r/NICUParents

I’m the aunt of a precious little baby boy…. I actually joined this group the night he was born. It was a very scary time.

My SIL went into labor at 23 weeks and 2 days, due to cervical dilation. Unfortunately, she was beyond the time for any stitching to help delay the labor process.

This baby was a little warrior. He survived 9 weeks & a few days.

It’s been devastating. While he had some ups and downs.. he was progressing. He was intubated at birth and after about 5 weeks they were able to change him to cpap. He was doing so so good.

Throughout his stay he had some setbacks- he had grade 3 brain bleeds but continued to remain stable, but high on the watch list. He had some clustering of the vessels in one of his eyes- they were also watching and had a plan for injections as he grew. Most notably, he did have back and forth issues with his little gut. Early on they performed a bedside ostomy. He did have a pretty bad week where he ended up having a blockage in his small bowel. They were able to do an enema, stop feeds, and allow his little bowels to rest. As time passed, he continued to just grow. He was active, he would cry, he would blink and just look around. His mom and dad participated in so much of his care every step of the way.

Until the unthinkable. They visited him Saturday morning, all routine, spent time, held him, prayed with him… and left later that morning.

They received a call later in the evening that was the start of the most devastating day. They emergently placed his piccline back & reintubated… after a blood transfusion and a series of X-rays they found NEC. From there everything was and has been a blur. He passed away 24 hours later and our entire worlds are shattered.

This forum was always a source i would read and learn so much about so many incredible stories, diagnosis, prognosis, everything.

I’m heartbroken & just at a loss. So many of you have always been on my silent prayers.

I’ve made it my will to learn as much about NEC and be part of the greater good… in hopes that this awful process has a cure one day and/or far better outcomes across the board.

😭

29m, 23f. Dad typing this.

How the hell are we supposed to do this?

Moms water broke 5 months early, baby was born 4 months early. Our baby just got promoted to ITU after 9 months. He's got Agenesis of the Corpus Callosum, a trach and vent with high settings, a g tube. He's almost died in our arms more times than we care to count.

My wife lost her job (wasn't at her job for a year so she couldn't get FMLA or what ever), dropped out of her undergrad (was going to become an OBGYN). Her education may have been a complete loss. We don't see it working out.

I work remotely but I don't know for how long, it's very demanding work and they may require me to go back to office (it's okay pay but not nearly good).

Fiances are so stupidly horrible. Cards maxed, pulled out equity on the house due to a tornado. Medicare or Medicaid which ever the fuck it is, is fucking us around on hospital bills which is just A HASSLE. Because of fucking course. An uninsured driver hit our safer car and straight up said he isn't going to pay and it'll take fucking months to get money from them if we even get anything. Will more than likely foreclose on our home that can't sell (we have dropped the price 50k below the appraisal, we will lose the 100k I got from my dad's will that I put down on the house)

To get out of ITU we need to take classes on trach and vent stuff, have a home with specific things, have 2 nurses at home for him so he will get 24/7 care. Don't know when to find the time for the classes when I work, I can't lose my job because then we won't have a place to fucking live so they won't fucking release him.

We don't know how we can afford a therapist or antidepressants. If those even work anymore. Our mental health is in shambles. We have gone through horrible nurses, horrible doctors, lack of care, and terrifying nights. We nearly lost all our friends moving to the city where the ONLY hospital in the state can care for him.

How the hell do people do this? How are we supposed to make this work? Tomorrow we have a meeting with the team about some things we need to accomplish before we can think about home. But what home? What life? What money to pay for food?

There's no right answers, family and friends don't have advice. No one in our life deals with this to any extent (thankfully, I wish this on no one). I've been told to let him die, to foreclose on the house (how will I rent a place if my credit is shit? Then I can't take him home), to rent it out, get a second job and her get a job, , how will we take the classes? How will we find nurses in a nurse shortage? Some nursing agencies won't even watch him because of the vent.

