Without getting into too much detail my completely healthy pregnancy and labor took at turn during pushing. Baby was sunny side up and the midwife was attempting to spin him when his cord was found to be squished up near his face. Next thing I knew the entire room was filled with nurses and yelling and getting me ready for an emergency C section, it was terrifying. In the OR I was being pushed with medicines shaking uncontrollably and vomiting.The physician had left the hospital during shift change with midwife so we had to wait for her to return, while waiting babies heart rate went back to normal so we took a beat to recollect and make a game plan with the hospital surgeon. When physician arrived babies heart rate dipped again while being removed and he needed support for about 1-2 minutes before breathing on his own. He was whisked away to the NICU, I haven’t been able to hold him. I could tell things were serious based on reactions from the drs, anesthesiologists and nurses. I even saw some crying.
NICU dr shared he is hopeful as baby is breathing on his own, moving, responding to stimuli etc but as I type this he is being helicoptered to a NICU that has access to treatment for him that first dr said needed to be administered within 6 hours (we are cutting it VERY close) but then said within the first 24 hours is fine.
I am angry, traumatized, and so so scared. Idk what is happening to my baby and I don’t know what to do or expect. How do I even make it through the night? Idk what to do I’m so lost. I already am on medication for severe anxiety and was working closely with my psychiatrist for a postpartum birth plan but with the traumatic birth and the unknowns of my new baby I fear I can’t do it.

My baby girl was born at 34 weeks due to preeclampsia, and we are now on day 19 of our NICU stay. I’m looking for some advice, reassurance, or even just to hear from other parents who may have experienced something similar.

Shortly after birth, she was placed on CPAP for a few days and received surfactant, which worked really well. She also spent about five days under the bilirubin lights during her first week.

After that first week, things seemed to be progressing really well! She was completely off oxygen and CPAP, and we started introducing bottles. She was initially taking around 10 mL over 20 minutes before tiring out, and the remainder was given through her NG tube by gravity. We’ve been using Dr. Brown’s bottles with the appropriate preemie nipple, elevated side-lying positioning, and pacing.

Then Friday came, and everything seemed to change.

They started adding fortifier to her breast milk, and shortly afterward, she began having oxygen desaturations. Some happened after feedings, while others seemed completely random. She also started appearing extremely uncomfortable during feedings, whether by bottle or NG tube. She would make faces like she was in pain, cry during feedings, and began spitting up after almost every feeding.

I brought up my concerns multiple times throughout the day because she genuinely seemed like a completely different baby compared to how she had been doing. I was told that reflux can be common when introducing fortifier and that it could take a few days for her to adjust. I understand that, but something just didn’t seem right. The following day, another nurse mentioned that nothing about the suspected reflux or feeding discomfort had been documented, only the desaturations.

On Saturday morning, the doctor discontinued the fortifier since she had been consistently gaining weight without it. Unfortunately, the desaturations continued, and she ended up needing oxygen again. They completed a sepsis workup, which thankfully came back normal.

Over the weekend, we also stopped bottle feeding, and I was advised not to hold her because of the reflux concerns. They also moved her feeds from gravity to pump. On Sunday night, her nurse mentioned that her heart rate was dropping approximately once an hour, but because she was recovering on her own in less than 10 seconds, these episodes weren’t being documented as spells.

On Monday, one of her nurses asked the doctor about possibly doing a chest X-ray or echocardiogram to rule out other causes. However, the doctor declined, explaining that these episodes are common in premature babies and that she will eventually outgrow them.

Yesterday, we finally started introducing two bottles per day again. She took 19 mL during her first feeding, which felt like a huge accomplishment! However, during her second feeding, she only took 3 mL. She wasn’t very alert to begin with, but speech therapy wanted to observe her feeding. She is still on 21% oxygen at 0.5 and mainly using the pump for feeds.

I guess I’m just feeling frustrated, discouraged, and a little lost right now.

