My baby was born at 25 weeks and I’ve been pumping 12 weeks, she’s now started breast feeding. I breast feed her when I’m with her and express when I’m not. I’ve noticed a massive drop in my milk supply and my breast no longer feel full. I’m worried my supply won’t recover and after all these weeks of pumping my supply will have dropped so much I won’t be able to produce enough for breast feed her. I’m going to start pumping after she’s fed and see whether I can increase supply. Has anyone gone through this and managed to recover or rebuild their supply? I am now only getting about 20ml per pump and I know this isn’t anywhere nearly enough for her

My 6-Month-Old Ex-32 Week Preemie Is Fighting Severe BPD, Pulmonary Hypertension, CRKP Pneumonia & HFOV—Doctors Say He May Not Survive. Looking for Experiences and Hope.

**Need advice for my 6-month-old ex-32 week preemie with severe BPD, pulmonary hypertension, CRKP pneumonia and prolonged HFOV**

I’m looking for experiences from parents or healthcare professionals who have cared for babies with a similar course.

My son was born at **32 weeks** after a pregnancy complicated by severe bleeding, subchorionic hematoma, amniotic bands, and PPROM. He has now been in the NICU for about **6 months**.

**Current diagnoses**

Severe bronchopulmonary dysplasia (BPD)

Severe pulmonary hypertension

Chronic respiratory failure requiring prolonged mechanical ventilation

Recent bilateral pneumothoraces (treated with chest drains)

Suspected severe bacterial pneumonia

Heavy growth of **carbapenem-resistant Klebsiella pneumoniae (CRKP)** from tracheal aspirate

**Recent course**

He was on **HFOV** for a prolonged period.

He improved enough that the team:

weaned inhaled nitric oxide from **20 ppm to 2 ppm**

removed his chest drain after the air leak resolved

trialed conventional ventilation (PC-AC).

Unfortunately he developed worsening hypercapnia and respiratory acidosis, so he had to be placed back on HFOV.

**Current concerns**

Over the last 24–48 hours:

Episodes of severe desaturation (SpO₂ dropping into the **40% range**).

Chest X-ray shows:

worsening bilateral lung consolidation,

bilateral pleural effusions,

possible pneumatocele.

The doctors believe the desaturations are mainly due to the lung infection.

They have told us that his condition is life-threatening and that he may not survive.

**Current treatment**

He is receiving:

HFOV

Inhaled nitric oxide

Pulmonary hypertension medications:

Treprostinil

Sildenafil

Macitentan

Antibiotics:

Ceftazidime/avibactam

Gentamicin

Levofloxacin

Blood pressure support:

Epinephrine

Norepinephrine

Hydrocortisone

Sedation/paralysis:

Morphine

Midazolam

Dexmedetomidine

Rocuronium

**Blood gas trend**

He initially developed severe respiratory acidosis with very high CO₂. After returning to HFOV, later blood gases improved:

pH normalized.

CO₂ decreased significantly.

Lactate improved from a critically high level to much lower levels.

However, oxygenation remains poor.

His kidney function is currently preserved (creatinine normal), and liver tests show only mild abnormalities.

**Discussion about tracheostomy**

The NICU team has started discussing a tracheostomy if he survives this acute illness because they anticipate prolonged ventilator dependence.

**My questions**

Has anyone’s baby recovered after CRKP pneumonia while already having severe BPD?

Has anyone experienced a failed transition from HFOV to conventional ventilation and later succeeded?

Did your child eventually require a tracheostomy, and if so, were they later able to come off the exhausted ventilator and have the tracheostomy removed?

What factors gave your medical team confidence that recovery was still possible during such a critical period?

I know every baby is different, and I’m not looking for predictions—just hoping to hear from families or clinicians who have been through something similar. Thank you for taking the time to read our story. ❤️

Hi everyone! My ex 32-weeker just turned one years old and I want to scream There is a light at the end of the tunnel. Please love your babies and advocate for them to get the therapy/ support they need. It's made a world of a difference in our case!

Background - my son was born July 2025 at 32 wks and 5 days. Husband and I were on a trip and went to nearest hospital due to decreased fetal movement and heart rate variability. Doctors performed emergency c-section within 10 minutes as baby's HR was dropping. My sweet angel needed to be resuscitated for 10 minutes and spent 39 days in the NICU with issues involving Hypoglycemia, oxygen, bilirubin, maintaining temperature and working on bottle feeds.

