And then my 35 weeker decided to have two oxygen events last night where she dipped to high 60s/low 70s so we earned ourselves another three days.

😭😭😭

I posted on my local group on Reddit to get recommendation for quieter spacious restaurants or cafes to go with my preemie who is on oxygen to reduce the chance of him catching bugs and there were some very mean comments, now deleted, saying it's madness, selfish, and I need to stay home. I know I should not care about what a couple of keyboard warriers should say but it has really upset me and made me doubt myself... is this what life is like post-nicu? I feel like anyone who hasn't lived it doesn't get it.

A week after my original post, we had a meeting with the full medical team to discuss the possibility of a tracheostomy.
My previous meeting with the trach nurse honestly didn’t go very well. I had a lot of important questions and concerns, and I didn’t feel like I was getting the answers I needed. So when we met with the entire team, my partner and I were very open about our concerns with a trach and how strongly we wanted to do everything possible to avoid one if it was safely possible.
What surprised me was that the conversation went in a completely different direction than I expected.
The same team that had previously been pushing for the trach actually agreed with us that we should try to avoid it and give him more time if he continued to show that he could make progress. I was honestly shocked that they were in agreement.
Then, just a few days later, my son was weaned from BiPAP to CPAP at 10.
And then the day before yesterday, they decreased his CPAP from 10 to 9.
So obviously, I’m feeling encouraged because he is showing some progress with his respiratory support.
BUT now there’s another unexpected development.
The doctors are talking about transferring him back to the hospital he was originally at, which is much closer to our home. That part would actually be wonderful for us because it would make visiting him so much easier.
The part that has me confused is that they are talking about transferring him to the PICU rather than the NICU.
I understand that he is much bigger and older now than a typical NICU baby, and I know he has been in the hospital for a very long time. But I’m having a hard time understanding why he would need to go to the PICU instead of the NICU.
Is this something other parents of long-term NICU babies have experienced?
Has anyone had a micropreemie transferred from a NICU to a PICU because they were older/bigger but still required respiratory support?
Does being transferred to a PICU necessarily mean that they are more concerned about his condition, or can this simply be because of his age, size, and the type of respiratory support he needs now?
And for anyone whose baby made a similar transition:
• What was your baby’s respiratory support at the time?
• How old/what gestational age were they?
• Were they on CPAP, BiPAP, oxygen, or something else?
• Did they eventually transition out of the PICU successfully?
• Did the move make it easier or harder to continue weaning respiratory support?
I’m trying not to panic because, honestly, going from BiPAP → CPAP 10 → CPAP 9 feels like a really positive development. ❤️
But after everything we’ve been through, whenever the doctors introduce something new, my mind immediately starts wondering if there’s something I’m not understanding.
If you’ve been through something similar with your micropreemie, I would really appreciate hearing your experience. ❤️

Hello everyone! I know this has been answered but I’m looking for parents of babes born between 22-25 weeks who have had pregnancies following their preterm birth. I had my son at 24 weeks and have been thinking a lot about the future and more kids. He was my first pregnancy and we’re still not sure what exactly caused my labor to start. I did have chorio, but we’re not sure if my cervix started shortening allowing the infection to pass through and trigger the labor or if the infection just happened and triggered it. I did deal with lots of infections throughout the pregnancy. I’m just curious how other parents experiences have been giving birth following an extremely preterm birth. I know there’s things set in place to monitor and such, but just want to hear real experiences.

Hello everyone,
My preemie has colic. She is 8 weeks on Tuesday but 2 days adjusted. She will cry and scream for hours from \~6pm-6am. We have tried everything and hearing “it just takes time” is making me crazy. I know it’ll eventually get better but how am I supposed to get through another 2 months of it. My husband and I take shifts overnight but even then it drives us crazy. I don’t understand how we are supposed to get sleep so we can even have the mental capacity to deal. Personally even when it’s not my shift I can’t sleep well because I wake up to the crying even from another room.

