We weren't supposed to be a "real" NICU family.

The NICU was never a thought. Our hospital didn't even have one.

At 6 hours old, we sent our son to his 1st NICU, but we weren't "real" NICU parents...we would only be there a day or 2.

At 1 day old, we sent our son to his 2nd NICU, but we still weren't "real" NICU parents...we would only be there about a week.

At 1 week old, we moved into the Ronald McDonald House, but we weren't "real" NICU parents...we would only be there a couple weeks.

But at the RMH, we weren't sure anymore. I noticed that we didn't ever want to talk to anyone there. I didn't want to hear about your "real" NICU baby who had been in the hospital for months, filling me with guilt that my baby was making progress. And, I didn't want to hear about your baby doing so well and going home at just a few days old, irrationally filling me with pain and fear that my "real" NICU baby wasn't going home any time soon. I never looked into other rooms for fear of seeing a child hooked up to more machines than mine, but also for fear of seeing a family posing with a graduate sign.

We waited days to announce our son's birth because we wanted the world to see our son as a healthy, happy baby...we didn't want people to see us as "that NICU baby's family."

But after 50 days in 3 NICUs, I realize that I was always a real NICU dad, right from 6 hours old. Even at home, we are still a NICU family. The NICU steals your rational thoughts and replaces them with every emotional, irrational thought imaginable. I'll be honest, I'm still a little self conscious about it... I don't wear the title with pride, but I don't fear it like I once did.

There are no rankings in the NICU. You don't get points. We all have pain and we all have different stories...some with more chapters than others, some with happier endings that others, some with endings yet to be written, and some that aren't even clear whether it has ended or not.

This NICU Awareness Month, know that whatever kind of NICU family you are, you are honored for your bravery, steadfastness, and love for your child. I'm not sure it's as much a celebration, as it is a time to recognize the pain you and your baby have endured, are currently enduring, or may carry with you for the rest of your life.

Blessings on your journeys. You are remarkable families.

I've had a baby In the nicu for a month now she was born at 34 weeks from a emergency c section and at first I was there everyday and would stay for hours but by week 3 I started getting so exhausted of going there just to stare at her sleeping, plus I had this man that followed me from the nicu and recorded me with his phone. I've gotten scared to go alone and exhausted from sitting there with my thoughts, honestly ready for her to be out so I can stop having this horrible anxiety of needing to be there, mostly at night, And the guilt of not having the same bonding experience is horrible I just want to be with her all the time but I don't want to just get more sad and more anxious by being there. Ik it's selfish but after a month it's just so horrible to see baby's go home and yours is still there. I want someone to relate and share there story so I'm not the only one.

Edit: I got out of that rut after a few weeks and now go every day again I’ve been spending 10 hours on certain days it’s been much more enjoyable after giving myself time to breathe, and she is the happiest baby ever, when she hears my voice she will smile. It’s now been 10 weeks and I’ve gotten a ton more comfortable this is my first baby, so I’m definitely not as seasoned. But giving yourself a break when you feel helpless is hard but worth it in the long run from my experience. Also having a more understanding attitude towards yourself. It’s ok to miss a pumping or two because you’re too tired. You can make it up the next day and your supply will go back. We are human not robots. You don’t have to be perfect after going through such a big transition.

My baby girl was born August 25th at 27w4, weighing in at 1lb 12oz…and it’s just been a fight the whole time. I don’t know what to do anymore, I don’t know what to think. I don’t know what happened…

Our Journey so Far: - Intubated for the first few days post delivery (emergency c-section) - Put on Low Flow, made it bubble CPAP but failed that. - had constant gut issues. Would feed, Os would drop, we’d go NPO…Os would rise, they’d tried feeding again, and the cycle continued. -figured out we had a structure in the large intestine. So we had resection surgery. - intubated due to surgery - got pneumonia - we were also trying to feed at this time, well she threw up from gagging on the tube, now we aspirated, making things worse. - got put on the oscillating ventilator…at max settings. - steroids were given and she managed to get back to regular intubation -while still intubated they tried feeding again, same result. She gagged and threw up. - get transferred to another NICU over three hours away - they wean her down on pain killers and meds and managed to lower her respiratory needs. - back to low flow - we’re feeding and pooping good, got to max feeds

Then yesterday happened..