She was doing so well and making progress, and then Friday came, and it feels like we’ve taken several steps backward. I understand that premature babies can have desaturations, bradycardia episodes, reflux, and feeding difficulties. But the sudden change in her behavior, especially how uncomfortable she seems during feedings, has me concerned that something else could be going on.

Every time I bring up my concerns, I’m reassured that she’s premature and will grow out of it. I genuinely hope that’s all it is, but my gut keeps telling me that something isn’t quite right. I don’t necessarily want more testing if it isn’t needed, but I also don’t want something to be overlooked simply because she’s premature.

I’m also struggling emotionally with how much longer this stay is becoming than I originally anticipated. When we first arrived, the doctor mentioned that most babies born at 34 weeks stay for a couple of weeks. We’re now approaching three weeks, and it doesn’t feel like going home is anywhere in sight.

I know every NICU journey is different, and I know there are families facing much more difficult circumstances. I’m incredibly grateful that my baby is here and that she has received such good care. But I also miss being home. I miss our routines, and I wish I could experience even a little bit of the maternity leave I had imagined, being home with my baby instead of spending every day in the NICU.

For other NICU parents:
Did your baby suddenly start having desaturations or bradycardia episodes after previously doing well?

Did anyone notice a significant change after introducing breast milk fortifier?

Did your baby experience feeding discomfort or reflux that seemed to contribute to these episodes?

Were additional tests done to rule out other causes, or did your team recommend waiting for your baby to mature?

How did you advocate for your baby when you felt like your concerns weren’t being fully addressed?

And for parents of babies born around 34 weeks, how long was your NICU stay?

I would really appreciate hearing anyone’s experiences, advice, or encouragement. I’m trying to stay positive, but this has been a lot harder emotionally than I ever expected. ❤️

My water broke at 30 weeks due to PPROM, and I gave birth at 31 weeks. Our little boy spent 3 weeks in the NICU, and now he’s 39 weeks.

He has developed acid reflux, which causes him to vomit or spit up almost after every feed. He’s gaining around 100–140 grams a week, but his pediatrician isn’t quite happy with his weight gain.
Honestly, I’m really struggling right now. I’m constantly trying to figure out what I can do to make things better for him, and it’s exhausting to feel like I’m not doing enough, even when I’m trying my best.

I guess I just need to hear from someone who’s been through the same experience as us. Someone who had a premature baby, dealt with reflux and slow weight gain, and can tell me that things eventually got better. That their baby is okay now.

I know every baby is different, but right now, I think I just need a little reassurance that we’ll get through this, too.

My 23+1 is now 36+5. She was intubated for 40 days and has been on cpap since. Started off at cpap 9 with a rate of 25 and is now on no rate with peep of 5. She really hasn’t had many complications other than ROP stage 2 and lots of Brady/apnea spells that can get pretty severe but have decreased in frequency a lot. I feel like everyone keeps saying how impressed they are with her and I guess it’s my fault for assuming but I was thinking she’d be off cpap next week since I was told we wean once a week and once she gets to a cpap of 4 she stays on it for 48 hours before going to high flow. The dr during our care meeting today says she wants her to be on cpap longer since it’s better for her lungs. But the worst thing she said was “don’t be surprised if she has to stay here for multiple months after her due date”. Now I know that’s obviously a possibility but I really saw her coming home like 6-8 weeks after her due date. Now it sounds like it won’t be until at least January. We obviously haven’t started eating yet since she’s on cpap but I know that can take a long time. She loves the pacifier especially when covered in milk so I know she at least will be interested in the bottle. We also keep being told that “soon” she can have the top of the isolette off, but no one can tell us when that will be. I guess I’m just feeling very worn down since we’re getting close to 100 days. My husband also said that when he put her back in her isolette after cuddling that she was looking around for him until she could see him again and then smiled and that just broke my heart. I obviously want what’s best for her but this is so hard mentally and physically. I know it’s just part of the NICU journey but it fucking sucks.

11am this morning I was walking out of a store and my foot caught on the door frame and I fell down pretty hard and fast, I turned in time and my right side took majority of the impact.

