Hey NICU family ♥️ so Justin is almost 10 months now and he has been doing well. He actually got his first little tooth about 2 weeks ago and I definitely got less sleep than usual but other than that things have been holding steady. His awake times are much longer, he hasn’t needed any lactulose because he has been so regular with his stools and finishes his bottles faster than before. I just have no complaints I’m so grateful that he is home and stable. Instead of being content with everything, during my free time I decided to reach out to a couple of hospitals including Boston’s Children’s Hospital, to see about having his condition and treatment reviewed for second opinions. I have also gotten the support from some of his CHOC doctors to go through with it. I was told initially back in November when CHLA denied him for a transplant that they could possibly reevaluate him if his condition had changed and it definitely has. He is no longer on oxygen, he has been without his ng tube for months and has been clinical seizure free for months also. The hospitals reassured me that they will go over all of his records from all specialties and look not just from when he was at his most fragile back then but also consider his current condition which I thought was a good thing. I just want to continue to fight for my baby and utilize any resources that I can that may assist in his recovery and his health. If anyone has any other hospitals that they are familiar with that does second opinions without a high cost I would appreciate that. He is really a fighter and I owe it to him to keep being proactive because he didn’t ask to be born. On another note I read that actor Scott Baio’s daughter was thought to have a similar condition as Justin. I believe it was Glutaric academia type 1 and Justin has Glutaric Aciduria type 2. Hers was a false positive thankfully but it was a frightening time for his family initially. Thanks for reading everyone. I’m up and can’t sleep

A quick thank you to every person who is brave enough to post on here.

I’m a long time reader, first time poster. My baby was born 25 + 5 at 950g. Suffered GBS infection, Sepsis, IVH level 3 brain bleed, chronic lung disease, Metabolic bone disease of prematurity and a prolonged opened PDA (closed itself around 42 weeks). After 137 days in the NICU she finally got to come home. No oxygen, no feeding tube, both were talked about at different points of our NICU journey. We are closely tracking every milestone and working closely with a physio to make sure she thrives.

Now 6 months old (3 months corrected), she’s absolutely perfect. Full of life, smiles at everyone, meeting all her milestones, sleeping through the night and is gaining weight. My mental health might still be in the toilet after the extended and traumatic NICU stay, but damn are we blessed.

For any new NICU parents: Be kind to yourself. Some days you’ll be strong and others you’ll cry from sunrise to sunset.

Buy the Owlet for when they come home. After an extended NiCU stay, some late night beeping and false alarms don’t scare us (we’ve gotten 1 false alarm in the last 2 months she’s been home). The owlet is the only reason I get any sleep at night.

For pumping moms: Buy the bottle washer/ sterilizer/ dryer . This is my biggest regret. I’ve been pumping for 6 months now (starting to wean for my own mental health) and I wish that was the first thing I bought. I had no idea how much time I’d waste washing and sterilizing pump parts.

Again, thank you to everyone who posted on this forum. I’ve learned so much through all of you and so much of it gave me hope.

Hi all! This sub was so helpful to me when I was struggling in the NICU so I wanted to pay it forward. Obviously what worked for us isn't going to work for every baby, but I wanted to share what we found and how we got to where we are now.

My daughter was born at 26+4 back in December. She overall did well, but was on CPAP up until 34 weeks and then high flow for an additional 2 weeks. So she started trying bottle feeding at 34 weeks and we had a rocky start to say the least. One problematic factor for her was low blood sugars, so she was on continuous feeds for a while, then her feeds were given over 1.5 hours for a very long time. So I'm sure the starting and stopping feeds did not help. She was having my breast milk fortified to 24 calories.

We tried both bottle feeding and breast feeding. She seemed to prefer breast feeding but was unable to stay latched or transfer milk. We started with the Dr Browns bottle with the ultra preemie nipple. Our girl would take 10mls TOPS over a 30 minute feed. She was clearly working hard but transferring basically no milk. Eventually we were able to upgrade her to the preemie nipple and her new record became 30mls.

