r/NICUParents

I’m currently hospitalized with PPROM and would really love to hear from other moms who have been through something similar, especially prolonged PPROM.

My water broke at 28 weeks and 6 days. I’ve been inpatient ever since, and thankfully baby and I have remained stable. I’ve had steroids, magnesium, antibiotics, constant monitoring, weekly ultrasounds, NSTs, bloodwork, etc. The original goal we were given—and the goal I have mentally held onto this entire time—was making it to 34 weeks.

I’m currently 32 weeks exactly, and we recently had a conversation with our MFM about whether we should continue the pregnancy beyond our original 34-week goal if baby and I are still stable. That conversation is what suddenly made the decision feel much harder.

Our MFM explained that there is an incremental benefit to baby with additional time, particularly as he continues to mature, but he was also clear that staying pregnant longer may not actually change how much time our baby ultimately spends in the NICU.

When I asked him directly what he would do if he were in my position, he said he would go for 35 weeks. He also explained that getting all the way to 36 weeks would be much tougher because most women in this situation go into spontaneous labor before then. 36 weeks would be the absolute maximum they would let us go.

I think part of why this conversation hit me so hard is that mentally, I had finally gotten to the point where I could tell myself, “We only have two weeks left.” October 19th at 34 weeks has been the finish line I’ve been counting down to this entire hospitalization.

And suddenly, that could become four more weeks instead of two.
If we continued all the way to 36 weeks, we would go from October 19th to November 2nd. I know two additional weeks may not sound like much from the outside, especially when there is potential benefit for my baby, but after already spending weeks in a hospital room, mentally it feels enormous.

At the same time, continuing isn’t risk-free. There are ongoing maternal risks like infection and bleeding. I also keep thinking about the fact that I need to be healthy after delivery. My baby will likely need NICU support, and I want to be physically and mentally present for him—to pump, do skin-to-skin, participate in his care, and just be his mom.

But the hardest part for me isn’t even the statistics.

It’s the guilt.

I look at other women who carry their babies to 39 or 40 weeks and sometimes feel like my body failed my baby. I know logically that I didn’t choose for my water to break, but emotionally it’s been much harder to accept that.

I’ve already spent weeks living in a hospital room, being monitored constantly, wondering whether every contraction or change means labor or infection. Everything about pregnancy and birth has become so medical. Instead of preparing for birth normally, I’m thinking about gestational ages, infection, sepsis, respiratory support, feeding tubes, NICU stays and risk percentages.

And underneath all of that is something I almost feel ashamed admitting: I want to be done.

I want to meet my baby. I want to leave this hospital room. I want the uncertainty to stop. I want to start recovering and move into the next phase instead of constantly waiting for something to happen.
And then I immediately feel selfish for wanting that.

Because if another week inside me could help him, shouldn’t I be willing to do it?

And if I make it to 35 weeks and we’re both still stable, wouldn’t I then feel obligated to push to 36?

Where do you draw the line when there is always potentially some benefit to one more day?

I’m also really scared of hindsight.

If I choose delivery at 34 weeks and he struggles in the NICU, I’m afraid I’ll think, “I could have given him more time.”

But I also know there’s another possible version of hindsight. I could continue and develop an infection or another complication and wonder why I pushed myself beyond the finish line we had originally worked so hard to reach.

Obviously, I’m making the actual medical decision with my MFM and neonatology team. I’m not asking Reddit to decide when I should deliver.

I’m looking for the human side of this from women who have actually lived it.

If you had prolonged PPROM and made it to around 34 weeks, I’d really love to know: Did you deliver at 34 or continue? If you continued, how long did you actually make it before spontaneous labor? How did your baby do in the NICU? How did you do after delivery? Did you struggle with guilt about wanting pregnancy/hospitalization to be over? And looking back now, how do you feel about the decision you made?

I’d especially appreciate hearing experiences from both sides.
I think I’m struggling with how you can simultaneously want every possible day for your baby while also desperately wanting this experience to be over.