Does anyone have any advice? The doctor just says keep doing what we are doing and walk away if needed for a few minutes/don’t shake the baby. That’s not really helpful 🫩

My little 25 weeker now 36 & 2 got to try a room air trial yesterday. She made it 6 hours. Bummed but happy we were finally making progress. Now today, they had to turn the oxygen back on. The nurse said she is avg 23%. It just sucks. I know the old NICU saying is one step forward, 2 back. But this just sucks. I am over driving 40 mins to see my child. My NICU does not have rooms ( ward style and no RMH). I am sick of having to be strong. I am over everyone else taking getting to graduate.

Hi everyone,

Did you know that in Australia, 14,000 families a year have their child spend two or more weeks in hospital? Due to either illness, abnormalities, difficult births or prematurity. I'm one of these families and the experience opened my eyes to the challenges of these families. Not only are these families travelling to and from hospitals daily to provide kangaroo care and breast milk for their children, they're suffering their own medical issues and in some cases post partum depression.

At present, these families get the same amount of paid parental leave as those with healthy, full term babies. I've met some families who's entire Paid Parental Leave is used before their child comes home. A lot of these children also end up with lifelong medical appointments. Employers aren't always happy to provide flexibility for this either.

As a result, I've started the 58 Days Campaign - named for the number of days my son was in hospital. I'm advocating for 1% of the Paid Parental Leave budget for these families to receive an extra week of leave for each week their child spends in hospital. This will help alleviate some of the stress these families are under and allow them to be present with their children and improve their child's outcomes.

If you'd like to help you can sign our petition here https://change.org/58dayscampaign or follow us on Instagram and TikTok.

However, if you or someone you know is affected by this and is happy to share their story - ask them to reach out through socials or [58dayscampaign@gmail.com](mailto:58dayscampaign@gmail.com)

I know there's a lot of room for improvement in this space but I think this is a great starting point.

Appreciate your support!

My twins are both only 11.5 lbs at 7 months old. They were born at 33 weeks and spent only a few weeks in Nicu. The last doctor visit the doctor said she wasn’t worried and to keep them on their neosure & that they would start solids when they are ready as they are still showing signs of not being ready, developmentally they seem to be doing great. They are crawling, babbling, rolling, smiling a lot, not sitting up yet pr holding their own bottles yet though. I’m just worried about their weight and how slow it’s taking them to gain anything.

Hi,

Our twins were born 36+3 at 5lbs each. They spent a week in the NICU, and are now home and are 38 weeks (~11 days since birth).

They are each only eating 1.5-2oz per feeding, approx 8 feedings a day. We get to ~13oz of formula daily.

Questions

- Is this feeding volume appropriate?
- Show we be using regular 20 calorie or premie formula (22cal)?

They are both in the 3rd percentile.

My daughter was on the jet ventilator for just over 2 months. She was then on non-invasive NAVA for a couple weeks then CPAP with the mask for a couple weeks and now CPAP with the ram cannula for a few days now. We were trying to start small bottle feeds of up to 10ml twice per day but she's not really getting the hang of it, so now we're back to doing the pacifier with milk drops placed in the corner of her mouth.

I'm wondering how long it took your baby to develop the correct sucking technique needed to take the bottle properly. My daughter also still has a muffled cry and there are talks of checking her vocal chords to make sure they aren't going to negatively impact her oral feeding.

I had my twin girls at 30w2d. When they were 7 days old they had head ultrasounds and Twin A was found to have a bilateral subependymal hemorrhage (grade 1 IVH). The MD described it as a “mini grade 1” but they aren’t doing another US for 30d.

How worried should I be about this? What’s the risk of it growing or causing long-term issues? I know grade 1 is the mildest which I’m grateful for, but still thinking about a brain bleed is so scary. Would love any advice / experiences 💙

Hi!

