Content warning: LC, NICU loss

Hi all,

I gave birth to my second child on January 15 at 23 + 6 weeks gestation after my water broke at 23 + 2 weeks. Our baby lived 8 days in the NICU before he died after contracting NEC. My placenta came back positive for chorio, but likely this developed after my water broke.

My first child was also preterm, born at 34+4weeks after my water broke at 33 weeks. She was in the NICU 11 days before coming home without any ongoing issues. My placenta came back negative for chorio that time, but there was some indication I was developing an infection.

No evidence either time of incompetent cervix and no preterm labour until after my water was broken.

If I get pregnant again I will be followed by an MFM. But I'm looking to hear about people's experiences of pregnancies after 2 instances of PPROM especially in cases where there weren't signs of an incompetent cervix.

After 287 days, my LO is finally home and he’s doing well. He came home on a vent with a trach and g-tube. He is in breast milk the first 4 feeds and then 24kcal of neosure with iron the last 3 feeds. He seems to tolerate it OK but recently he’s been really gassy to the point of waking up from discomfort. We give him some pear juice and sometimes miralax for constipation but it doesn’t solve the gas issue.

Any tips on what we can try on LO or ask his primary about specifically?

For context: 26w5d, 14oz (410g), chronic lung disease, and pulmonary hypertension.

I know this is a very controversial topic. I am at the point right now. I’m super confused, because of everything happening. Again, I don’t want my kid to go through anything and blame it on prematurity. How many parents decided, they won’t vaccinate their kids? How many parents also decided to vaccinate them? Will be happy if you all can give me reasons why.

It’s been really hard to see the pediatrician that normally sees my other kids, especially with my newest baby needing a few more appts than they did. The Dr she’s been seeing is being.. a little aggressive I guess about her being on oxygen. She’s almost 3m old, 1m adjusted. At her 2m visit he kept saying that she just really needed to be off oxygen at that point, that she was plenty old enough. Her X-rays showed her lungs are underdeveloped. He did also put incorrect info on her chart. I feel like there’s some kind of strange pressure for her to be off oxygen. I had pre eclampsia, was on a ton of bp meds for my sustained 160/110 bps and she was IUGR. I feel like that probably is contributing to her slow growth and need for breathing help.

We’ve tried 4 room air trials and she has failed them all. Her most recent one she dropped into the 70s not even 2hrs in. I turned her oxygen back on, called the office and the first thing they said was that I probably had the pulse ox sensor on wrong and that there’s no reason she should be failing. 😤 I know how to put them on. I know what retractions look like on an infant. I’m just annoyed. Frustrated. The waitlists where I live are so freaking long especially for places that take my insurance. anyway. Thank you for reading this far. Just needed to get it off my chest. I did request a different Dr for her next appt so fingers crossed.

I had my baby girl in Jan of 2024, she was born 2 months early and spent 2 1/2 weeks in the NICU. I spent a week in the Hospital, because of my severe pre eclampsia. I honestly just thank God for her being so healthy and being able to graduate early.

But, There were many times where my husband and I would show up to the NICU (whether separate or alone) and the nurses & doctors had done things to our baby without our consent and without informing us. Many times, even claimed that they had given us forms to sign, at times (forms were given but not signed) as well as times where we were never given forms. The NICU would go ahead and do whatever procedure and claim "they mustve got lost", mind you I was in the same hospital and they had my number and I would call every night on nights where I was unable to visit (because of my catheter/mag drip)& they never informed me of any of the things that they did.

Now my preemie turned 1 (2 months to go until her corrected age) and we are noticing that she has a scar under her tongue from a possible tongue tie (which Im assuming is common in preemies) but neither her nurses, nor doctors, nor her pediatrician ever informed me of a tongue tie snip being done. And Im just wondering if this has happened with anyone else?

Reason I am bringing this up now is because my little one is growing teeth and babbling/talking.. and Im wondering if I now need to request her medical records to see if this did in fact occur. And where to go from there.