I'm tired. I'm ranting. There's probably so much I've left out. I'm sorry. It just feels impossible. We get a sliver of good news and a buffet of bad the next day. It's always fucking something. I'm so lost.

My son is cute, he's smart and responsive. He's worth it. He is strong.

Edit: Thank you everyone so much for your replies. For some reason, posting triggered me to cry which I haven't done since finding out about the funneling at 20 weeks. I've just been in an anxiety loop and spiral. I took a few hours so I could reply sensibly. For those asking about his size - we don't have full information. At the anatomy scan, it seemed like my MFM was flustered and I think she forgot both to give us the photos and send along the measurements. I've called the office to ask and am hoping they will be sent soon. I do remember her saying that his head circumference was around 67% and abdominal circumference around there but I don't know weight...

Hello everyone,

I hope it is ok to post. For background, I am currently still pregnant - 21+1, but with strong likelihood of delivering in the next few weeks.

I had a preventative cerclage, a TVCIC, put in at 12 weeks after a loss due to incompetent cervix last year. Unfortunately I funneled through that stitch at 20 weeks and had a second rescue McDonald stitch put in 6 days ago. I have healed from surgery and am on home bed rest but we don't have a real idea of how long the second stitch will hold. My OB didn't want to check yesterday for fear of irritating it.

My question for this community is: why on earth is it so hard to figure out which hospitals in your area will resuscitate at 22 weeks? I found the map on the 22 weeks matters website and see a children's hospital in the area on the list and another hospital in my city that my OB does not deliver at.

The hospital where I would deliver has a Level IV NICU but is not on that list. In 2026, should I make the assumption that a level IV NICU in a major metropolitan area WOULD resuscitate at 22 weeks? Why would they not explicitly state on their website the weeks at which they would care for preemies? Why is this information so hard to come by absent actually being in the hospital and talking to the NICU team?

I have another appointment with my MFM on Monday so I will ask then. But both my MFM and OB currently have this attitude both of we don't know when you could go, possibly at any time, but also try to stay positive, baby could be in there for weeks.

Really hoping this baby stays cooking until 24 weeks but just frustrated by lack of information.

This is my third baby, but we’ll be inducing at 34.4 due to PPROM.

For moms with multiple, how fast was your induction ? I’ve heard the third is a curveball but I’m curious to hear from you guys. My OB thinks it’ll be a fast delivery (especially with the PPROM and being at least a .5 cm dilated since 29 weeks)

Hey everyone. I was born in early 2000s, a former micro-preemie (26w, 900g) and I'm 23 now. I know a lot of parents on here are scared, and it’s a day to day struggle in the NICU, and I wanted to be honest about my experience, and share how things turned out long term for me.

My health journey hasn't been totally flawless. Everyone thought I was fine for a long time because my needs were managed well, but I have struggled with lifelong limb/joints issues that were undiagnosed in childhood, no doctor could figure out why, but with advances in medical field all the time, currently specialists hypothesize it might be due to a genetic cause, or mild CP. I can walk, and even run, but experience significant pain, trembles, and lifelong exhaustion from movement. I often use a cane of some sort now as an adult to manage it. I was also diagnosed with medium-need autism, which doctors said is a direct result of being a preemie. And I have fairly bad eyesight (around -5 approximately) which requires prescription glasses since I was around ten years old, which I was later told by my parents they expected this because of the unregulated oxygen level coming straight out of the wall in NICU, and that I was quite lucky to see.

I’m not posting this to scare anyone, but to give some big picture perspective. When you're stuck in the NICU, it feels like they’ll be a baby forever. I also want to mention it is not same for all babies, some will end up perfect and others more unfortunate. It’s scary and unpredictable and I recognize mine is one outcome among many possibilities.

But if any micro-preemie parents want to ask questions about what it was like growing up or what helped me as a kid, feel free to ask. I put “reasonable” in the title as some questions might prove too sensitive or private due to the nature of this topic, but I’ll happily answer most questions.