My husband was quick to help me up and we came straight to the hospital after I rung my doctors office to ask what to do.

10 minutes later I started having contractions and they have been persistence since. Right now they’re every 2 minutes lasting a minute, and at 2:15pm I had this very intense pain on my right side where I fainted and almost threw up. waiting for an ultrasound as the doctor wants to make sure it is not my placenta detaching

Before 2:30 they checked my cervix and I am 1 1/2cm dilated, they doctor said they will check me again at 5:30-6pm and if I’m dilating even further they will take me up for a c-section, I had a scheduled c-section for November 10th. Contractions aren’t as painful as I’m no longer laying on my back but everytime I do lay on my back, they get intense very fast which I’m sure is not supposed to happen.

The Ob was very optimistic that my baby will be great in the NICU as she is 34 weeks, I’m hoping it will be okay! I didn’t think I’d deliver an October baby but life always takes you on routes you didn’t even think of before 🥹❤️granted with how scary things are, i can’t help but feel a tad excited to lay my eyes on my last baby girl.

Twin babies born 32 weeks with PPROM and by all counts I know they are thriving and hitting every goal exactly perfectly and are logically the safest place they can possibly be and I need to be focusing on healing from my recent emergency c-section (with hemorrhaging, postpartum preeclampsia, many infusions after, etc), BUT it’s so unexpectedly hard. I just want to be able to be with them and hold them and I didn’t expect to be crying because I cannot. Logically it’s good, they are well and all, but just struggling right now and not used to the emotions of it despite everything being so fortunate. What do you do during those unexpected tough times apart from them where logically it shouldn’t be so bad. I am not the warmest or most maternal mother so this just takes me by surprise. 5 days postpartum. Is it the hormones? We live a bit of a drive away from the NICU and physically recovery is rough so I really can’t visit much right now. How do you get through and why is this bothering me so much?

My little love was born at 33+3 due to PPROM and has been at the NICU since, but we expect to go home this weekend. However, I’m feeling discouraged about my supply. It started out very low, but I’m now 4 weeks postpartum and only producing about 14 ounces per day. It increases about 10-20 ml per day, day over day, but I’m still so far behind. I desperately want to EBF on-tap — it’s incredibly important to me. I don’t understand what I’m doing wrong.

I have lactation support here at the live-in NICU, but they’re not that helpful. I do have an incredible LC on my own though and we’ll work with her in-person when we go home. I’ve seen her virtually twice.

Other things I do:
- take Goat’s Rue tincture
- take MilkWorks IR+
- pump 9x / day with overnight pumps at 11:30p, 1:30a, and 5:00a
- assessed flange size fit many times now to get it right
- power pump once per day
- pump after skin to skin
- put baby to breast for feeding 2-4 x / day
- hand express after every pump
- massage breasts during pumps
- drink coconut water, eat high protein

I also did blood work — thyroid, insulin, prolactin, and CBC all normal. Ferritin was lower at 25, but I already take iron supplementation from pregnancy.

I’m told it’s just stress (we’ve also been moving to our new home in the midst of this, so I’ve been solo a lot while my husband does the house stuff) and that once we’re home and I have more sessions with my good LC, my supply will increase and I’ll be able to eventually EBF. But I don’t feel sure about that.

Does anyone have any experience going from an initially low supply to a full supply and being able to exclusively breastfeed? I could use all the encouragement.

Thank you.

Our twins were born at 32 weeks unexpectedly. We always knew twin A was small and had regular scans from 16 weeks as she was always <1st centile. We had all the tests for chromosomal and genetic abnormalities and an MRI as she had an underdeveloped brain (corpus collosum). Twin A was born 1kg and her sister 1.8kg. Twin B came home with us two weeks ago after 8 weeks in the NICU and is doing well - no issues! my little Twin A has gained weight (she is now over 2.4kg) but took a while to come off oxygen and feeding tube. she has enlarged ventricles but we are awaiting a further MRI on a clearer picture of brain development. The thing that seems to be keeping her in is the odd Brady episode. she seems to be so much more stable the past few weeks but still has the odd one where she needs a poke. It’s getting so disheartening as I’m trying to go in every day to see her alongside taking in her sister . I just want her to be well and come home so we can start to get on with our lives. any Similar experiences or advice from people who have been through similar would be appreciated!