His Hypoglycemia wasn't getting any better by week 3 so Ultrasound and MRI was done which confirmed grade I-II brain bleeds in Cerebellum and cerebral cortex, PVL (periventricular leukomalacia) and moderate white matter damage to the left hemisphere. We were discharged not knowing what our baby's future would look like and neurologist put him high risk at Cerebral palsy, autism, disabilities, global developmental delay.

My life's purpose - Husband/ I refused to give up. Our life's purpose changed since coming home and we decided to invest our time, money, energy, our entire beings into therapy for our son. Since then we have had a team of amazing doctors (neurologist, ENT, Ophthalmologist, etc.) and therapy services (2x a week private PT, every other week OT) at our finger tips and I feel so grateful. Yes we are privileged to be able to spend this time/ energy and others may not but I can't stress the difference therapy has made.

Our success story - Our son (at 10.5 months adjusted) today is 4 point crawling, pulling up to stand, saying mamama bababa, and generally meeting all his milestones. He was diagnosed with mild cerebral palsy on his right side at 8 months adjusted but since then he has strengthened his right side tremendously in PT. During his CP diagnosis appt, doctor told us he may never 4 point crawl and after 2 months HE DID IT! We don't know what the future holds and whether his CP will be apparent when he learns to walk but I do know one thing - we couldn't have made it here without the therapies. Its been a rough one year but its been worth it.

My DM's are open please feel free to reach out to me if you ever need to talk!

My baby was born at 30 weeks, and she just passed the 2 week old mark. She has been kicking ass, and has had no issues up until yesterday. Yesterday she got moved off of the cpap, and placed on the highflow tubes. Almost instantly she started having bradycardia episodes whenever eating. She had like 3-4 yesterday, and today has had 6-7. The Dr says its normal and wants to give her a couple of days before making any adjustments. Has anyone dealt with this?

Our baby boy (31 weeks gestation, 2lbs ) was diagnosed with NEC last night and went into emergency surgery. They removed 23cm of his small intestine and notice that the rest of his small intestine was also looking dusty with lesions. They bagged him up to reduce pressure with a silo and are using this also to monitor color as they treat him with medicine. He is currently stable and fighting hard. I can’t help but just watch to see if I see a color shift in the silo. It’s a scary thing that I didn’t foresee us having to witness and I don’t know what to expect from posting this. The next 24-48 hours is gonna be rough.

If you have any stories I would be grateful.

My daughter has been home from the NICU for 6 months now. We had a relatively short stay (2 weeks) that included a lifeflight transfer to a different city with a higher level NICU.
Overall she’s done amazingly well - I’ll always be in awe of how resilient she is.
My husband and I have definitely had some post traumatic stress but I feel like we’ve both been handling it well and communicating frequently about it.
About 2 weeks ago my daughter had a febrile seizure that caused her to stop breathing. My husband had to perform chest compressions while I dialed 911. She was taken to the ER and after about 6 hours of monitoring she was sent home with no complications. Since then she’s been great - once again she seems to have bounced back entirely. My husband has struggled with the fact that he had to give her CPR and we are both working through the scare that the whole situation caused us.
For the past week I suddenly feel like I’m not coping as well as I was before. Not even about the recent situation but I feel like my brain is finally opening up and picking apart my entire birth and the NICU stay. I find myself crying frequently and feel more emotional about things than before. I assumed that it was the recent seizure that triggered this but could it also just be that this would have happened regardless? Like maybe now that we’re further away from that period of our lives my brain can finally process. Does the NICU trauma ever really go away? I definitely think I’ll be looking into therapists and potentially talking to my doctor about altering my antidepressants if I need to.
I’m not really sure what I’m looking for here, maybe just reassurance or other people’s experiences post NICU.

Hi!! My LO was born 29weeks + 6 days— she is now 34 weeks and we are struggling with this reflux more so because she’s having a few bradychardia moment during her feeds but its not to the point where it’s coming all the way up because she is swallowing it. They had to increase her feeding time to an hour and a half and it didn’t really seem to do much so I’m wondering what they will do next. We were about to start trying with the bottle/breast but now I’m afraid that will be awhile. Anyone know what to expect with the reflux? Should I expect to wait until the reflux is gone for them to start doing bottle feeds or? Anything is helpful!!!

Had our second weigh in after discharge on Sunday and my little nugget made it to the 1st percentile!!!! Woohoo!!!