Sending love to everyone struggling right now.

My baby has come home from nicu and we are working on breastfeeding. I am very lucky that even at 34w he took to it relatively well. He instinctively knew how to latch and the main issue was stamina. Well now he’s almost 37w and I feel like we’ve regressed. Based on nicu recommendation we do a mix of paced bottle feeding and breastfeeding. Over the last few sessions, he’s immediately latch and fed for 5 mins. Then he’ll unlatch, I’ll try to burp him though he really doesn’t burp and then try to relatch. He’ll root like crazy but even when he gets the nipple in his mouth he rejects it. I’ll try for a bit but then use my 16mm nipple shield I was given at nicu. I really want to get him away from the shield and I don’t know if I should just cut him off cold turkey or what? Wondering if anyone else has experienced this!

I'm so sick of sitting around in hospital rooms not knowing if the doctors will even have answers this time.

After 85 days in the NICU, my ex 27weeker came home, and I thought all the medical shit was behind us.

After dropping from 65% down to 10% in weight in 2 months, we were readmitted for a few days, then discharged with a GERD diagnosis, new meds, and an NG tube. In the 2 weeks she had the tube in, I had to replace it FIVE separate times, 3 of those all in the same day while my wife was at work and I was home alone with both our baby and 4 year old. Placing an NG is hard enough with another adult there to help hold and distract the baby. By yourself, while your baby is crying, and you're crying, and your other kid is sitting in the corner of the room with wide eyes, looking absolutely traumatized. That was horrible.

On top of all that, at our next weight check, we found that she'd only been averaging 6g a day since getting the tube placed, whereas before she'd been closer to 15g a day.

So the dietitian had us pull the tube and switch fortifiers for what seemed like the hundredth time and start using an SNS. Her violent vomiting stopped almost overnight, going from 3-6 times a day to less then once day. And in the following week, her weight gain jumped up to 22g a day, only 1 gram short of what they'd consider ideal for her age. And for a brief 4 days, I felt like I could finally just be her parent, not worry every hour how her next feed would go or if she'd actually gain weight that day.

Then this past Saturday, she threw up while laying on her playmat. I went over to clean her up and her eyes were wide, her mouth still open, looking like she was gagging, but not making a sound. Her face started to turn red, so I picked her up, and she started coughing up thick mucous, then started crying, a much better sound then the silence a few seconds earlier. There was no labored breathing, no lingering cough, and she was back to her usual smiley self within 10 minutes.

The same thing happened on Sunday morning. Sunday night, while changing her diaper, it happened again, but this time, even after I'd picked her up, she still wasn't able to cough it up and her face had turned purple, so I flipped her over to gave her two harsh back blows before she threw up more and started screaming. Me and my wife debated taking her in that night, but again, she seemed totally fine within 10 minutes, so we agreed that if it happened again, we'd take her in then.

Monday was uneventful. Tuesday, it happened again where I had to give back blows before she started breathing/crying again. My wife was at work with the car, so I called the pediatrician and they said to call 911 if it happened again, but since she was still recovering quickly after these events, they felt I could wait to come in for an appointment that evening when I'd have a car to get there.

At that appointment, they suggested scheduling a swallow study and possibly getting in with an ENT depending on the results.

Tuesday night through Wednesday afternoon, we had no issues. But an hour after her 5 o'clock feed on Wednesday, she was getting fussy on her playmat, and I went and picked her up. She threw up all over me, soaking through my clothes and underwear and making a puddle on the floor. Her face started to change color, I turned her over, gave back blows, she started crying. As soon as I turned her back over, she started choking again. This repeated twice, and my wife had her phone out to call 911 before baby girl started and continued to cry as I held her on her side.

