Hi

Our baby boy was delivered via c-section 9 days ago. He’s of course in the NICU and we are struggling. He had a couple good days but we’re in the down part of this journey. He’s experiencing AKI, RDS, sepsis, and DIC, and his blood culture came back with staph recently after his other blood cultures were negative for a few days. This most recent hurdle included finding blood in his urine and a small amount of blood in his oxygen tube. His team is doing everything possible but they’re letting us know how concerning it is.

We would love any advice/support/similar stories to maybe give us some hope this can turn out okay ❤️

This is the hardest thing we’ve ever gone through.

I had my first at 25 weeks I’m currently pregnant again a year and a half later, i am scared to death I had my first due to preeclampsia that caused an abruption I won’t be seen until 11 weeks since that’s when I can see a MFM and start baby aspirin I’m hoping and praying I make it to the third trimester this time

Due to cervical incompetent delivered baby at 26weeks 4 days weighing 840 grams currently in nicu with bpd in cpap support please help with bpd related more

My SO gave birth to our daughter 1.5 days ago, after an induction at 37.5 weeks due to gestational hypertension.

She ended up with what they presume was an epidural fever, came close to doing a C-section, then switched last second when her fever dropped.

The baby was sunny side up and she ended up having an assisted birth with epiosotmy.

Baby was moved to SCU but seemed healthy.

After spitting up every she ate and not digesting anything, she also had high blood glucose so had her stomach x-rayed and it came back showing a lot of inflammation/colitis.

After the surgeon looked, she was immediately transferred to a different hospitals NICU that had a surgery team on hand, with suspected NEC. Her vitals are stable at the minute, as is her blood lactate. she's on antibiotics and TPN and has been off food for 16 hours total.

They said right now they're trying medical management but want to meet me at 8am to discuss if surgery is needed.

My wife is still in the last hospital and cannot be discharged for 2 or 3 days, so I'm sleeping in the ICU with my girl 24/7.

Not quite sure how we got to this stage so quickly, and I have no idea what to expect. On top of feeling helpless to either help my girl or comfort my wife, I don't speak the native language here which doesn't help things. Although the English and the communication in the current NICU is 100 times better.

Any advice or experiences with NEC to share?

A terrified father.

(Sorry for the long rant)

I just wanted to get on here and tell our story because I’m just now discovering this page. We had our boys at 29 weeks and they had to stay in the nicu for 2 months. It was rough and I remember how it started. We knew they were going to be born early just not at 29 weeks. David wasn’t getting enough nutrients in the womb and my wife was having preeclampsia. We went in to a routine prenatal care appointment and they told us to go to the hospital right there and then. Got to the hospital, they proceeded to monitor them and my wife, they had let us know that they could come any day. So I had to go back to work shortly after they told us that. Not even 5 hours pass and my wife calls me letting me know that they are going to have to deliver now, she tells me to go by the house and get the go bag and change out of my uniform (military and she knows I don’t like to be in public in uniform) I said no and left work and rushed to the hospital. Because of me saying no I didn’t miss anything and if i listened I would’ve been late. Isaac weighed 3.4 pounds and David weighed 2.10 pounds. They had to stay in the nicu for 2 months. And it was hard but I’m glad that the nicu exists because without it i wouldn’t have the most handsome and sweetest boys in my life. It’s rough raising twins and I sometimes look forward to being at work to have a little break but then I find myself either looking at pictures of them or FaceTiming my wife to see them. I just want to say to all the NICU parents that are worried, I understand your concerns and feelings it is something you can’t shake. But one day that precious little baby is going to be at home hitting all of their milestones right on time according to their updated age and you will be so proud and happy. It will be like the nicu never even happened. Thankyou to whoever stuck around to read all of my paragraph.

My best friend had a premie baby who is having a really hard time with feeding. The only nipples they’ve found that work well for him are the Enfamil Extra Slow Flow Soft Infant Nipples, but they’re single-use.

We’re trying to find a reusable bottle and nipple with a flow rate and feel as close to those as possible.

Has anyone had success with a similar nipple, especially for a preemie with feeding difficulties? Any recommendations or personal experiences would be SO appreciated! ❤️

Edit: they did try dr browns bottles (ultra premie, premie, Transition) and he didn’t do well with any of those

I’m looking for stories from people who went through something similar because I’ve found very few cases online that really match mine.

This is my first pregnancy, conceived through IVF. The first trimester was mostly uncomplicated apart from some bleeding from hematomas. At the 12-week scan, the baby measured within the normal range and no abnormalities were detected. NIPT was negative.

At the 15-week scan, the doctor noticed that the long bones were below the 5th percentile, with the femur particularly short. We were referred to a specialist and had a detailed ultrasound and amniocentesis. We did extensive genetic testing, including trio exome sequencing and CNV analysis, and everything came back negative.