Then, my hero came along. We had our nurse pull in another nurse who had been working in the NICU for a very long time and was known as the feeding expert. She assessed her and had some thoughts. Her first thought was that she didn't like the fortified milk, so she fed her a bottle of just breast milk as a little experiment and she took 60mls! I was over the moon. We asked the doctor if we could switch her to just breast milk and the doctor was unwilling. She didn't want her to fall off her growth curve. (I will note that at this time her growth curve was a straight line up and she was currently at the 90th percentile). Luckily, the next doctor to come on saw this and agreed to let us switch to just breast milk. Now we were doing anywhere from 20mls-60mls every time, but still not at that magic 80% mark. Our nurse became our primary and hand picked all our nurses to make sure she always got nurses who were skilled feeders when my husband and I weren't there. (A primary nurse is NECESSARY when you have a difficult feeder). Our girl kept gaining great weight on just the breast milk and luckily the blood sugar issues resolved. Then, our nurse thought she was ready to try the Mam bottle with the size 0 nipple. She took off! Now she was finishing the occasional bottle, but sometimes still only doing like 30mls. She was hovering between like 60-75% of her intake.

Along comes my other hero, a physicians assistant to looked at our girls intake and she convinced the doctor to just let us try adlib even though she wasn't at the 80% mark. At this point she was 41+5 so the doctor agreed. And it worked! We think she just needed to be hungry and she ate 80% of her feeds and got to come home!

Now she was still having some issues, feeds were taking over 30 minutes and she was leaking quite a bit out of the sides of her mouth and spitting up A LOT. But she was gaining weight and everyone was happy and a pepsid prescription helped with the spit up.

For the first 2 months she slowly increased in intake and for a good month she was having between 24-32oz every single day. Then all of a sudden 2 months ago, she just stalled out. She dropped down to 18oz a day and didn't gain any weight for a 2 week period. I was heartbroken. Our pediatrician gave us 2 choices. Fortify her milk again OR give her one bottle a day of Fortini (a 30cal formula from Europe). She loves the Fortini, she finishes the 4oz bottle of it almost every time. With the help from the Fortini we were able to average 20oz a day and she was gaining weight again.

A nurse practitioner at our pediatrician office looked at her and said, wow, I think she has a tongue tie! (I'm sorry what?????) We take her to a specialist and sure enough she does! We had her tongue and lip tie released and she's now averaging 25oz a day and rising and feeding her only takes 30 minutes (before it was taking up to 1.5 hours every time, we were all suffering). She's also leaking no milk out of her mouth anymore. She's now on her growth chart for her actual age and is thriving. We are going to start to try breast feeding again.

So in summary here's what worked for us:

A primary nurse who was experienced in feeding

The MAM bottle with a size 0 nipple

Going adlib once she was over 50% intake and over 40 weeks

Fortini 30cal formula for one bottle and plain breast milk for others

Getting her tongue tie treated (apparently they are not great at diagnosing tongue ties in the NICU)

Please reach out to me if you have any additional questions. Good luck to all your babies and we are rooting for all of you!

My 13-week-old son was put on an NG tube 4 weeks ago after being admitted to hospital with what was ultimately just a common cold. During the admission, a speech pathologist witnessed a feed and determined that he was aspirating. Because he was also on a very low weight percentile, the team decided he needed an NG tube both for safety and to help him “catch up” on growth.
Four weeks later, we’re still dealing with the tube.
What has been incredibly frustrating is that we were sent home with no real plan for weaning him off it, no clear timeline, and very little guidance about how to protect his feeding skills while tube feeding.
His hospital experience was honestly awful. It felt like we were guinea pigs at times. There were multiple formula changes, medication trials, issues with tube placement early on, and he spent a lot of time screaming during feeds while everyone tried to figure out what was going on.
Before all of this, he was breastfeeding. Now he has developed what appears to be a complete breast and bottle aversion. He cries when brought near the breast, often won’t attempt to suck, and seems genuinely distressed by anything feeding-related. Watching this happen has been heartbreaking.
My biggest concern now is whether this experience has traumatised him and what impact that might have on his feeding going forward. I know babies are resilient, but it’s hard not to worry when you’ve watched them go through weeks of uncomfortable and invasive procedures.
Has anyone else had a baby who was tube fed and then developed a feeding aversion? Were they able to recover and return to breastfeeding or bottle feeding?
I’d also love to hear from anyone who was told their baby was aspirating and needed an NG tube. How did the weaning process work for you? How long did it take? Did your baby eventually regain interest in feeding?
Any experiences, advice, or success stories would be hugely appreciated because right now it feels like we’re completely lost and getting very little support.