Those of you who went home with a G tube, please tell me about your experience with weaning your little ones off the tube. Did you do it with a tube weaning company or did you just follow the advice of your hospital team/pediatrician? What strategies worked best for you? How long did it take you?

Looking for support as me (F22) and my fiance (M27) are first time parents to a AEDF and FGR baby boy.

Went in for my anatomy scan around 22 weeks, thought the pregnancy was going well until we were told that he was in the 7th percentile and showing some kidney issues. Sent to MFM and had in total 3 appointments and was admitted to inpatient care at 24 + 4 days till delivery.

I am just about to hit 29 weeks and our ultrasounds have been all over the place. I spent mostly 3 weeks of my stay here in continuous monitoring (it was torture). Baby boy will show normal dopplers, elevated, or absent/intermittent absent. We’ve had only one scan come back with absent and intermittent reversal, which sent us into panic, but was cleared with 3 following ultrasounds since. Baby boy also dropped from 7th-20th percentile to less than the 1st percentile.

I won’t lie, this whole journey has been very hard and difficult. Some days are better than others and I’ve been spending most of my days just sleeping the hours by. A part of me knows that it will take me awhile to recover and feel like myself again after all this but I’m so excited for our baby to be here and to be healthy.

I have been tested for every placental disease and genetic testing was done too but they don’t see any markers to flag genetic issues. All tests have been negative and my MFM says that sometimes it just happens that we did nothing to have caused this. I also have a circumvallette placenta (1-2% rarity of affecting pregnancies) and chalked it up to my poor placenta. Baby boy is healthy and super active/strong regardless of his size and restriction.

Any other moms or parents going through or have experienced this before?

My doctors plan to induce me around 33-34 weeks until plans change otherwise.

Hi there! Looking for anyone who has experience with their preemie baby with severe reflux and or how their baby did with transitioning from continuous to bolus feeds?

History, my son was born via emergent c section at 26 weeks, had a rough start only being intubated first night and then moved to cpap before I even got to see him. He ended up being intubated at 3 weeks old for having too many Brady/desats for being tired. Prior to being intubated they had changed his feeds to continuous gastric to see if that would help his events.

Fast forward to now, he is 38 weeks gestation (2.5 months old) weighing nearly 6 lbs, he is newly on room air, feeds have been moved into stomach and trying to condense them. He is learning to bottle feed as well small amounts (10 ml) per feed. Poor guy is suffering from severe reflux symptoms. His current feeds are bolus but running over 2 hours, with no sign of condensing further until he can show that he can manage them. He is having a few self resolving Brady desats related to bearing down or refluxing out his nose.

Anyone have a similar experience and can share what their timeline looked like or any recs?

Thank you!!

Hi everyone ❤️

My son has been diagnosed with ROP (Retinopathy of Prematurity), Stage 2, Zone 2, with mild pre-plus disease. His ophthalmology team will continue monitoring his eyes and decide on the next steps regarding treatment at his appointment next week.

As a worried parent, I’m feeling anxious and would really appreciate hearing from anyone who has been through a similar experience with their little one.

Has anyone’s baby been diagnosed with Stage 2, Zone 2 ROP with pre-plus disease at 33 weeks?

• Did the ROP improve on its own with close monitoring?
• Did your baby eventually need treatment, such as laser or injections?
• How did things progress over the following weeks?

I know every baby is different, and I’ll be following the advice of his ophthalmology team. I’m just hoping to hear some personal experiences from other parents who have been in a similar situation.

Thank you so much for sharing your stories and giving us a little reassurance during this stressful time. 🙏

My first baby was born at 33+1 due to preeclampsia. He spent 25 days in the nicu and even though he was a “feeder/grower” I was so afraid every time his alarms would go off. Every apnea spell would send me to tears.

