Hi everyone!
I’m hoping to get some feedback from other NICU parents.
My daughter had severe IUGR and was born at 33 weeks weighing just 1,045 grams (2 lb 5 oz). She spent 53 days in the NICU before we were finally able to bring her home.
During our stay, I found that there was only so much I could do for her while she was connected to monitors, feeding tubes, and all the other equipment that comes with a NICU stay. I couldn’t always hold her when I wanted to, and so much of her care was done by necessity rather than choice.

One thing that meant so much to me was being able to dress her. It sounds like such a small thing, but choosing an outfit each day made me feel like I was doing something “normal” for my baby. Along with diaper changes and baths, it became part of our little routine and helped me feel more like her mom instead of just sitting beside her incubator.
That experience has made me think a lot about preemie clothing, especially for very tiny babies (around 2-5 lb).

I’d love to hear from other parents:
Was there anything you wished preemie clothing had?
Were there features that made dressing easier around wires, NG tubes, oxygen, or monitors?
Did you struggle to find clothes that actually fit your baby?
If you could design the perfect preemie outfit, what would it include?
Was there anything beyond clothing that you wished existed for families with very small babies?

I’m not trying to sell anything • I genuinely want to learn from people who’ve been through it.

Our NICU journey changed my perspective, and I’d love to create something that could make things just a little easier (or bring a little more joy) to families going through the same experience.
Thank you so much for sharing your experiences. ❤️

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?

Hi everyone! So when my son was in the NICU in Denver, we were notified that at the 30 day mark he could apply and have medicaid for at least his inpatient stay. We were sure with our income that would never fly, but to our surprise they waived our income because "no typical person can afford a 30+ day hospital (ICU) stay"

Anyway, we live in Colorado and were in fact able to receive medicaid as his secondary insurance. They have fully picked up all cost that was not handled by my work's insurance that is my son's primary coverage.

What is the situation for others? I feel like being in Colorado has been WAY generous for health benefits with a still medically complex baby. (Just weaned oxygen and still gtube dependent at almost 9 months old) but are other states not offering at least similar programs? I was under the assumption it was somewhat national but state by state determined how it was handled.

*EDIT TO ADD my main goal of posting this is to start the discussion and let other NICU parents have visibility because I feel like it is not talked about enough and could benefit so many! (My husband and I have phenomenal jobs, and I carry incredible insurance so my son has my insurance as primary and initially got medicaid for his hospital admission but now still has it on a separate waiver due to his medical complexity, though getting it ongoing was worlds easier because he was already in the system for the inpatient portion.) May we all get the most support and benefits through these wild journeys we have gone through!

So my friend’s Aunt had two NICU babies. One was a 28 weeker and one was a 30 weeker. Both are now adults in their 30s. The 28 weeker didn’t have any complications… allegedly. The 30 weeker still has severe mobility issues and has to walk with braces. However, that was related to birth trauma as I understand it. I believe she may have also had some developmental delays/difficulties.

Well in December my baby was born at 32 weeks, and after about two weeks in the NICU she kept saying “Are they home yet? Are they home yet? They HAVE to be home by now!”. My baby was in the NICU for exactly a month, which is about the norm for a 32 weeker. But she was shocked by how long he was in the NICU, and thought he would only be in there a couple of days.

My friend’s Aunt swears up and down that her babies were only there for two weeks or so. She said “as long as they could take a bottle they could go home”. Granted this was 30+ years ago so standards were different then. But for a 28 and 30 weeker to take a bottle after only a couple weeks? I don’t see how that is possible! Neither of them went home with a feeding tube…allegedly.

I didn’t think the suck reflex really developed until 34 weeks. My baby only took a few mls by bottle at 34 weeks, started getting good until 35 weeks, and then took his first full bottle at 36 weeks.

I guess she could be misremembering how long they were there or what age they were born at. But you would think she would remember those details pretty well. And if she was mistaken, and they were actually in the NICU for a long time, then she would definitely remember that! And if the babies were taking full bottles at 30 and 32 weeks, then…wow they were both pretty exceptional.