The immediate danger gone, we got her in the car and drove her to the ER. They did an x-ray of her lungs to make sure she hadn't aspirated a large amount, then an x-ray and ultrasound of her belly to rule out pyloric stenosis or any other blockages. All came back clear, but they decided to admit us overnight for observation and wait till the speech therapist was in the next day to do a swallow study.

So here I am, sitting beside a hospital crib once again, waiting for answers that may or may not come.

I feel lucky that so far anytime she's choked, I've been right there. But I know it will only take one time of me not being there (or being fast asleep) for it to be catastrophic.

She hasn't had any events while we've been here, and they've said that after the swallow study, they'll probably send us home tonight. And I'm worried sick. I ordered an owlet for same day delivery because I just cannot handle something potentially happening while I'm showering or napping or some shit.

I'm so frustrated and scared and feel all around awful, especially because I know my 4 year old already is feeling a bit side-lined not being the baby anymore, and with all these doctors visits and health scares, it's so hard to make time for him. And luckily my parents live with us and he loves hanging out with them both, but they also work, so most of the day it's just me him and his baby sister. And I miss taking him to the park and pool and cuddling and reading books at night.

I was SO excited to be a family of 4, but everything since the start of my pregnancy has been one nightmare after another and I have no clue when I'm actually going to be able to enjoy being a parent again.

Am I the only one who occasionally checks their sleeping child just to make sure they're still breathing? If she was still a baby it wouldn't seem weird to me. However my daughter is 8yrs old. She did amazing in the NICU and is a perfectly normal healthy happy girl, she didn't have any long-term issues due to her very early birth. Sometimes before I go to bed I'll crack her door look in and wait a moment to make sure all is well.

I am a newer NICU nurse with about 6 months of experience. I am so grateful to be working in the NICU- it’s my dream job! It is a true, wholehearted privilege to be entrusted with the care of your sweet baby/babies. I hope it’s alright that I popped into this subreddit to ask this question.

For context, I work in a level 3 NICU, and so I work with children with a wide range of conditions, but are typically not in very critical condition. If we have a more unstable baby or a baby who requires greater medial needs, they will usually be transferred to a level 4 NICU from our NICU. That is not to say that we do not have very ill babies on our unit. But often, they are on the way to going to a step down unit or even discharging home. I see babies who are working on eating whole bottles and babies who can only eat through a feeding tube or cannot eat at all (IV nutrition). Like I said, a pretty big range of conditions and acuity.

I have seen different nurses give updates differently especially over the phone. Many nurses start by saying “they are doing well…” which is usually true in our eyes. Sometimes I wonder if this can seem falsely reassuring or misleading. That statement typically means, at least to me, that they are stable and without changes from their current condition, maybe even seeming content or just overall having a good day for them (no signs of pain/discomfort, no events, no vomiting, no unexpected things, etc.). After this statement, most nurses continue with more specific information about baby’s day/night and their current vitals or updated weight and might further clarify what their version of “doing well” means.

How do you prefer to receive updates? is saying that your baby is “doing well/good/great” too flippant or does it negatively affect your trust in us if you see that your child is still experiencing expected symptoms for prematurity, feeding intolerance, etc.? Would you like us to be more detailed, or less detailed? What do you always want to hear, and what are things you don’t usually want to hear in your updates?

Many times parents ask for updates in a way that is open ended. “Hi, I’m just calling to see how _ is doing.” which is fine, but it does have us lead with our own perspectives of our shift so far with baby. Sometimes I am unsure if you want to hear if your baby has had multiple events if that is common and expected for them recently. I am unsure if you want me to tell you that they pooped a lot and now their bottom is a little more red than before. I am unsure if these details are too much or unnecessarily stressful. Of course, I will always share big changes (or your provider will) with you in earnest and answer any and all concerns to the best of my ability.

When I speak with you about your little one, I want to be optimistic and hopeful with you. I want to share your excitement over all the little and big victories. But I also want to mindful of giving you realistic and honest information.