My son was born on Thursday at 32+3 via c-section due to preeclampsia. I went in to my normal high-risk OB appointment and was told I’d need to deliver that day. Everything happened so fast, my husband and I were not able to process what was about to happen. We were just concerned about our baby. The birth went well despite the circumstances, thank goodness. But now that I’m home and my baby is not, I feel empty. I go through phases of feeling okay then I get bouts of anger and extreme sadness and hopelessness. I keep thinking about how my son should still be growing with me and I’m angry that my body couldn’t keep him safe. I am very thankful that my son is getting amazing care and I know things could be worse.. but those low moments make it hard to stay positive. Any advice or just shared experiences will be helpful ❤️

My child was born at 28+5, due to spontaneous labor. The medical cause isn't really clear, and I am so worried that it may be caused (party) by the stress from having (social) anxiety. How do you deal with the feelings of guilt? Did you manage to somehow change yourself or your life and have less anxiety? And did you carry another baby to term?

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.

😭😭😭

Dad here, first time posting. Our son was born at 38+3 and came out stunned. Everything up until the very last minute was great but due to (I think) shoulder dystocia, he came out stunned and stressed. Apgars were 4 then 8, and he was floppy for about the first 20 minutes. He went to NICU on CPAP and IV antibiotics for GBS (mum was positive but only got antibiotics shortly before birth due to miscommunication from the nurse).

His first day actually looked pretty good, despite being stressed and irritable. Lactate came down to normal, infection markers were clear, and his neuro checks only showed mild signs. at this point it was only suspected that either he had no HEI or was classed as mild. Then on day 1 his oxygen dropped for about 40 seconds while asleep and needed breaths given. His oxygen dropped but his heart rate stayed steady. The brain monitor didn't pick up a seizure, but the doctors think it might have been one, so he's now classed as "technically" moderate HIE.

Because of that they started cooling, even though it was after the usual 6 hour window. Head ultrasound was normal, no seizures recorded since, and his blood results are all normal now. MRI is planned for later this week.

We can't hold him for 3 days and it's really hard. Seeing him so cold with all the wires and tubing is hard

Has anyone had a baby cooled for HIE, especially with a suspected seizure or late cooling? How did the MRI go, and how is your little one doing now? Any tips for getting through cooling and the wait for results would mean a lot.

He is our first child and this is very stressful to both of us (more so to my wife, as she is currently recovering from the very traumatic birth)

I’m writing this partly because I desperately searched Reddit and Google when our baby became sick, trying to find stories of babies who had been as severely affected as ours. I found some, but not nearly as many as I wanted. I hope someday another parent searching “infant botulism ventilator,” “baby paralyzed from botulism,” “BabyBIG recovery,” or “infant botulism recovery timeline” finds this.
Our son was a little over two months old when he became critically ill.
It started very suddenly. He had received his two-month vaccines the day before, and he also had rhinovirus, so initially there were several possible explanations for what was happening.
He stopped nursing in the middle of the night. The next morning he managed a few ounces from a bottle, but feeding became increasingly difficult. We took him to a clinic that afternoon, where he was diagnosed with thrush.
Over the next several hours, things got much worse. He became raspy, had difficulty swallowing, and started choking on milk. By around 11 PM, we took him to the emergency room.
He was barely breathing.
He went into respiratory failure and had to be intubated and placed on a ventilator. We truly came incredibly close to losing him.
No one knew what was wrong.
Over the following days, he became profoundly weak and essentially paralyzed. He couldn’t open his eyes normally, suck, swallow, hold his head up, or move his body normally. At his weakest, we were celebrating tiny movements of his fingers and toes.
There were terrifying conversations about possible hypoxic brain injury and other neurological conditions. He had an EEG, CT and MRI. His EEG was normal, his CT was normal, and his MRI didn’t provide a clear explanation for what we were seeing.
An attempt to extubate him failed, and he coded and had to be reintubated.
Eventually we were transferred again to a higher-level children’s hospital.
After almost a week on the ventilator without a diagnosis, a new provider raised the possibility of infant botulism.
That changed everything.
BabyBIG (botulism immune globulin) was obtained and given to him, and his testing subsequently came back positive for botulism.
It was an enormous relief to finally have an explanation for why our previously healthy baby had suddenly become so profoundly weak.
The hardest thing to understand about botulism recovery is that BabyBIG doesn’t instantly reverse the paralysis. It stops the circulating toxin from causing additional damage, but the nerve endings that have already been affected have to recover. That takes time.
So we started watching for the tiniest signs.
A finger moving.
A toe moving.
A little movement of his mouth.
Then more movement in his hands and feet.
Better color.
His eyes beginning to open.
Small movements of his shoulders and legs.
More spontaneous breathing over the ventilator.
We have learned to celebrate progress that most people would never even notice.
As I write this, my son is still in the PICU and still recovering. His lungs and respiratory muscles are getting stronger, and they have started spontaneous breathing/pressure-support trials as they work toward eventually getting him safely off the ventilator.
We don’t know exactly how long his recovery will take. Feeding is one of my biggest concerns because he was exclusively breastfed before this, and I desperately hope that when his suck and swallow strength return, we can eventually breastfeed again. I am continuing to pump while we wait for him.
But we are seeing our baby come back little by little.
If you found this because your baby has just been diagnosed with infant botulism—or because doctors are considering it—please know that severe weakness can look absolutely terrifying. Our baby looked almost completely unresponsive at his worst. He required a ventilator. He failed an extubation. He coded. His movements became incredibly small.
And yet we are now watching movement and strength slowly return.
I plan to keep updating this post as my son progresses so that there is a complete story here for the next parent searching at 2 AM, desperate to know what recovery might look like.
If your baby has had infant botulism—especially if they required mechanical ventilation—I would also love to hear your story. I would particularly love to hear from parents whose babies eventually returned to breastfeeding after being intubated.
And if you’re reading this years from now because your own baby is sick, feel free to reach out. I know how badly I wanted to find someone who had already walked through this.