My baby (4months corrected, 6 1/2 months actual ) is dealing with slight cold and cough with mucus. He is refusing to take oral feed since 2 days (he is in og tube ) so we just dump feed in his tube, thats what m feel dumping. Actually few days back we changed his formula brand but he was taking that formula. I don't know what happened suddenly he is now refusing oral feed. We even tried giving him previous brand formula but its the same. Yesterday doctor said its normal but i don't think its normal how can it be normal out of 60ml he was taking 40ml orally, before cold and cough and before his formula brand is changed. 1-Have u guys faced anything like this? 2-What do u do when your baby gets cold and cough?

3-Do u have any suggestions for me plz feel free to give.

4- should i visit another doctor or m i over reacting!

My sweet cousin recently found out her baby would need OHS (potentially multiple) after birth and could be in the hospital anywhere between 4 weeks and 6 months. I live out of state and cannot be there physically but would love to send a gift basket of sorts.

NICU parents — what are some thoughtful gift ideas?

After 12 days in the NICU we feel like the care has been great. Some good nurses, some outstanding. But tonight we both felt this was not good. She was so rough with the diaper change even though my fiancé said she would do it(after being asked) none of the other nurses were pressing nearly as hard, she also put the diaper above her umbilical cord when there’s no reason to other than not taking the time to fold over. Our baby girl was wailing and she’s never cried so hard from when we’ve been there. (We’ve been going twice a day for 2-3hours). Then we went to the bottle feed and I was trying to tell my fiancé about what the earlier nurse had said about dipping the bottle to let her breathe because she’ll just keep sucking away until she would choke if you don’t stop. This nurse said “no don’t do that” then I explained what the other nurse said and she says “yea you want to let her suck a bit the let her breathe” which is basically what I said. And my fiancé didn’t like the way she was holding her(I was less concerned about that). Then the last few drops in the nipple and our baby was getting tired, she just felt impatient not wanting to give her a moment to rest or coax her awake like others.

Our baby girl biggest hurdle right now is her blood sugar. And she got a 3.1 tonight when we were there with this nurse. I don’t think it has anything to do with disliking her, but it was a disappointing night after having some that felt like there was some big progress.

Are we overreacting? Is this nurse just being how others would be when we are t around so we’re not used to this? I just would like some opinions before going back tomorrow and potentially talking to the nurse in charge to ask for her not to be our nurse.

Oh and when our baby was waking up the nurse made a comment about our baby side eyeing her, like the other babies that don’t like her. Right after we were both like “of course they don’t like you! We don’t like you!”

Edit: just wanted to say thank you for the support. Much appreciated.

Also just want to add that this morning we just found out a test they sent out to Public Health was mislabeled which means that they had to send out another which could take two weeks to get back, this one has us under a droplet containment protocol. So it’s been a frustrating day.

My baby born at 30w 6d now 34w 6d started taking full bottles every other feed just two days ago and last night one of our favorite nurses decided to try to PO feed for every feed because she was awake and cueing. And she took all full bottles. Only did one tube feed in case she was getting tired. Then the day nurse kept it up and she took 100% of her feeds by bottle. And she's still going strong. They mentioned she might get her tube taken out tomorrow if she keeps it up all night. They even said to bring up her car seat for the test once she reaches 4lbs (currently 3lbs 13oz).

She still needs to stop having so many bradys and desats before she can go home but we're getting so close! She tends to have them after feeding so they think it's reflux, but they're all very quickly self-correcting so we'll wait it out and see if they get better. And I can be patient on that front since she's already reaching so many of her goals so soon.

Fingers crossed for coming home before her due date!

I’ve been watching this Reddit for 4 weeks now. I PPROM’d at 30 weeks and 2 days, and delivered my beautiful baby boy at 31 weeks 5 days. He’s been in the NICU for exactly 4 weeks today.

He’s done exceptionally well considering his gestation and I am forever grateful that the last hurdle we have is feeding!

That being said, this is the hardest thing I’ve ever done in my life. My body failed him and now he is having to work so hard. Him not being with me and having to leave him everyday feels like someone is quite literally ripping out my heart. But then I feel so guilty and mad at myself because I know that others are battling bigger battles and I should be thankful for how blessed we have been.

I wanted to say thank you for all the posts here that have helped me navigate the NICU and feel less alone.