(I noticed the scar under her tongue when I brought baby home about when she turned 6 months (she was still so tiny) and I asked my husband if the NICU staff ever informed him of a tongue tie or cheek/lip tie and he said "no" and that they wouldnt do that without informing us... but this tells a different story. Similarly, we had other issues with our NICU nurses, putting weighted objects when baby was 4lbs, propping bottles, and stacking 4+ diapers in her incubator, as well as other issues. We were too afraid to speak out till now. So any advice would be useful ♡

Hey everyone, my wife just gave birth to our amazing son, it was preterm labor so he had to go to NICU. During the labor my wife temp spiked and they are running test to rule out RSV, COVID, ETC. they already did testing on my son and he is all in the clear. My concern is that if me or my wife or both of us come back positive for being sick we will have to wait 7 days to see him. I'm just looking for advice to help her through this because I know if she can't see him for 7 days it's going to destroy her, even only getting to hold him for 30 sec broke her heart so I want to make sure I'm there for her in the best way possible. Any advice will help, thank you!

Hey all!! Our daughter has been in the NICU for 40 days now she was born at 29W 6D and my boss has been pretty easy to work with and letting me work from the NICU every week but now he is wanting me to come in. I don’t have PTO and I am not eligible for FMLA or Paternity leave as I haven’t been with the company for 12 months yet it has only been 11 months. They are wanting me to come back because people in my department have very bad attendance from being lazy and they are trying to fire them but those people are using my situation as an excuse for them to keep their job so my work wants me back. I live in Indiana so any help or advice would be greatly appreciated!!!

Hello, my little one joined us at exactly 34 weeks on Sunday. He has been doing well with breathing on his own after the first 12 hours on CPAP. His bilirubin was high on Tuesday then went up again yesterday so he spent yesterday and will spend until his levels are checked in the am under phototherapy. He also had to have an NG tube placed on Wednesday because he has been pokey with his feeds. He was 5.8 oz at birth and was 5.2 oz last night.

I’ve been pumping every 2-3 hours for him to have the good stuff so sleep has been awful. We visit twice a day typically but due to phototherapy today, we decided to only go one time and get some stuff done around the house because that was our plan for last Saturday when my water broke.

I obviously want him getting the care he needs but the back and forth and having to leave him is getting to me. I thankfully feel so bonded and in love with his beautiful little face when I see him but trying to sleep, pump, recover from a traumatic birth is A LOT!

I’d love to hear some other 34 weeker boy mom encouragement! I’m well versed in the terminology, have child development experience but hearing that boys are slower to develop especially in terms of feeding has been discouraging.

Our son was born unexpectedly at the first of this year at 33w6d, so basically 34 weeks. Long complicated story short, our hospital didn’t send him to the nicu after birth because he didn’t have any apparent issues. We were discharged after 5 days just to end up in the nicu for 2.5 weeks at another hospital. We’ve been home now for almost a week and my anxiety has never been higher. He is 6lbs now (was 4lbs 10oz at birth) so he’s gaining weight, but he is spitting up so much and he seems like he’s in so much pain when we are burping him. He seems so fragile and I constantly feel like I’m hurting him. We still try to do side lying for feeding but sometimes we do elevated. Hes taking 2 oz every 3 hours. Also he poops constantly, and when he is pooping his entire body turns red and he screams and grunts in pain. It’s awful. Clearly this is my first baby and I’m so anxious about every little thing, but I feel like his nicu stay amplified it even more. Will it ever get easier? Also, will I ever sleep again? lol. He flails around in his bassinet at night and turns onto his side which scares me. We swaddle him but he doesn’t seem to like it. We tried continuing to use the hospital swaddle blankets, but he would always get out of those too even in the nicu. He makes awful noises all night and I just can’t sleep.

My 7 week old baby is on an NG tube due to Pierre Robin Sequence (small chin/jaw, cleft palate, tongue falls back and causes airway issues). The cleft palate means she can’t suck or use a regular bottle or breastfeed, and right now she is only taking a few mL by mouth a few times a day with a special cleft palate bottle. The majority of her nutrition comes via the NG tube. We are working with speech therapist to increase her oral feeding, but it’s coming along slowly. In addition to the NG tube, which I have heard can make swallowing harder, she has a retainer in her mouth that also makes sucking and swallowing more challenging.