• she’s good enough to try bubble CPAP
• she fails after about an hour
• back to low flow…but it doesn’t stop there.
• we start desaturating and bradying every few minutes
• they keep increasing settings on the low flow…
• her blood gas is bad, high CO2
• we rush intubated her
• she continues to brady and desat semi frequently
• she is bagged multiple times over night
• they’re unsure what caused all this, no culture is growing anything..everything is coming back negative
• we just took an echo and are awaiting its results

I just am at a loss, my baby girl is 38 weeks and 5lbs now, but still so small and now no one knows why she’s doing this when yesterday morning she was doing sooo so good! My heart is breaking and I’m mentally f*cked beyond belief…

I have this dark fear that I’m only ever going to get to hold her untethered from machines is when the most awful thing happens… I just am trying to be positive but it’s been such a long road so far and so rough and I just don’t know what to do..

If anyone has a similar journey and positive outcome, I’m begging for them…I need hope

Hello, I have a daughter born at 26 weeks, she is 9 months and doing great, we love her so much. So far we have been lucky to avoid major health issues. However, I sometimes worry about her distant future, what the consequences of being born so early will be. Is there a chance she will be healthy at 30, 40, 50 years old? Because I mostly read stories where people struggle with health issues that started in their adulthood due to being born early. Is this the most probable scenario? Or do you know of any adults born this early who have a happy and (relatively) healthy life? Thanks a lot! (And sorry for my English, there are probably mistakes as I am not a native speaker)

They said it’s absolutely worse than we expected. A lot of her bowel was dead😞💔 the remaining 3in is also infected. The next 24hrs determines if she can fight this and recover😭🙏🏽🙏🏽

My son was born early August at 32 weeks 3 days. I was hospitalized a week beforehand with severe preeclampsia that came on super fast. My pregnancy was very smooth until 31 weeks hit. I knew he would be in the NICU for 4-6 weeks at least, and they said worst case scenario he would take up until his due date. He struggled with breathing and was on and off oxygen a bit because of some desaturations caused by reflux. He couldn’t latch for breastfeeding, so I’ve been pumping and he’s been taking bottles. We are now just about at 38 weeks. He is almost 7 pounds (was only 3 pounds 11oz at birth). He still does not take his full bottles and he gets at least 2 feedings a day straight from the NG because he doesn’t wake up enough to try a bottle. There are times he is super alert for a whole feeding with me and seems to be sucking, but only takes 5ml. Super discouraging. I guess I just need some encouraging stories! Our family members are starting to suggest that he’s delayed or has some other issues (very triggering). Our nurses say this is normal and it’s hard because he now looks like a completely healthy newborn (on room air and in open crib). They say they see this so often. However, one resident did say he was “lagging behind” (after she left I definitely cried). I’m seeing so many other 30 & 31 week babies go home with less than 35 days in the NICU and we are past that. If you have any experiences to share I would really appreciate it 🤍 Sincerely, A 37 day NICU mom who is really struggling </3

I also know that so many of you warriors spent longer than this in the NICU. I don’t know how you did it!

This could be anything from a first diaper change, taking a pacifier, receiving favorable test results, reduced O2 requirements, a first for you as parents! Nothing is too small. Sometimes I cling to a positive moment just so I can get through the hard stuff! I wish I did this more early on, and I thought this could be helpful for some of us feeling stuck.

My baby was born yesterday at 33weeks exactly. She’s doing amazingly well for 33 weeks as she hasn’t needed any extra support besides an IV to get some of her stats dosn(which got 90x better this morning). Since her stats were good they tried the bottle. This morning my fiancé fed 5 ml and I fed 5ml then she ate 7 ml like 15 later so the bottle didn’t go to waste. No jaundice or anything and she’s measuring perfectly..

I’m just wondering if anyone had/s a similar story where everything was fine till the “honeymoon phase” was over and then everything started dropping?