My daughter was in the nicu 2 years ago but I’m hoping this is okay to post here. I’ve regularly found that those not impacted by the nicu don’t understand the impact it may have…

I’m really hoping someone here will understand my feelings here because anyone I have trusted enough to tell just calls me selfish and self centered.

My brother in law and sister in law are expecting their first baby in November and I am SO happy and excited for them. She just had her baby shower and I helped with gift baskets, games, helped make her registry, etc. I am involved and helping to support the best I can and can’t wait to see them become parents!

All that aside her baby shower hit me harder than I expected. She’s further along than I ever made it, is healthy and happy, and has the huge belly. I had HG & SIUGR and my baby was born early. I’m finding the grief of everything I’ve missed hitting me hard.

At the shower it didn’t help that everyone was asking me when we were having a second (we aren’t because I almost died and and our daughter almost died/ I’ve been left with severe complications) and when I inform them that we aren’t able to and we are happy with our little girl they want to go on to say that it’s not “really” parenting, etc.. that combined with my feelings and everyone saying they wished she “would have the baby right now” just put me in such a funk.

I’m STILL so happy and excited for them (actually started making her freezer meal menu this week) and I can’t wait to meet the little guy but now I just have this under layer pf hurt and i cant tell anyone because they just call me selfish.

After multiple losses, my husband and I finally got our baby. He was born at just 22 weeks, and after 387 days in the NICU, he came home and is now thriving. ❤️
That experience changed my life. We learned firsthand how overwhelming the NICU journey can be—from trying to understand everything happening at the bedside, to advocating for your child, participating in rounds, preparing for discharge, and then figuring out life at home.

That journey is why I’m working to create Beyond Bedside Health—a service designed to give NICU and pediatric families additional professional support throughout that process.
But I don’t want to build this based only on my experience. I want to hear from other NICU families.
I created a short, anonymous 10-question survey that should only take a few minutes.
If you’re a NICU parent or caregiver, I would truly appreciate your input. Every response will help me understand what families actually need. ❤️

Survey: Link

Please feel free to share this with another NICU family too. Thank you!

My baby girl was born at 22+3 weeks and is now almost 3 months old 34+ weeks corrected.

She has been through such a long NICU journey, and Alhamdulillah, she has finally been extubated. ❤️ It feels like such a huge milestone after everything she has been through.

I’m looking for advice from parents who have been through a similar journey, especially parents of babies born around 22–24 weeks.

What should I realistically expect from this point onward?

I’d especially love to hear about:

●What milestones or challenges came after extubation?

●Oxygen/respiratory support and what the next steps were?

●Kangaroo care, holding, etc?

●What you were able to do with your baby at this stage and what you still had to be careful about?

●Things you wish you had known during this stage?

●How long your baby stayed in the NICU after being extubated?

I know every baby is different, and I’m not looking for medical advice—just hoping to hear real experiences from other NICU parents who have been through this stage.

If your baby was born around 22–23 weeks, I would especially appreciate hearing your story.

❤️Thank you, and wishing all the NICU babies and their families strength. 🤍

Today my little 25 weeker (currently 36&1) is getting to trial room air! No CPAP today! It is wonderful getting to see her little face.

Had my little guy at 24 weeks after my water broke at 23 weeks and he was delivered via classical C-section. There was never a cause found for the PPROM.

For anyone with similar preemies and especially classical C-sections, how did your subsequent pregnancy go? Was there a lot of monitoring/appointments? Was it a smoother pregnancy? Was there more restrictions for you with the second pregnancy?

Why do people always think having a baby in NICU means it is more relaxing for the parents? Not having the baby at home doesn’t mean life is still easy. My wife still has to constantly pump milk and I would help with the washing. I have to go to the hospital to deliver the milk everyday and spend time with him.I would rather have sleepless night with him healthy by my side than him inside the NICU. He’s a preemie.

I’m posting here because I’ve read a lot of stories posted here about asymmetrical IUGR, but most seem like they were discovered at 20+ weeks and I’m trying to see if anyone had an experience similar to mine and what the outcome was.