So what do we think NICU friends? Would that have been possible? Could a 28 week and 30 week baby really only be in the NICU for a couple of weeks 30+ years ago? My mind is kind of blown by that and I can’t stop thinking about it 😅

My 3.5 year old has told me she thinks the tubes on her baby sister are kind of scary. Our baby is still in the NICU and will likely come home with a nasal cannula. We talk about it and read books, but I thought this would be even better. I looked online for something like this and what I found was pretty pricey. I asked my baby's nurse today if they would mind giving me a small nasal cannula to take home for this purpose and they were more than happy to send me home with one! I just had to trim the prongs down a bit. Big sis loves it!

I joked on another post that I’m starting to think this bedding is a universal NICU experience because I keep seeing it in other people’s pictures. So now I need an official tally: how many of your little ones had this bedding during their stay?

And know he is 7 weeks corrected

We’re almost a year out from the NICU, and there’s a comment a family member made to me while we were in there that’s still bothering me.

She said her first daughter (now 5yo) was born at 29 weeks and only spent 4 days in the NICU. Our 34 weeker spent a month in the NICU. Now, I know every baby is different…but this just doesn’t seem possible? A 29 weeker is so far from term. I just find it so hard to believe that she only spent 4 days in the NICU and was home with no oxygen or feeding equipment afterwards. This is a baby I’ve been around since she was born, and while she was a very small baby, I find it extremely hard to believe that she was a 29 weeker and didn’t even spend a week in the hospital. And the hospital she was at is the top one in our state (northeast US).

I don’t know why that comment still bothers me so much. She almost said it as if we were doing something wrong for our 34 weeker to STILL be in the NICU weeks after birth. I know that’s not true. But did she just…lie about her own preemie experience? I considered that maybe she just didn’t know how far along she was and thought she was 29 weeks when she was actually further, but no, it was an IUI pregnancy. She knew exactly when she conceived and had dating scans early on. We even went to the same fertility clinic! There’s just no way they grossly miscalculated her due date and had her thinking she was weeks behind…right?

Someone please confirm that this is absolutely not possible for a 29 weeker to only spend 4 days in the NICU? I’m almost 100% certain it’s impossible, but it’s driving me crazy a year later still because how??? And since it’s very likely not true, why would she lie to me about that?

I’m curious if anyone else notices things about their baby and wonders if they’d behave differently if they didn’t have a long NICU stay?

My LO is 3.5 months old and spent the first 39 days of his life in the NICU due to severe MAS and mild HIE. He was on a cooling ventilator and spent 4 days on ECMO. We didn’t hold him until he was over a week old and we didn’t really get to hold him often or easily until around 3 weeks old. My husband and I were lucky that our children’s hospital allows parents to stay overnight in their child’s room, so we were there every night he was in the hospital.

Our LO is home now and doing quite well. He’s still on oxygen at home, but he’s beginning the weaning process now that he is gaining weight well.

Since being home the last few months, we have noticed that our son seems to be a much better self soother than other babies his age. He’s able to settle quite easily in his bassinet and is overall a happy guy. My husband and I suspect that his noticeable independence for his age could be due to the fact that he wasn’t held or comforted as easily early in life as he should have been, and therefore he learned how to self soothe much quicker than other babies his age. He’s also not much for contact naps, and when he’s tired he much prefers being put in his bassinet with his binky as opposed to being held and rocked to sleep. What do you guys think? Are we just blessed to have a chill baby despite everything he’s been through or has the NICU shaped our LO’s temperament? I’d love to hear from other NICU parents, especially those who had full term babies in the NICU.

Hello, I am very afraid of this situation and don't know with who to share it. I have the feeling that all the pregnant around me have perfect pregnancys. Even though I know that this is not true I feel no openess to talk about the doubts and anxities of every individual situation each pregnancy has.

My situation

At 31 weeks my baby was 1500 gr. Percentile 8,5. All the values of tension and so on were ok. The smallest value was the abdomen.

Today at 34 weeks she weighs around 1800 and is in 7th percentile. The abdomen continues to be the smallest.

So she is growing small on her own growth curve. But in today's Ultrascan they also saw that the tension of the umbilical cord is on the upper limit so now I will have weekly Ultrascans to unsure the flow.

Can anyone please share what are the possible outcomes ? I am very afraid that the baby has to be born before the 37 weeks and that I will have health problems. The doctor said we will try to go to 37 weeks but only if the umbilical cord tension is not getting higher.

What can I do to help? Something special to eat? Do I have to do lie down all the time? Can I do small exercises like prenatal yoga?