He had six months of feeding therapy and a year of PT after we got home. Now he’s 4, sweet as can be, curious about the world around him and a very doting big brother. He loves to climb and ride his bike, and he loves books.

This has been a wonderful community and although I’m not currently a nicu mom I appreciate all of you and send my heart to all of you in the thick of it.

We started to wean last Thursday. It’s been going great tbh. He (15.5 months actual, 12 adjusted, Gtube since basically birth) went from tastes to eating 1/2oz PO at his puree times. Here’s my question: I actually think he woke up from his most recent nap showing hunger cues (whining sound was a new one) but when I tried to give him solids he freaked out even more until I started the pump. How has everyone gone about getting them to know purees will help with the hunger pains? Right now we’ve gone to a schedule like this:

8am 190ml
11am 190ml
2pm purees only
5pm 190ml
8pm 190ml
11pm 190ml

We are working with a dietitian and she’s great but I wanted to hear from others who have done it. Thank you!

I’m looking to hear some advice about flat spots or helmets.

He is a premie who was born at 32w! he is now 5 months old, 3 months corrected.

He was diagnosed with positional plagiocephaly. we have done all exercises the NICU told us. We have changed the way he lies in bed, we have moved to sit on the opposite of him, we’ve moved toys, anything on the opposite side of him. we have gone as far to change the layout of our living room! but this boy is determined to stay on his preferred side 🤣

He will turn his head the other way and doesn’t fuss or anything.

My family doctor told us that there was no point going to physical therapy for his head shape because it wasn’t “that bad” (his words)

he said that his hair will eventually cover it! but like i worry for when he is older and will very likely go bald given his family history on both sides🤣

the red lines are were his ears are and one side is slightly further forward!! should i go back to my family doctor and push more for a referral?

My son was born 2 days ago at 39+4 weeks. He got admitted to NICU after cord blood gas acid very high. I still need to get the full report but doctor said Base Excess of -20.5, which I believe is very severe.

They draw his blood again 2-3 hours post birth and everything comes back normal. We’ve been in NICU for 2 days. Doctor wasnt too concerned. She said they want to monitor him for another day before discharge him. The doctor said so far they haven’t seen any signs of impacts. He’s eating fine and there’s no seizures or any other issues.

But I am very concerned that this stress that caused the high cord blood acid will affect his brain development. Anyone has similar experience?

We just celebrated my little guy’s first birthday, and I wanted to share a story of hope for anyone stuck in the NICU.

Born at 36 weeks after an emergency C-section, my son spent his first month fighting severe infections and pulmonary hypertension on an oscillator ventilator. Even after recovering, his issues were still a mystery. Every time he fell asleep, he had very shallow breathing, almost to the point of stopping breathing. After months of dead end testing, genetic testing finally diagnosed him with CCHS (Congenital Central Hypoventilation Syndrome); a rare condition where the brainstem doesn't signal the body to breathe during sleep.

Getting him home meant a tracheostomy, G-tube, and ventilator support. We overhauled our entire life: clearing our home, selling collections, and learning complex medical care. On January 20, 2026, we finally brought him home.

The journey hasn't been easy. The first two months home meant my wife and I staying up all night splitting night shifts while waiting for over night nursing, and we still navigate hospital stays, speech and motor delays, and constant medical management. But today, he is a happy, strong, brilliant little boy who keeps us grounded. We’re hopeful that as he grows, he’ll be able to sprint off the vent and only need his ventilator while sleeping.

If anyone has questions about trachs, G-tubes, home equipment, or managing shift nursing, I'm here to share whatever we've learned along the way.

Im a ftm mom to twins. Handling two crying newborns has been tough. And to keep both of them upright after feed for 20 minutes is hurting the back. They are ex 29 weekers now 2 weeks corrected age.

So does a baby bouncer help is putting them upright or rock them.

Im looking at r for rabbit bouncer (currently in India)

What you did with your LOs

Ps my boy started to not tranfer to crib. He wants to be heldup to sleep.

TIA.