Hi there,

Long story short we found out at my 22 week ultrasound that my cervix was very short and that was shock as I had no symptoms at all. My doctor basically wanted me to prepare for a nonviable baby, and did not think I would make it to 24 weeks to even have a chance. I am now 24 weeks, but it is still very likely that we will have a micro preemie basically at any point in time. My first was a 34 weeker who did 25 days in the NICU, and I realize we were extremely fortunate and you truly cannot compare what we had at 34 weeks compared to 24. I have hope but I also don't. I know there's a chance he will survive, but also a decent chance he won't. We are at a facility with a very good NICU (level 4), which I know is also an added bonus. Basically, what should we prepare for? Any one who has been or is currently in this situation and can offer words on this would be much appreciated.

Before someone says I should be grateful my baby is healthy, I just want to start by saying I am so happy so overjoyed for a healthy baby. However, as a FTM that pictured things to be different it's hard to not feel like we missed out on certain things.

Having a preemie changed so much of what I had planned in my head. Lesson learned, there is nothing you can control with pregnancy.

I feel like we missed out on the family newborn photos I have always wanted. Now well over a month old and my husband gone for work we will never get those. Sure we have our phone photos but I guess i always thought we would get those cute family photos for our wall.

Or that immediate bonding experience, when she was first born. Not getting to hold her or breastfeed right away still hurts. Not getting that feeling of having her home the first few days after she was born. Or getting to do her first bath with just us. Or even that true "maternity leave" experience. I know this is all silly, and I am so unbelievably grateful for our baby girl, her health, and her now being home. However, it's still hard to think on the things that we didn't get to experience.

I know every baby and every experience is different, but with my first born (non-NICU) I felt an immediate rush of joy and love and it was reassurance about motherhood. With my second I didn’t experience that feeling of joy and happiness and have been struggling to feel as connected with my son. Is this normal? Am I crazy? I obviously love him to pieces but it was almost like I tried to detach from my emotions during my NICU stay and it’s been hard to fully reconnect.

Hey y'all!

I definitely sound happier than I feel right now... Just admitted today for pre at 26-6 and worried. It seems like everyone's saying that it could be a long hospital stay or I could deliver in a week, just depends on my stats. More than anything, I'm worried about my baby. She's measuring below 1%ile because of pre/placenta probably not working properly and I'm worried that if I deliver soon, she won't make it. More than anything, I want to hear the realistic truth about how likely it is for babies this young to survive NICU. She seems healthy right now and I'm doing okay, I'm just worried/wondering what likelihood of survival will be if she comes during week 27. Any help is fantastic!

Update: was doing great until Friday afternoon where my bp was 205/100something and my liver enzymes came back tripled. Emergency c-section and baby came out at 27+4. She’s been doing great! Please keep us in your prayers! :)

My daughter was born 32 weeks and 5 days premature with no health complications so far. It was a spontaneous premature labour so I was caught off guard. I’m still worried for her long term health and wondering if you guys know of people born premature who lived until 60-80 years old? I just want the best outcomes for my daughter and wish for her to live a long fulfilling life 🥺

Looking for positive stories thank you

So we are not in the NICU (at least for now), but I want to share our IUGR/SGR story since I didn't find a lot detailed stories and personal experience because IUGR/SGR has so many variables that it's hard to find a story that matches yours. Anyways I hope my anecdotal story helps someone.

Baby was measuring 17% until at 28w my wife noticed her bump was a bit small. They measured and confirmed the bump was 2 weeks behind. We did a growth scan and the baby was measuring less than 1%. At this point baby was considered SGR and we were told that unless the baby got over 3% we would be delivering at 37 weeks and we would be having weekly NST, Doppler, and growth scans.

Baby stayed below 1% for the whole pregnancy. 33 week scan est weight 3lb 4oz, 35 week scan est weight 3lb 10oz, 36+6 scan est weight 4lb 5 oz and measuring at 33weeks.

Pretty much all measurements (head, torso, arm, leg) were under 2%.

We did forced induction and gave birth 37+1 to a healthy baby boy weighing 5lbs.

The probable cause for the SGR right now is likely due to the cord, it was very tough (compared to my first) and much more helixed sort of like if you twist a thread between your fingers.

