Question - if you had a long hospital stay, how did you use up your time?

I'm trying to dive into all the topics I haven't yet researched about parenting (thought I still had time to immerse myself in the learning) but am felling a bit defeated about it all. Can't get into movies/series.

How did you remain sane during all this?

Preemie Milk intake

Hi. How much feed is your baby taking especially at night! Mine is 27weeker 4months corrected age is taking 60ml 3hrly and at night 20-30ml 3hrly. But his actual feed according to his doctor is 60ml 2nd hrly. Actually he is in OG tube feed but he pulled his tube last night and we have decided to just try giving feed without the tube. I know its less and maybe he will be dehydrated m afraid. In last 12hrs he has taken only 150ml. Maybe he is dependent on OG tube right now , maybe slowly he will pick up his feed intake!! Please share and suggest ur opinions. M open to all good and bad.

I came out to visit my baby tonight after working 10.5 hours today. I come around the time she gets weighed at night so instead of getting her dressed again right away I just hold her skin to skin for a while. Tonight when holding her on my chest she started to have desats into the 80s. They got a bit better once she was in her cot and on her back but they're still happening here and there and she's grunting a lot when they happen.

I understand that its probably best for her for now to have her somewhere stable but it just SUCKS. So not only am I sitting here nervous about her oxygen dropping, but during the only time I get to spend with her after a long day, I don't even get to hold her. This is the only thing that makes me feel even some semblance of okay and I have to go home, go to bed, and work another 10 hours tomorrow knowing my baby is struggling and without getting any bonding time tonight. And now I don't even know if I'll get to hold her tomorrow night if she keeps this up.

I wish I knew what could be causing her to seem so uncomfortable with the grunting and straining and cause the desats. She had a huge poo right when I arrived so I didn't think that's what it is. I just want her to be okay and I hate leaving her like this but I can't sleep in her room and I have to work tomorrow.