My modi twin girls were born at 29+1 after a few bleeding episodes with placenta previa and vasa previa. Generally we’ve been very fortunate that our stay has been uneventful so far. They are 30+4 today.

I had a pretty traumatic c section and I have a 2 year old son at home. I’m still struggling to be up and active all day long so long days at the hospital are hard. I also cannot drive right now and my husband is already back to work (saving his leave for when they come home). My husband and I also decided to try to keep our sons routine exactly the same so we do daycare pick up and dinner/bath/bed as usual.

I’m struggling right now between managing pumping and trying to help with both girls care times plus skin to skin. I’ve only really been able to manage doing 1 baby skin to skin per day which makes me feel awful. I want to give both girls equal attention but it feels like between random tests, changes to care, etc it makes it impossible. I just need some advice to help with the guilt. I know once I’m more healed I’ll be able to do longer days at the hospital and it’ll be easier but for now it’s hard.

My baby was born in January and came home at the end of April. I handled everything so well. But processing this isn't linear.

I'm just feeling so blah nowadays and can't stop thinking about our NICU stay, and further back to my traumatic emergency C-section and horrible pregnancy. All these one year anniversaries are passing by. This time last year, I'd already had a few episodes of severe bleeding, been to the ER once, and had multiple scans to check on my subchorionic hematoma. I was also supposed to take it easy, so I was stuck at home all the time.

It's crazy too because at the time, even though I was anxious, I've always been a positive person so I just assumed everything would clear up and I'd have a normal full term pregnancy (like my first two pregnancies). That's what my midwives kept telling me - subchorionic hematomas almost always go away on their own. I was one of the unlucky few. One year ago I had NO idea what was coming.

I guess it's just hard looking back on it because I was a different person then. I mean, I'm happy with how my life is now, and I don't take anything for granted, but I will never be the same.

I was baking yesterday, had to weigh some butter in a saucepan so I put the saucepan on the kitchen scale. It was 1080 grams. My baby was born at 1060 grams. I just held the saucepan in my hands for a minute remembering how it felt to pick up my preemie for the first time.

Winter will be even worse, as far as anniversaries go. The week before Christmas was nightmarish; that was the closest I came to losing her. I was 22 weeks and a few days, bleeding heavily and cramping/contracting. I was in and out of the hospital but obviously there wasn't much they could do. Then it was just modified bed rest and counting the days, hoping to make it as far as possible.

That's it, that's the post. Just some rambling. I have always disliked this season because it's cold and dark and rainy. And now all of that reminds me of the hardest thing I've ever gone through.