Please share your thoughts in this if you are comfortable. I am always looking to make your and your baby’s stay in the NICU as comfortable and safe (and as short!) as possible. I want to be a nurse you can trust and that you feel comfortable with caring for your sweet baby.

If you’re a NICU parent reading this, I wish you and your baby/babies nothing but the best. I’m so sorry you have to be in the NICU. You are so strong. I’m cheering you and your little one on!

Of course I love them both, but I’m sitting here pumping and tearful before they wake up.

I was out on bedrest at 22 weeks. I had a c-section at 35 weeks, and they were both taken to the NICU immediately. I didn’t see them for hours. Didn’t hold them for days. They were in the NICU for 34 and 52 days (which I know compared to many isn’t nearly as long), but prior to the c-section so many people on my medical team made comments about how babies born at 35 weeks often don’t need any NICU time, so I really wasn’t mentally expecting stays of that length.
When they were discharged we had medical equipment. We were averaging 4-7 appointments per week. They’ve each had surgeries. A year later, and we’re still probably averaging 3-4 appointments per week. There have been so many specialists. I couldn’t even begin to count the number of medical appointments I’ve been to this past year (plus during my high risk pregnancy).

Of course I love them both. It’s not a lack of love for them, I just feel like their first year was kind of…cheated? My spouse has been an amazing parent the past year, and we’ve largely done it together just the two of us because we have no family within 1500 miles of us. Now that we’re at their first year I feel like I just keep thinking of everything that happened after their birth rather than just sitting here in excitement.

Hi everyone,

On 14th August, our little girl decided she was ready to meet us 11 weeks early, at just 29+5 weeks. It was obviously a huge shock, and my wife had to have an emergency C-section.

She’s now in the NICU, and thankfully the first five days have actually been really positive. Every time we’ve visited, the nurses and doctors have been happy with how she’s progressing, and we’ve been slowly starting to feel a little more hopeful and settled into NICU life.

However, today our consultant told us that a scan had shown a Grade 4 intraventricular brain bleed on the left side of her brain.

Obviously, we’re absolutely terrified. We’ve been told that they’ll monitor her very closely and that she’ll have regular scans to see how the bleed develops, but right now there’s obviously a lot of uncertainty and a lot of questions going through our heads.

I was wondering if anyone here has been through something similar, particularly with a Grade 4 bleed? If you’re comfortable sharing, we’d really appreciate hearing about your experiences, what happened with your little one, and anything you wish you’d known at this stage.

We know every baby is different, and we’re trying our best not to look too far ahead or assume what this means for our daughter. We’re just trying to take things one day at a time.

Thank you to anyone who takes the time to read this or share their experience. ❤️

My daughter was born at 22+3 weeks and she is now 28+3 weeks. We have been trying to establish feeds, but unfortunately she hasn't been tolerating them well.

This has happened around 3–4 times now. Whenever they try to start feeds, her tummy becomes distended, so the feeds are stopped again. She has had periods where they’ve tried feeding again, only for the same thing to happen.

I know every micro-preemie is different, but I’d really appreciate hearing from parents who went through something similar.

Did your baby also struggle with feeds in the beginning?

What did the NICU team do when the tummy became distended?

How long did it take before your baby was able to tolerate feeds?

Were there any things that helped your baby eventually progress with feeding?

I’m especially interested in hearing from parents of babies born around 22–24 weeks, as I’m trying to understand what others experienced and what the feeding journey looked like for them.

Thank you ❤️

My son had a MRI to determine if he’s a candidate for cochlear implants ..we received results and he is a candidate but also the report states there was other findings

“few scattered foci of susceptibility in the right occipital lobe consistent with sequela of remote hemorrhage”

My baby was SIUGR born 37 weeks when induced. He was 4.14lb and didn’t have to stay in NICU. Now I’m spiraling because how could this have happened?
How common is it with small preterm babies?
How was it’s missed?
He’s never shown signs of anything that I’ve noticed?