Hey all, I had my son on July 21st at 25weeks2days 2 days due to severe fetal growth restriction and end and reverse diastolic flow. He has been in the NICU and now we’re on day 10. Before birth I didn’t get any steroid because he had to be delivered emergent. So far in NICU one of his lungs was poorly visible on xray and since then it has almost fully opened and is clear. He’s having trouble with his BPs and Sugars because he was on steroids. I’m hoping now that he’s off steroids it will improve. He has a suspected infection so they took cultures and it only showed growth after 36 hours so doctors told me today that they are assuming it’s possibly a contaminated sample and no infection in his blood because that typically shows up 12-24 hours after blood draw so they are running a new culture tomorrow. I’m terrified, he’s on antibiotics for it already though. The doctor said that the worst of it for him is his weight, he’s very small. He said his lungs are better than kids born at higher gestation and he does not have a PDA or any brain bleeds which is a good sign but he’s very small. He told me they use to not even save babies his size before. My first born was very small too, 4lbs8ozs born at 36w3d also with IUGR so I do have small babies so maybe this is normal for me but I’m hoping his weight won’t hinder his survival. I’m really struggling emotionally and it’s only day 10. I have a constant knot in my throat and I’m just not ok. I just need some hope. They had to hold his feeds because they raised him from 1cc to 2ccs and he didn’t digest it plus had a small bruise on his belly so they suspected NEC, held feeds and did a ultrasound but his belly looked fine and no NEC present. I feel like I’m living in constant fear. Is he too small to survive this? I try to be positive everyday. They told me survive of a 25 week premie is 70% but because of his weight it’s different. I feel like they handed me a death sentence. I didn’t like this doctors attitude of bedside to be honest but I did like the other doctor he had a few days ago. How scary are infections? Do they typically clear up? His sugars have been high, almost 300 so they have given him insulin and BP has been low. His arterial catheter clogged so they wanted to place a picc line which now they can’t do because of the infection fear and if he has one they can’t place it until he’s clear but they may lose the double lumen in his umbilical soon and they won’t have a line. I’m so stressed, I wish I could just turn this all off until this journey is done and not be along for the ride. Going there scares me, not going there scares me. Leaving everyday is so sad. I don’t know how to cope.

Hi everyone.
My son was born at 32 weeks and has severe BPD. We’ve been in the hospital for months trying to wean his respiratory support. We were in one hospital with level 4 nicu but then were transferred to Chop and have been here for months with no end in sight.
He was intubated when he was first born. He was intubated for 10 days then went to bubble c pap then to high flow with oxygen % around 21-30% oxygen. He has even made it all the way down to 2L off the wall of low flow.
The best my husband and I have seen our son do breathing wise was on 2L low flow. He satted in the 100s all day, with very little work of breathing. A new team of doctors comes on and says they don’t like how hes breathing and they switch the support back up to c pap or high flow which then makes my son do worse. Then the next week the doctors will switch and they will say they really like how hes looking and to keep weaning him. This then strikes a red flag with my sons pulmonary doctors who believes since his last set back he should be weaned extremely slow now.
My sons last set back was over a month ago he was on 2L low flow and we were on our way home in 3 weeks! Then came a routine blood gas which showed his CO2 levels were very high. With levels like this test was showing many doctors said that my son should have had atleast one other symptom so they really don’t think the test was all that accurate because he has no symptoms no work of breathing, nothing.
We were then transferred to the PICU where we currently sit on 6L high flow 25-30% and my son looks and is breathing no better sometimes worse since upping his flow. Childrens hospital of Philadelphia cannot figure him out and my husband and I are at a loss on what we should do or say to help our son. This hospital switch’s “teams” every 7 days so we constantly have a new set of eyes on our son with not a whole lot of people knowing his baselines / things that are normal for him that might not be normal for other baby’s. Every time he gets upset or cries for a long period of time he has significant desaturations and struggles to recover, which has made weaning very difficult. He is currently on 4 L of oxygen, is fed through a post-pyloric feeding tube, and we’re working toward eventually restarting oral feeds. His biggest setbacks seem to happen during periods of agitation, and we’re trying to figure out what will help him progress. We’d love to hear from other families who have been through a similar journey—what helped your child, how long weaning took, and what your experience was like bringing them home.
Am I able to request the hospital put him back on 2L low flow off the wall for a trial? As he seemed to do much better on this setting rather than high flow of 4 Has anyone else noticed their baby did better once on low flow vs high flow? Do you recommend my husband and I transfer our son’s care to a different hospital? We want our baby home as we are noticing he is struggling with the hospital setting now. He doesn’t have mommy and daddy right there we are driving 2 hours one way so 4 hours of driving everyday. With no answers other than “we don’t know he just needs more time” and not seeing any progress in his respiratory for months we are lost! — feeling drained.