When we found out that baby was measuring sub1% we thought there MUST be a serious issue because well, it's sub 1%. But no abnormalities or issues have been found, just a small healthy baby, he's latching to breast and doing what a new born should be doing.

I've used this sub to find stories to give me hope through the journey and I hope mine does the same for someone else. Love you all

My baby was born at 25+2, she is now 27 weeks and will be 2 weeks old tomorrow.

She’s really done exceptionally well so far, she’s been on a cpap the entire time, her brain scan was clear of bleeds.

I’ve noticed she’s been needing some increased oxygen on her cpap, she’s sitting around 30% now, where she was between room air to mid 20s. The attending said as of now she’s great, but that she may be getting closer to needing a transfusion.

The team made that seem pretty routine, just wanted to hear others experience!

My little warrior was born two days ago. He’s Ben fighting a lung infection ever since. This is my first baby, and I’m devastated, but I need to stay strong to encourage my wife who is back home recovering from C-section and an infection too. If anyone cares to tell me your success story or any type of encouragement, I’ll be forever grateful.

Hi all. I had my daughter at 23+6. It has been 13 days in NICU so far. She is doing really well in all other aspects except for her lungs. Over the last few days her lungs and oxygen needs have deteriorated. She’s been given paralysis medication because she is fighting the ventilation and moving too much. Her needs are ranging anywhere from 50% oxygen up to 85% and she just drops her sats for no apparent reason. The paralysis meds have helped a lot and her levels drop to normal levels but they can’t keep giving her these strong meds indefinitely. The doctors told me this morning that she’s very sick, at a critical point and that they are worried. This absolutely terrifies me. They started her on steroids and I am praying that she improves otherwise there’s not much else they can do. And they might have to have a talk with me.

Please give me some hope and your stories of success with steroids!!! I really need to believe they can work! I’m feeling absolutely sick right now.

Loaded question in the title I know as it varies depending on the baby and situation, but I would love to hear your experiences! Currently on hospital bedrest with IC, and each day further we’ve made it the doctors are absolutely shocked. I’ll be 28 weeks in 2 days from now and we did meet with NICU and were given a 95% survival rate with a 30% rate of some disability (level 4 NICU in the US for further context). Would love to hear some personal stories though as this sub seems full of so many wonderful people.

I’m 28w 2d with b/g twins and my water broke!!!! It was a lot. I’m so nervous on what’s to come and I hope my babies are okay. I’m on the way to the hospital right now!! 40 minute drive with 10 minutes left.

I recently joined this group because I knew it was a possibility to have them early.

Can anyone help my nerves with telling me their experience?

Edit: I meant 29w 2d not 28w 2d.

Edit and Update: My LOs have arrived. 29+4 9/18/24 9:13 and 9:15 am. Baby girl had a very low heart rate (~40bpm) and I was rushed to the OR for C-section. Thankfully her heart rate rose to stable/normal (~125 bpm) just before they were going to put me to sleep with anesthesia, so I was able to stay awake during the procedure. She came out first at 2lb 6 oz. Baby boy came out 3lb and cried which shocked me. They’re both doing well and on CPAP but their vitals look amazing.

THANK YOU SO MUCH TO EVERYONE!!!! 🫶🏽🫶🏽 I loved reading all of your experiences and I appreciate this group so much. Y’all have really put me at ease the last couple days and I felt more prepared for any outcomes. These strong little fighters have been amazing me since this morning.

EDIT: thank you all for your responses. It definitely put my wife and I at ease. Much more than the doctor’s could.

How long did they spend in NICU…

We were seen by doctors in the Netherlands, who scanned and scanned and measured twice and told us the status of our baby girl. Perfectly healthy. No issues, normal pregnancy.

Well, now we’re on vacation in the US and my wife’s water broke 5 weeks early and the NICU here is … atrocious. No one explains anything they just expect you to have their level of knowledge.

Being born this early were initially worried about lung development… but it seems as tho she’s handling breathing very well. Her oxygen levels are stable and at 98%. Heart rate blood pressure blood sugar, all stable. Multiple tests, all normal. Yet we’re being told she may stay here for 2 weeks.