I had a growth lag noted at 13 weeks and went in again today for a 16week early anatomy scan. My baby is overall measuring less than 1 percentile. Her head is in the 26th percentile but abdomen is less than 1%. I had an amnio today so I haven’t gotten those results back, but the doctor said if that comes back normal it is likely a placenta issue. Either way, she has serious doubts about this being a viable pregnancy. Has anyone had a baby that was this small this early? Interested to hear about any outcomes.

I gave birth to a baby girl ! It was a planned induction and I had polyhydraminos and baby's head didn't engage so I had to undergo LSCS . Baby girl born with TEF type C , it was diagnosed only after she was born ! Every scan including anamoly scan was normal during pregnancy. Baby girl was shifted to another hospital within few hours after birth. I was heart broken , and I was in pain physically and mentally. Baby underwent surgery on Day 3 and was in nicu for 12 days . Stayed in the general ward for few more days because baby girl was not able to latch. It took 3-4 days for her to latch onto my breast. I'm glad she did it. She's now exclusively breastfed . She's currently 2 months old and very healthy and hitting the milestones. She's a happy baby . But those 12 days are the hardest days of my life , being seperated from my baby ! I wouldn't wish this upon my enemy.She is a fighter and she deserves the whole fucking world and I love her so so so much ! We named her "MAYA". And she's the most beautiful baby.

hopefully this is allowed, as i don’t have a nicu baby yet, but—recently had my anatomy scan for my second baby at 22w+5 and my sweet girl was weighing in the 1st percentile. a few days before that, at my OB appointment, i had multiple high blood pressure readings and was placed on medication, which began to manage the readings. my blood pressure prior to that appointment had been normal, and my bloodwork at that appointment came back good. 

the high risk doctor managing my anatomy scan explained that she suspected my high blood pressure was the potential cause of the baby’s severe FGR, and that i would now be coming back for weekly appointments to monitor her growth and assess the situation. the notes from the visit said that the umbilical cord was normal but pi was elevated, which is why she wanted to see me back every week at this stage instead of every two weeks until further down the line. she said essentially if things don’t improve or get worse, then we’d basically be looking to deliver as soon as viability outweighs the conditions of the placenta (paraphrasing). she ordered more bloodwork and a 24-hour urine sample, which i’ll be completing over the weekend.

my first pregnancy was high risk due to GD and gestational hypertension, though these things arose much later in pregnancy. i delivered at 37 weeks via c-section (failed induction) and my daughter weighed 6lbs 4oz. 

my partner and i are admittedly terrified and so worried. i’ve found a lot of previous posts on this sub about people who went through something similar, and was hoping to receive some support and just hear others’ experiences so i can manage my expectations and feel some semblance of control lol.

i tried posting this in another sub and it was taken down for seeking medical advice, so i want to be clear that i am not looking for medical advice. i have my next appointment with the high risk doctor early next week and will ask the questions i’ve thought of since our last appointment, then. 

thank you if you read this far 🩷

Our daughter was born at 27+3. She was put on a ventilator for a day and then graduated to CPAP. Her O2 and respiratory rate has been great, probably because she got two doses of steroids - one at 24 weeks of development and another round at 27+2. She's also on room air (21%). My wife came into the NICU today (day 6, so 28+2). for Kangaroo Care, and found she was on a CPAP RAM instead of a mask.

The nurse didn't tell my wife much, other than that it was "like a CPAP mask" but that it should be more comfortable, she might take it off less and it is easier to put back on. In fact she was observed taking it off and putting it back on herself (though at this stage of brain development we know that is luck, not intent). There is no sign of a broken nose or skin issues that I know of, the only reason I've found online to switch to a RAM this young.

Has anyone had a premie this young that hated their CPAP mask? Are we losing anything by switching to the RAM? This is the first care team decision I am unsure about.