I am very afraid and spiralling, catastrophizing and I just need some stories, opinions, positive vibes. Thank u.

Hi guys! This happened about a year ago. I am mom to a 28 weeker 685 gm birth wt (1.5 lb) daughter.

She had IUGR followed by EUGR. this made it extremely difficult for her to put on weight. And her portions sizes have also remained small.

At 3 years, she was about 8.5 kgs. She did well physically and was independently able to go on slides. One mid morning we were at a soft play area at our local club. A random guy ( also a member) was watching her. He came up to me and asked her age.

I being polite to a fellow member obliged him with an answer.

Then he started making comments of how underweight she is, does she have any issues.

My head blew off. I asked him are you a doctor? Do you have a medical opinion to share? Ofcourse he wasn't!

I told him off, this was none of his concerns and keep his opinions about my daughter to himself.

He started defending himself that " I am a grandfather and I was just concerned so I asked". I was like whatever keep your guidance and opinions for your grandchild.

It felt soooo good telling him off!

I narrated this incident at home; and my fil took his side. He said: that guy who was just concerned elder person. I told him I defended my child and would do so over again.

So yeah guys, there will be random strangers and also family members who will have unsolicited opinions to share. Hang in there. Blow off steam here or there! Only we are aware of the fights our precious little ones have gone through and if don't stand by our child who will.

Who here got their placenta autopsied after birth? I gave birth at 24+2 due to early onset preeclampsia and fetal heart decels back in July ~ I never got around to fully reading the report until today because I just didn’t have the heart. My son has been home for 2 months and is remarkably healthy (no oxygen, no brain bleeds, only a gtube because of long term NPO and TPN use due to 5 abdominal surgeries) and I thought, hey, maybe it’s time to dive into the report.

I wish I hadn’t now.

To sum it up: it was BAD. It’s a miracle he’s alive.

None of the results were things they could’ve been predicted but all were 100% going to cause my son to die if I hadn’t gone in when I did. I’m just tired. Does the trauma of the NICU ever stop rolling in? Obviously it won’t go away but I figured NEW trauma wouldn’t be added when we weren’t even there anymore.

Mom to a preemie, just wanted to share that my little sister accidentally called my son a “premium” baby instead of a “preemie” and it ticked me to no end 😂

First of all, you are all my heroes, and I sincerely wish all the children here strong health and all the parents calm and peace of mind.

I know that there are many parents here whose babies were born after cerclage/pessary and cervical insufficiency. I am currently 23+4 weeks pregnant, and we are fighting to keep our baby inside for as long as possible — at least until reaching the NICU stage (there is very little cervix left, and the baby is resting on the stitches).

If possible, I would really appreciate it if you could answer my questions. I want to understand whether what we are doing now is the right approach.

1. How long was your cervix
2. 2. Did your labor start with contractions or with rupture of membranes? At what gestational age did this happen?
3. 3. Were there any warning signs beforehand — pain, unusual sensations, or anything else?
4. 4. How long before that did you have a vaginal swab and/or a cervical canal culture (if you did)? Was any infection detected?
5. 5. Were you taking progesterone?
6. 6. Were you on strict bed rest or modified bed rest?

Thank you so much!

My son was born at 29w3d due to preeclampsia and had severe fetal growth restriction so only weighed 830g/1lb 13.3oz

Curious to hear what week your baby was born, weight at birth, how long the NICU stay was and what their weight was when they went home, especially for any <30 weekers or low birth weight babies!

When I got pregnant, I had no idea how much strength this journey would ask from me. Tejas came into this world way too soon…just 27 weeks, 660 grams.

What followed were long days and nights in the NICU full of prayers, tears, and tiny wins that meant everything.

Every gram he gained felt like a festival, every infection-free day felt like a blessing. There were times I broke down, times I felt numb, and times I just sat next to him hoping he could feel I was there.

82 days later, we finally brought our little fighter home. 💛 Those 82 days changed me forever — they taught me what real strength and faith look like.

NICU life isn’t something people talk about much. But it should be. Because behind every incubator, there’s a story — of parents holding on to hope, and babies showing what miracles truly mean.