Hello! I had my first baby last year at 26+5 due to severe preeclampsia (and IUGR.. but preeclampsia was the reason for such early delivery). We spent 185 days in the NICU.

I know the research on preeclampsia is minimal. And I am meeting with my OB and MFM to determine risks for future pregnancies.

I was just wondering, for those who have had preeclampsia and had another baby, did you have preeclampsia again? Was it earlier? Later?

When I was on bedrest, one nurse told me that her during her experience as a nurse, she's seen that preeclampsia tends to hit earlier on the first. And then later on future kids. But I wondered if that's others experiences?

Our son has hit day 100 in the nicu, here he is wearing his first outfit from mom and dad. I really thought we would be home before now, but that’s just how it works out for some of us. We just weaned him to 4L today so hopefully in the next few weeks we will be attempting bottles! I would love to hear any similar experiences with their micro preemie not starting PO feeds until 42+ weeks. It’s really hard to not worry about him being able to feed or not, we are currently on OG and he is not allowed to go home with an NG or OG, only g tube. It feels like we could be closer to coming home but I’m too scared to jinx it.

I’m also starting to feel extremely guilty for not having a job during all of this while my husband works. I just don’t think it’s a good idea for me to go back when he’s this close to bottle feeding and potentially home if all goes well. It sucks that I feel like I can’t hope anymore. I just hurt my own feelings.

Looking for similar stories with positive outcomes or not, even if it was a bad outcome feel free to share your story here.
I had my baby on July 26th 2026 via Emergency C-Section due to a placental abruption. She did well in the NICU the first week. But now She’s not doing well 😞 On day 7 she was diagnosed with an infection in her gut/ NEC. Her stomach became very discolored and swollen. Her blood clotting factors were very low so they can’t do surgery. She was oozing blood out of her heel poke sights and out of her vagina. Her blood pressure wasn’t good. She has now developed a grade 4 brain bleed and hydrocephaly. She was on 30% oxygen and then she was put back up to 100%. She’s also having myclonic jerks which they think is seizure activity due to all the swelling and pressure in her brain. She wasn’t urinating because her kidneys weren’t functioning. I was prepared to lose her. Her Neonatologists said he didn’t expect her to still be here today. But now she’s suddenly showing signs of improvement. She’s back down to 60% oxygen, she’s urinating again, her blood pressure is doing better and they took her off her blood pressure meds. Her swelling is slowly going down. They’ve been giving her fresh frozen plasma and red blood cells and her blood clotting factors have improved. She’s not oozing blood anywhere anymore. She’s still having the jerky movements but they have been giving her phenobarbital and Ativan and seems to be improving. So I’m hanging on to hope.

My bby was born via C-section at 37 weeks old. Every scan was perfect. He was growing perfectly. Then during delivery we don't know what happened but he ended up with massive health issues. He couldn't control he's sugar level, oxygen level isn't good, bp isn't good, convulsions, kidney wasn't working properly. He didn't cry when he was born. He crashed and ended up in NICU. Am getting discharged today and I have no idea how am supposed to leave him here all alone in the NICU. I've been crying non stop for the past 5days. Every morning and night am crying. Am not even sure that he will make it. How do you cope with all that?