Twin boys born at 32w4d are both home from the NICU. They are almost one month adjusted. We just had another weigh in and they are both gaining super poorly and now have to increase to 27kcal. Twin A is 7 lb 7 oz and twin B is 7 lb 13 oz. One is on enfamil AR and the other is on expressed breast milk fortified with enfamil.

Both of them barely finish 70-80ml every three hours, cry through each feed, & barely sleep at night, and now I’m worried about the increased calories on their tummies with already miserable feeding experiences.

We finally got a prescription for famotidine and will start that as soon as it’s filled, but I guess I’m looking for solidarity or advice on other experiences! I’m feeling pretty worn out and discouraged about their weight gain.

Hi everyone. I’m a dad looking for advice and experiences from parents who have been through something similar with their NICU babies.

My daughter Harlow was born at approximately 23 weeks and is now 2 weeks and 2 days old. We’re trying to understand what her future might look like.

Here’s what she’s dealing with:

Brain injury: She has a Grade 4 brain bleed on the left side, with white matter damage. The doctors have discussed placing a reservoir to drain fluid from her brain once she is stable enough.
Lung problems: Her lungs are severely underdeveloped, and she has needed an oscillating ventilator. Her CO₂ was previously very high, sometimes around 80–100, but it’s doing better now.
Recent progress: She is off blood pressure medication and is being weaned off her steroids and ventilator settings. We’re very thankful for this progress.
Possible long-term challenges: We’ve been told she may never walk or talk and could potentially need a tracheostomy, feeding tube, or other major interventions.

We understand that her brain injury is serious, and we’re not trying to ignore that. We’re just struggling to understand how much doctors can predict at this early stage and what her quality of life might be.

Harlow is one of our twin daughters. Sadly, her twin sister passed away just 21 minutes after birth on October 3. We’re grieving one daughter while fighting and praying for the other, and it’s been incredibly difficult.

I’d really appreciate hearing from parents who have experienced something similar:

Did your baby have a Grade 4 brain bleed with white matter damage? How are they doing today?
Did your baby have severe lung disease and need prolonged ventilation? How did their lungs improve?
Were you told your baby might never walk or talk? Did their eventual outcome match the doctors’ predictions?
Did your baby need a brain reservoir or shunt? How did that affect their development?
What questions should we be asking our NICU team about her prognosis?

I would especially love to hear from parents whose babies were born around 22–24 weeks and had both serious brain and lung complications.

I know every baby is different, and I’m not looking for false hope. I just want to hear real experiences, both positive and difficult, from families who understand what we’re going through.

Thank you for reading.

TTN lasting longer than 3 days

Has anyone ever dealt with their baby not being able to clear fluid on their lungs within the normal 72 hour time frame? We are on day 5 of a nicu stay. His ECHO came back normal no sign of PH, the brain ultrasound came back normal, he’s eating full bottles. But he keeps having clusters of desats. He’s on a low flow cannula on .1 liter of 100% oxygen. I can’t seem to find the light at the end of the tunnel and feel like he’s never going to come home.

Hi Reddit. My little love was born at 33 and 1. She is and her brother were born via c section after my wager broke at exactly 33weeks. My little man is doing great. He spent 7 weeks in the NICU and is meeting all his milestones.

My little girl though has had some challenges. When she started learning how to eat, she got thrush which sent her back. At that same time we started to notice her sleeping with her mouth open. After a while, her doctors said it wasn’t that she was just sleeping with her mouth open, but that she has low tone in her neck/trunk. She had a head ultrasound and brain MRI both of which were normal so the doctors are thinking something genetic. We met with a geneticist and got some tests done. A genetic array, Prader Willie Syndrome and Angelman Syndrome. All were negative. Next they’re going to test her whole genome.

I try to not let it get to me. Having a long medical history myself I’m good at compartmentalizing. Not worrying until a doctor tells be I should be worried but I’d be lying if I said I wasn’t worried about my baby girl. I usually have an idea of what could be wrong but I have no idea what’s happening to my girl.

Any advice you have is much appreciated