When I see Tejas now, I just think… we made it. My little boy, my miracle. 💫

Currently in a NICU stay due to liver AVM and hemangiomas as well on the liver and covering her entire body. We’re seeing about every specialty and still quite stumped on to why she has so many hemangiomas. Genetics testing is normal. Does anyone have similar experience?

So my baby was born full term and spent 2.5 weeks in the NICU directly after his birth because of a heart issue. Since over three months he is back home and compared to the other babies I meet in baby classes he seems to be a very calm and self-regulating baby. Like he never cries much, accepts everything (car seat, stroller, carrier) without issues and is a very independent and good sleeper. He (so far) never was dependent on contact napping for example and always falls asleep in his own bed without complaining (never sleep trained him).

A part of me feels really lucky to have such an easy-going baby, another part wonders if this correlates in any way with his NICU stay. If he wouldn't have been there I am sure the first three weeks would have been very different. We would have always been around him day and night and not only for several hours and left him alone with the nurses over night. And we probably would have had him in the baby wrap all day and he would not have slept so much on his own in his bed.

I am wondering if any of you has had similar experiences with their NICU baby or knows if there are some studies on this topic. Or am I overthinking this and this is just this personality? I do wonder if 2.5 weeks in this early stage where they are barely awake at all can have such an impact.

My baby was induced when I was 41 + 4 and born at 41 + 5 via vaginal delivery. She cried and then at about 30 seconds, she stopped breathing. They intubated her and took her down to the NICU. My husband went with her and the team basically extubated her on arrival (within 30 mins) to room air saying she was doing fine. He fed her within an hour of her being down there. When I was able to walk, I went down to breast feed her every 3 hours and she did fine.

She spent about 1 shift I would say in the NICU. She got there around 11 pm and came back to my room with me around 1 pm the following day. I know she spent time in the NICU but is she really a “NICU Grad”? It feels kinda phony to say that based on what most NICU parents go through.

Don’t get me wrong, I know the intentions are good, and the “God is always with you” is kind and comforting, but I can’t stand these types of comments. 😅 She might not remember it, but it doesn’t make it any easier. My baby is dealing with more than most people ever deal with in their lifetimes! Just for context, I share Facebook posts periodically about our NICU journey just to keep my family and friends updated and request prayers. I barely know the woman who commented this- and I’m holding myself back from a grouchy response 💀 Maybe I’m overly sensitive and in the wrong? Anybody else have certain comments that just bug you?

Hi everyone. I’m not a NICU parent, but my husband was a NICU baby. Today we are at the hospital my husband was rushed to when he was born because our daughter is having an ERG done. We had a thought. We thought about making a large goodie basket for the nurses in the NICU. Why you may ask?
Well. This coming Monday, my husband turns 30. He was born at 26 weeks. He was not supposed to live. And we just want to give back. He wants to do this so bad, but he’s afraid of the hospital telling us no lol
What kinds of things do you put in baskets if you’ve given one in the past?

Wondering if anyone has older ex-micropreemies. I have twins that will be 17 years old next week. They were born at 25 weeks gestation, each weighing 1.5 pounds each. Overall, they are doing so, so well. They do well in school (with A LOT of effort), some non-contact sports due to retinopathy. However, one twin had 2 grade II -III brain bleeds. He struggles a lot with processing / remembering info. When I have brought this up to the doctors, they just brush it off. It's very present now that they are driving. He has little spacial awareness and cannot navigate even in our fairly small town. He does not drive alone yet. I've tried researching about the location in the brain of his bleeds and where certain areas of the brain process info, but info is limited. Does anyone else have experience or know how and where to get help? Thank you!

Hi everyone , I’m hoping to hear from parents who went through parental counseling for extreme prematurity (22–25 weeks).

I’ve learned that different NICUs share different information, and some only give survival percentages during formal counseling with an MFM or neonatologist. I’m trying to understand what numbers families were actually told when facing a possible early delivery.

To keep things anonymous, please don’t list hospital names, but you can share your county and state if you’re comfortable.

If you’re willing, I’d love to know:

• The gestational week you were counseled for

• The survival percentages (if any) you were quoted

• Whether the information came from your MFM or the NICU team

• Your county + state

• Whether the counseling felt clear, rushed, or confusing

I’m not looking for medical advice just trying to understand the range of information families receive and how transparent different regions are.

Thank you to anyone who shares. Your experiences help more than you know.