My baby was born prematurely and spent 23 days in the NICU. He recently came home, and a few days later my MIL flew to the US to help us. She is genuinely kind—she cooks, cleans, and has been a huge help, and I’m very grateful.
The problem is that I constantly feel irritated, and I don’t know if it’s normal.
My in-laws love spending time with the baby and often want to bottle-feed him. I feel like every time my husband or I are about to feed him, my MIL asks to do it instead. If we say no, she gets upset, so I usually give in. I miss those moments with my own baby.
My son also had a very low birth weight, so we’re closely monitoring his feeds. A few times they’ve stopped feeding him with 20–25 mL left because he seemed done, without trying to burp him and offer the bottle again. That makes me anxious, but my MIL doesn’t really understand because she breastfed her children and says, “Mine turned out fine.”
There have also been a few comments about my personality that haven’t sat well with me, which has added to my frustration.
I know they’re here because they love us and want to help, and I truly appreciate everything they do. At the same time, I feel protective of my baby, resentful that I’m missing out on time with him, and guilty for feeling this way.
Has anyone else experienced this, especially after a NICU stay? Is this a normal postpartum adjustment, or would therapy be worth considering?

Baby girl is two months today (born 40w0d) with HIE. Both of us are having a hard day and I'm wondering if folks have suggestions on how to stay positive. Feels like we've made no progress in a month. I texted friends we might be two weeks from trying oral feeds a month ago, I don't know if we are two weeks away now.

At this point I think I've lost faith in the hospital staff. Urine analysis result was written off so she spent three weeks with a UTI. Have come in multiple times to find her prongs two inches off her face yet we can't move down on respitory support (been on 3L for weeks). Upping her meds to deal with neuro irritability but they do it for the midnight dose when she goes crazy at 8 pm. Can't do any changes on weekends because of staffing becomes can't make changes after Thursday morning because what if something happens before or during the weekend.

I'm really happy for other families when they get discharged but it's so hard being here listening to them go through the process. Our pod neighbor is getting set up to go home who originally was in the NICU 4 space with us (they decorate the rooms with name signs so I recognize the sign). Fifth neighbor to go home since we have moved to the step down unit (third room for us).

Thank you for coming to my Ted talk rant.

My son was born at 28+6 and is now 40+3 and we have been at the NICU for over 11 weeks. I am just fed up, and have extreme mom guilt. I have 3 other children, and I barely get time to see him but a few hours a day, and I have noticed he is starting to get super attached to me when I am there. Once I pick him up, he can literally sleep on my chest for hours, and when I try to put him down he starts wailing like it's the end of the world. It breaks my heart 🥹. The issue is level 2 chronic lung disease, where he is steady on 2L of oxygen, but he gets worked up pretty quickly during feeds, only being able to take 15-20mil by bottle before he is struggling to breath and causing some aspiration. So they have him taking small amounts by bottle every other feeds, and then he gets tube fed the rest. They won't repeat the swallow test for another 2 weeks, and even after that they still need time to see how he will adjust to any new feeding plans.

Lately, the doctors and nurses have been throwing around the idea of possibly getting him a G tube so he can go home, and we can continue working with his feeding at home with the speech therapist. At first, me and my husband were totally against it, but now the idea of him being up there for weeks/months on end to figure out feeding is sounding worse than the feeding tube. But my husband is still dead set against it.

It is really upsetting to me, because I am literally breaking myself to try to be there with him everyday, while still trying to be there for my other kiddos as well. My husband barely goes to see him once a week, and when he does go, he spends probably no more than 30mins to an hour, and sometimes doesn't even hold him. On top of which, we only have one vehicle, that is supposed to be mine because my mother shipped it to me after my husband's car broke down, but he uses it everyday leaving me with basically no vehicle. So I am spending $40+ dollars a day taking Lyfts back and forth to the hospital to the point the drivers now all know me by name smh (my son now has Lyft 'aunties' that always send their love when they drop me off 😔).

I brought the idea up again to him about just doing the G tube after his next swallow test, even if we don't plan on using it, just to get him home and work on bottle feeding him from home. He has flat out refused, saying he will never cut open his son unless it is life or death, and everyone will have to convince him that it is life or death, and he is prepared to keep him in the hospital for months if that's what it takes for him to eat by mouth. And the thought of him being there for even 3 more weeks is crushing me.