Our doctors have told us that if she is not taking more by mouth within a few months, that she will need a G-tube. I was really resistant to this at first, but now that we are home with an NG tube, I’m wondering if the trade-offs mean we should transition to a G-tube sooner. She is really struggling with congestion, which is keeping her up at night, and it looks like her NG tube is always coated in mucus. We are doing everything we can to manage the congestion: saline spray and suction, reflux medication, inclined bassinet, humidifiers, but they’ve only provided a modest benefit. The nasal suction seems to be irritating to her nose and seems like it’s a catch 22 for if it is helping or not. I have heard that the NG tube contributes a lot to congestion/nasal irritation, and that it makes swallowing a lot more challenging as well. I’m hesitant about the G-tube because it could be a potential potentially unnecessary surgery, and it just seems so serious.

Have other folks change to a g tube from an NG tube, and what were the pros and cons with the switch?

Soon I will be bringing my baby home on oxygen. I am excited to finally have him home but a bit nervous due to the oxygen. So I want to ask parents who have gone through it how did you manage? What about going out to like stores restaurants or public places? Are these places ok with your baby being on oxygen? I know that baby needs to be home for his safety from infections but I still want him to see a bit of outside world and we have been in hospital since October so me and my husband haven’t gone out to have like a nice dinner and we really want to do one with our baby with us like a family. Any advise or tips will be a great help to us

We’re really struggling with feeding our 18w (13w adjusted) baby. We can’t tell when he’s full and when he’s hungry due to his hunger cues looking just like reflux cues.

He wasn’t gaining weight for a week or so because he was spitting up so much, so we upped his feeds. But now I feel like we are over feeding.

So I want to do a poll to ask how much does your 4m old eat per bottle?

Baby (born at 25 weeks) is back home after about 100 days in the NICU, but cannot finish rarely any bottle because he simply falls asleep Is anyone else’s baby so tired that they can’t finish bottles? I get falling asleep occasionally or even getting drowsy, but he is deep sleep and unengaged after about 10 mls every single time. Someone tell me we’re not alone and you have some tips please….

Hello all! My baby is 7 months old 4 corrected born at 27w5 days.

We live in Europe and our doc when he completed 4 months corrected she adviced us to start diversifying. He is now at it for two weeks he doesnt seem to like it at all. Allthough i am trying to really make it fun and enjoyable we laugh i let him take the spoon messy play etc the moment i insert the spoon in his mouth he makes a disgusted face. Sometimes he gags sometimes he pushes out and sometimes he swallows but i cant get past 3-5 spoons each time. And the he starts crying. I never insist so i take him out of his chair asap.

I cant help but worry as i see other premature babies he was at the hospital with also born at 27 weeks really eating everything now two meals a day and my son is nowhere near

Any advice? His doc keeps brushing it off bit i cant help but panic due to the fact he had the feeding tube etc for sometime On the good side my son has an excellent weight and height and u would never think he is premature he fully caught up

I am really keen in helping him ear as he has reflux and this will def help him Thank you for any advice on how to help him eat his meals (only veggies now moving to fruits next month)

When did your 30 weeker crawl and walk? Our son is approaching his 1st birthday (8 months adjusted) and just started sitting. You can tell he wants to crawl, he just can’t figure it out!! lol

What are you all using to make formula bottles? I used glass bottles so it seems counter productive to buy water in plastic jugs. LifeStraw has a counter top water filter I was considering.

Question for fellow parents of NICU babies who have been home a while. Especially those who had a lengthy hospital stay.

Our 23 weeker, now 11m adjusted/15m actual, cries hysterically every single night. Sometimes once, but usually several times. He needs lots of cuddles to go back to sleep. Could this be NICU related trauma or can term babies be like this too?

Dad reckons he wakes up afraid he's alone again like in NICU which breaks our hearts.