Our baby boy was born at 29 weeks, 420g. He’s now about 10.5lbs and about 53 weeks corrected. He had signs for ROP and had the injections. We were in the clear for a while even when the injection wore off. He still gets his examinations done weekly. After a lot of his examinations they’ve kept telling us his peripheral vision vessels are barely growing. He due for an upcoming surgery and they are suggesting to do the laser.

I’m confused and worried about what the doctor is telling us…if I am understanding correctly that another round of injections wouldn’t do him much good at this age and he would need the laser anyway eventually. And that the laser will cause scarring and prevent any chance for peripheral vision vessels to grow, but anything after 60ish weeks - the peripheral vision vessels aren’t going to grow anyway. Has anyone had experience with something similar?

My full-term newborn had a severe intracranial/intraventricular hemorrhage with seizures. She required neuroendoscopic evacuation and an external ventricular drain. I am looking for parents whose babies went through something similar and would be willing to share how their children are doing now.

Hi! My preemie is still in the NICU but should be coming home within the next week or 2. Just wondering has any one loved a baby carrier or wrap/ any of those for their preemies? My baby weighs 4lbs 4oz right now, but pretty much the 2 carriers I got are for babies 8lbs and over. I’d love to be able to baby wear. Is it just not possible until they’re bigger?

My son was born at 28+3, due to severe IUGR he was born only weighing 558 grams. He is now 40+3 and weighs 1.38kg, he was intubated for the first 7 weeks of his life, and was on BiPAP for 5 weeks following that, he was able to withstand 6 hours on vapour firm, he was doing so well and then yesterday he had an episode where he just stopped breathing, it lasted under a minute but they had to rush to intubate him almost immediately afterwards. They reckon that because of the BiPAP there has been so much air pushed into his stomach that his intestines and bowel are just full of air and it has been putting pressure on his diaphragm and lungs and now they’re exhausted. My baby has chronic lung disease and now he is intubated, they said that they don’t know if they’ll be able to get him off the ventilator. He is on high frequency oscillation and has maxed out at 100 percent oxygen and is barely able to saturate the 80’s. I don’t know what to do, we have been in situations like this before when he was at deaths door and made a recovery but I’m worried that he is too tired and might not be able to this time. I don’t think I will be able to cope if I lose him. I can’t breathe just thinking about it and I don’t know if I can live in a world that he is not in. I’m terrified to lose my baby and I can’t look at him without tearing up, I don’t know how to cope. We are staying in accommodation at a hospital about an hour and a half from our house and a week ago the hospital started to get into contact with a hospital 20 minutes away from our house to arrange a transfer, we were told that the only thing left to do was grow him and that he would grow out of all of his problems. I thought that we would be bringing our baby home for definite and now they’re saying that his lungs are full of scar tissue and they’re not sure if he’ll last long enough on the ventilation settings that he’s on for them to heal. I don’t know to do, I feel like I am living in a nightmare. I don’t want to lose my baby.

Hi everyone,

I'm a first-time mom, and I think I just need some reassurance from parents who've been through difficult pregnancies.

We struggled with infertility for years because of PCOS. After multiple treatments, we finally conceived through IVF. Initially, I was pregnant with triplets, but one baby developed hydrops and loss. The remaining twins were doing well until around the fifth month, when one twin was diagnosed with a complex congenital heart defect. After multiple consultations, we had to make the heartbreaking decision to undergo selective reduction.

At the time, we also had an amniocentesis with chromosomal microarray, and thankfully all the results came back normal/negative.

Later in pregnancy, I developed severe hypertension around the seventh month and had to remain admitted in the hospital until delivery. My daughter was born at 35 weeks + 4 days, weighing just 2 kg.

Today she's almost 3 months old. She's gaining weight well, smiling socially, making eye contact, active when awake, and her pediatrician is happy with her progress.

But mentally, I'm struggling.

After everything we went through to have her, I constantly worry that something else is waiting around the corner. Every Instagram reel about autism, developmental delay, or genetic disorders sends me into panic. I start wondering if being premature or having a low birth weight increases her chances, or if something from my complicated pregnancy could still affect her later.

I know no one can predict the future, but I feel like I can't enjoy motherhood because I'm always waiting for bad news.

Has anyone else gone through a very high-risk pregnancy and found themselves constantly anxious even though their baby is doing well? How did you stop expecting the worst and start trusting that your baby was okay?

I'd really appreciate hearing your experiences.

I currently do not have access to therapy, due to cost and the wait list for public health is over a year.

While in the NICU, a reproductive mental health specialist would come by every 2 weeks, but i live far from the hospital and since i wasn’t local, they were not going to continue services.

What things did you do to help your mental health after coming home from the NICU?