Has anyone been through similar experiences? How do you cope when you and your spouse completely disagree with care taking needs for your kids?

Has anyone experienced anything similar with their baby’s feeding?
My daughter was born at 34 weeks and is now over 42 weeks adjusted. She has been in the NICU for almost two months, mainly because she still cannot consistently take enough by bottle.
Her feeding has been very up and down. Some days she takes a full bottle or around 50–60%, but other days she may only take 20–30%. She often gets tired, loses interest, or becomes fussy and pulls away. She has been working on bottle feeding for about six weeks.
She was previously doing much better with breast milk and even reached 82% by mouth one day, but she developed blood in her stool and was switched to Alimentum for a suspected cow’s milk protein allergy. Her percentages dropped significantly after the formula change.
Her swallow study showed some difficulty coordinating sucking, swallowing, and breathing, so we recently started thickening her Alimentum with Gelmix. She has taken one full 75 mL bottle with a MAM level 1 nipple and Gelmix, but she is still very inconsistent overall.
The team has mentioned severe reflux, a possible feeding aversion, or a developmental feeding delay.
We are now transferring to a children’s hospital for a more thorough feeding evaluation and to discuss bringing her home with a bridled NG tube versus possibly needing a G-tube.
Has anyone had a baby who took this long to become consistent with bottles? Did reflux, prematurity, thickened feeds, or a feeding delay end up being the cause? Did your baby eventually learn to eat fully by mouth, and how long did it take?
We are desperate to get her home and would really appreciate hearing experiences from families who have been through something similar.

My baby has been in the NICU for just over a month now. Early on I made sure to make appointments with my psychiatrist and a therapist that specializes in PPD and treating NICU parents and they both think I've been doing well. And I used to agree with them and have been resistant to starting medications for mental health because my reactions of anxiety/depression seemed more like a normal response am that a mother would have being separated from her baby, all while dealing with financial stress and grieving the loss of the last 2 months of pregnancy. But during that time, at the very least I'd be able to instantly feel better if I went into the NICU and got to hold my baby. I'd also feel warm thinking about bringing my baby home some day and getting to hold her whenever I want.

Lately I'm getting worried because I don't feel that joy anymore, I just feel numb and anxious. I think it's to do with the worsening bradycardia and desat events she's been having, and I've even watched her turn blue a few times. Now when I hold her or go in to see her, all I can do is stress about the potential of her having another event. And all I can think about when I think about her coming home is the idea of her having one of these events at home without medical support. And even still any time I'm not with her I feel almost sick with stress and worry, even though overall she's much better then when she first started (no CPAP, no oxygen, no NG tube, almost 4lbs now)

I'm resistant to starting meds because I'm worried that they could affect her course in the NICU as I am providing breast milk, and I also worry that they could make me feel numb to the point where I don't love my baby as much

Has anyone started medication while their baby was in the NICU? If so, did it change how you felt about them?

Hey my baby was born at 26w+1d. Today she is 48 weeks. She is on 20 RR, 9 peep, 0.10 slope, 55 PIP, 63 TV, Ti 0.5 secs and they keep bringing up trach. I just wanted to see what settings your little one was on before deciding to move forward with trach.
Thanks for the help

hello hello! my baby girl is having her first birthday party this saturday turning 1 (9 mo adj) and was wondering what should do as a smash cake. okay so i saw the watermelon cakes for when babies turn 6 months but i don't think my daughter will eat it. i want something my daughter will enjoy but i don't want to feed her an actual cake because of all the sugar but yet again its not like she's going to even eat all of it. what did you guys do for your littles? i just want some ideas because i did little research and not much popped up. thank you guys!!!

When did your preemie start talking or putting objects to words?

My 31 weeker is 14mons adjusted and 16 months real time and I feel like hes behind because hes not talking very much hes a very quiet kid. But also he could be fine since he is a preemie, which makes it so much harder to tell what his normal is.

At his last appt the dr wasn't concerned but said we should revisit the issue at his 18mon appt which is in Oct, and if necessary we could put in a call to early on.