Hello! For some context, I had to have an emergency C-Section with my son due to him having a spiked heart rate and having issues breathing. I didn’t get to hold him until two hours after he was born. We then had to be transferred to a different hospital where he was in the NICU for three weeks. We got discharged two days ago and I’m worried that after all he has gone through, he will have trouble bonding with me. Any advice or comments would be appreciated!

Has anyone had experience with hospitals here in Arizona? Preferably, Banner Desert Medical Center.

Our little boy was born on 12-26-24...

Last night we had a missed call from the NICU doc and he had a major Brady event. During the call back the doctor explained what had happened and the intervention they did, (re-intubated, chest compressions) I called to speak with the nurse later and she said the event wasn't normal but from everything I had read, it seems to be. Now to my question, at what point during a Brady event do they consider "major"?

What is normal for Brady/Apnea episodes? My LO is 34 weeks (born at 30) and still has about one to two per day, usually self resolved but occasionally needing stimulation. The doctor is going ahead and stopping his caffeine anyways. I tried to ask what would be considered normal for his age and got unfortunately vague answers. Is this a normal frequency? The doctors/nurses don't seem too concerned but I am. What is others experience with this for similar aged babies?

In Nov 2023, I delivered my baby at 31w6d. He was in the NICU for almost a month. My OBGYN told me that it was placental abruption. My pregnancy for pretty healthy and going quite smooth but all of a sudden on a Sunday night I started experiencing belly pains that won't go away. In the morning at around 5 AM, I started bleeding heavily. We rushed to the ER and at around 8 AM, my baby was born by emergency C-section. He is doing very well now, he is 14 months already, walking and babbling and doing all sorts of stuff.

But, to this day, I just can't get over the guilt (or regret)...or idk what feeling is this exactly. I keep trying to understand (through google of course) the reasons why I delivered him prematurely. Why did this placental abruption happen? Idk the reason and probably will never will, coz even the doctors cannot pinpoint to a particular reason. I just keep wondering how things might have been if I had planned a pregnancy before turning 35 (I got pregnant at 37), or maybe I should have worked from home instead of travelling to office everyday, which was becoming hectic with the pregnancy, or maybe was it the backbends and yoga poses that I was doing which I should not have done...

All the 'what-ifs' start spiralling in my head and I go down this rabbit hole trying to find out and blame something (or even someone) for this. Does anyone else with premature babies feel this way? If yes, how do you cope with this?

Hi all! I’ll start off by saying I am not a NICU parent myself, but looking for suggestions from those with experience.

One of my best friends just delivered unexpectedly at 28 weeks. They’re looking at a NICU stay until April, and are several states away from where I live. I want to send a care package or a series of gifts to help them out over the next couple months. What would you recommend or have wanted that can be easily shipped or delivered via email from a distance?

Thanks so much!

hi, i have a four month old and we use the eufy sock. ive been notified twice tonight to check on my baby as his HR dipped between 75-77bpm, only for a second and then was back up to 90’s. his average tonight is 117. im concerned as his HR has never dropped below 80’s before. i will call dr tomorrow but does anyone know what causes this or if its normal? thanks!

My 24 weeker is now 6 months actual, 3 months adjusted, currently on day 200 in the NICU and is giving us a really hard time with feeds. She takes max 30ml and her full feed is 130. She seems to be developing an aversion of some sorts, she cues and drinks some but then just doesn’t want anymore. We’ve tried different bottles,different nipples, im so desperate to get her to PO Im Looking for similar cases, did they ever get it? Did you take baby home with NG/G tube?

We are planning to transfer her to a post acute care “rehab” facility for feeding therapy. But if within another month they can’t get her to feed either I will just bring her home on NG, this has been to long, i want bbyg home 😭

Our little man was born at 24 weeks even. When he was born he was red and sticky because of his translucent skin and my wife noted he felt like a gummy bear. As luck would have it, Wal-Mart was selling 1 lb gummy bears (just slightly smaller than his birth weight) around that time so we kept it for his progress photos. Everyone's journey is different and my gummy bear was home before his due date, but we all know a lot of people with success stories and have a lot of reason for hope.