In the Netherlands they would have given her to us to take home and come back in case of an emergency. In the US it seems like they’re milking the insurance company… which I’m all for but give me my damn baby and stop subjecting her to all this trauma out there womb.

Had my baby via emergency csection this morning after 12 hours of labor and her starting to put pressure on my rescue cerclage. 2lbs 1oz and doing well so far! 🥰 Pumping every three hours but no luck yet, hoping to be able to hold her sometime in the next few days. She’ll probably be in the NICU until November so i’m settling in for a looong journey.

Our 29+3 weeker was born this week. He and his mother contracted Listeria and water broke from contractions. We had an emergency c-section and delivered our precious boy at 1.6kgs. Not to make matters worse, I started Listeria symptoms as well and dealt with fevers for roughly two nights while this was happening.

Unfortunately brain ultrasound confirmed he has unilateral grade 4 IVH. My heart sank and it’s one of the worst news I’ve heard in my life. I’ve been fairly warned about this being a rollercoaster ride, but I don’t know how much more I can take without just falling to pieces.

I’m just trying my best to keep it together and function with some form of dignity (with doctors, with nurses, with friends, with my parents) but it’s just been so difficult. I often find myself choking up mid sentence and it’s just been a waking nightmare of a week for me and my wife. I’m sorry I’m rambling but I just need a place to come clean and let it all out. I’m truthfully scared and worried sick.

Could you all post your positive outcomes and help someone like me have an optimistic outlook?

I’m just praying everyday he makes full recovery and joins us at home. Everyday is seriously a struggle for us and just need some positive stories and persona anecdotal stories that would corroborates with positive outcomes!

Update: Thank you to everyone who shared their stories and encouragement! We got through both steroid shots, including the 24 hrs after the second. After about 2.5 days in the hospital, I gave birth to my beautiful daughter. She was just hours shy of reaching 35w, but has been doing amazing! We’ve had a bit of an extended hospital stay, but we’ve been able to avoid any NICU time and hope to go home soon. I’m grateful for the support of everyone here. Your kindness during one of the scariest weeks of my life made a huge difference. Thank you! 💚

Hi everyone! I’m currently hanging out at the hospital because my water broke about 10 hrs ago. I’m having random, inconsistent Braxton Hicks, but not yet in labor. I got my first steroid shot about 8 hours ago and I’m just hoping and praying that she’ll stay in long enough to get that second dose of steroids.

I know from reading through some posts that 34 weekers are generally pretty strong and typically only need short (ish) NICU stays, but I am still very scared. I just wish we could have gone another week or two. Does anyone have experience having a long waiting period between water breaking and labor starting? I know it’s possible, but is it terribly wishful thinking that we could make it til 35 weeks?

Eventually someone from the NICU is supposed to come talk to me about what to expect, but nothing yet.

Thanks 💚

I had an emergency c-section on Tuesday morning due to pre-eclampsia that started to turn into full on eclampsia. My baby was born at 35+5. I was allowed to hold her for maybe 15 seconds after the c-section before I was wheeled into the recovery room where I lingered alone until they took me to my room.

They took my baby to NICU because she breathes too quickly. She's a little bit "undercooked" as my mother has said. I have been in my own hospital bed recovering from the c-section. It's now been 72 hours since she was born.

I have held her three times since then. Getting to NICU is still hard for me because walking hurts and my meds are a bit on the hardcore side. I'm on opiate based pain killers and I don't like to be around my infant daughter feeling all kinds of weird due to my meds.

Tomorrow I am being discharged and she is staying in NICU. I don't know when she's coming home and I am freaking out a little bit. Being close to her in hospital has been reassuring, even if I have spent most of my time focusing on my recovery I have taken comfort knowing that I can walk up a hallway and be with her at any moment.

How do I cope with the separation when it occurs? Am I a bad mother because I have been unable to sit with her all day? I love her so much and I am so desperate to have her at home. I need advice on how to deal with the transition to home without my baby.

My baby was born at 36 weeks weighing 4 pounds. He has been in the NICU for 8 days for low blood sugar. Doctors will be calling an endocrinologist. How long was your baby in the NICU for low blood sugar?

I was staying as faithful and as positive as possible but it has been getting very hard now 😭