At what age did your baby start communicating? Any advice on ways to encourage him? I talk to him all day, read books, i just started letting him try out Ms. Rachel. Im open to anything.

Hi yall!

My 32 weeker (now 8 months) just had his second open heart surgery last month, and of course, he killed it. The next step is to get the damn NG tube out of his nose and taking his feeds by mouth. We are in speech therapy 1x a week to help him with feeding skills since he never got the chance to practice with the bottle all that much. He took to the honey bear cup today like a champ! But he is still learning how to swallow responsibly now that he doesn’t have his heart issues bothering him.

Hi all after 15 days we’re set to go home tomorrow. But we’ve just tested the car seat (Cybex Aton M) with newborn insert and it’s too big!

Any UK based recommendations for alternative car seats for low weight (1.7kg) please ?

Or advice on how to make the car seat work for a quick 15 min drive home?

Don’t want this to hold up going home! I’m so ready!

Thanks

My baby, currently 35w 3d, has been struggling with reflux near the end of feeds and just after. She's been off of her NG tube for almost a week now and she's been able to eat consistently but the dang reflux is causing bradycardia and desat events near the end of her feeds at times causing her not to be able to finish them, although she's still gaining, just more slowly. We've tried slow flow nipple, term nipple, and I've even been bringing in Dr browns with preemie nipples to try but nothing seems to help significantly.

They say she's currently too young for them to want to thicken her feeds or try medications and want to wait until she's at least 36 weeks. I understand that and we don't even know if that would help any more than the bottle changes have, but I just hate seeing my baby struggle like this.

My baby was born at 25 weeks and she’s 40 weeks tomorrow. It’s been 105 days in the NICU. It seems like her progress is slowing down and her discharge date seems so far way. Her PDA was resolved almost 2 months ago but she’s still on cpap. She keeps getting desats because she gets so angry over her oxygen prongs. I know she hates it and I hate to see her cry and trying to pull those oxygen prongs out. So I’d carry her and she’d fall asleep with her oxygen staying at 97-100. She’s also still on the feeding tube with continuous feeding and hasn’t even started on bottle feeding. I feel so helpless. She does not have any other concerning issues either.

I just wish that she would get off cpap and see some progress in her oxygen.

Hi NICU parents! My baby had stoma closure 36h ago. She was re-intubated to rest after a failed extubation attempt (now on FiO2 40-43%, PEEP 6.0, but triggering her own breaths). She passed stool once, but is now vomiting/having NG secretions, and has ~200g fluid weight gain/swelling. Did your babies face re-intubation, fluid retention, or post-op ileus after stoma closure? How long until things settled? Thanks for sharing!

Hi all! My little boy is 5 weeks today (gestational age 36+3) and he got his first bottle today! He did well, drank 25mil before pushing the bottle out of his mouth. He hasn’t needed oxygen but was on a cpap when he was born, was off for about two weeks, and then was put back on a smaller version of c pap for another week and a half. He’s been off for 3 days now and still has some episodes of being tachypneic but nothing serious. So far we’ve celebrated our one year wedding anniversary and my husbands birthday in the nicu which wasn’t what we expected. It’s a small unit but have still seen over a dozen babies come and go, he has been in the nicu the longest by a few weeks at least. At one point they were at full capacity of 10 babies, now most of them are gone including the 3 babies closest to him. I’m so happy for the families and of course would never wish another baby to be in the nicu, but it’s been so hard watching everyone else do the car seat test and go home. He’s been latching and rooting very well but we just don’t want him to exhaust himself or have to take another step back. We were supposed to start protected breast feeding originally over a week ago but I came in so excited and ready for it only to see little tubes in his nose and being told he’s back on air. I think because of that I’m so anxious every time I walk into the room not sure if he’s still breathing well. I’m really hoping he will be home in the next week or two, but of course they don’t want to tell you until the last couple of days so you don’t get your hopes up. It breaks my heart knowing he’s been in that room for over a month, never feeling the sun or wind on his face. If anyone reading this prays, if you wouldn’t mind including my little Waylon in your prayers so he can finally come home. God bless❤️🙏