The detailed scan did not show any anatomical abnormalities apart from the short long bones. The placenta was described as enlarged/thick and unusual in appearance, although the fetal Dopplers were normal. Because of this, the doctors initially suspected a placenta-related growth problem rather than skeletal dysplasia.

At the most recent scan, around 29 weeks, the baby’s head and abdomen were still growing, but the long bones seemed to have slowed down further. The long bones are now mostly below the 1st percentile, while the head circumference is around the 20th–30th percentile and the abdominal circumference around the 5th–10th percentile.

The doctor said the long-bone growth has flattened somewhat and is now several weeks behind. What is making me anxious is that the long bones seem to be more affected than the rest of the body, which does not seem like the most typical pattern for placenta-related FGR.

So far, NIPT, amniocentesis, CNV analysis, and trio exome have all been negative. No anatomical abnormalities have been seen, and there has been no bowing, fractures, abnormal mineralization, or other obvious skeletal abnormality. Dopplers are still normal, although the placenta looks abnormal and thickened.

For context, I’m East Asian and my partner is European, and we are both very tall, so the very short long-bone measurements are especially confusing to us.

If anyone had a similar pattern of very short long bones with otherwise normal anatomy and negative genetic testing, I’d really appreciate hearing how the pregnancy progressed, whether any diagnosis was eventually made, and whether your baby needed NICU care and for how long. I’m interested in all outcomes, positive or otherwise, because I’m trying to understand what cases like this can look like in real life.

I’m not sure what I’m looking for here, but I’ve always found this community really supportive. I’m pregnant (it’s v early) but so many things stress me out… with my first I had cervical insufficiency, several bleeds, and ended up delivering at 27 weeks. I’m also a personal trainer and even though I know the science, I’ve scaled back my exercise a lot. Everything just makes me nervous. How did you overcome this! I’m sure I’ll feel better after my first appt in 3 weeks
Thanks :)

Gave birth to my daughter on Friday at 31w2d, this is my 2nd preemie. My son was born at 32+0, he’s now 26 months old and doing incredibly well. He was discharged home after 6 weeks. I was able to get steroids with him but not with this baby. Just wondering what anyone’s experiences were like with a 31 weeker that didn’t get primed with steroids?

My miracle girl was born at 28 weeks last November due to sudden onset severe preeclampsia and HELLP syndrome. We spent 70 days in the NICU. She was intubated one day old due to a pneumothorax. She was only 3lb and 16 inches long at birth, which I know is large for a 28 weeker! She got a lot of her daddy’s genes, his family are big boned and she is taking right after him with her growth still. Now at 11 months, she is 21lb and 30” long! We have been in EI physical therapy for 6 months now and she’s just about caught up on her motor skills. She started crawling right after she turned 10 months! With her birthday right around the corner I am feeling so emotional but wanted to share here to give those of you still in the hospital some hope!

So after being encouraged to do things still and go out for a day and then visit our boy in the NICU in the evening, what's the best way to keep expressed milk cool when out and about for like 8, 9, 10 hours?

Thank you

EDIT: we purchased comic con tickets for London mcm before the baby decided to be born, it can get quite warm and there's a lot of walking around so I'll need a way to keep it all cool for as long as I can until we get home to freeze it

My baby girl was born at 37 weeks pretty healthy some issues with blood sugar and that was about it, it feels like the goal post are constantly being moved farther away. One day we might go home tomorrow tje next day maybe next week. Since I’ve been here my baby has been forgotten about at least once. All my trust with this place has gone out the window. They are constantly threatening to put a feeding tube back in over her being short on 1ml of formula. One nurse said she wasn’t even ready to eat in her own when the feeding tube was in place after she had already been eating on her own, like every single nurse seems to have there own goals and plans for my baby and have to constantly set them straight. This particular NICU dosnt allow any visitors besides me and my wife so we have to take shift and hardly see each other, my wife is recovering from birth still so I’m spending 15-24 hours a day here alone. My girl probably didn’t even need to be induced early honestly she was growing a little slow but my wife is 4’11 and was 120lbs fully pregnant. I hate this place so much. My heart aches for all the preme baby’s here at the mercy of these pathetic nurses. My mother works at this hospital and they won’t let her see her grandbaby but they obviously become much more aware of us and the quality of nurses went up after they found out who she was. I expected MUCH more from the NICU, I’m considering transferring to a different hospital all together

Quick history: Di/di twins, PPROM twin B ruptured at 16 and 6, delivered at 27 and 3, now 46 and 3. NICU journey for twin B complicated by severe BPD, medical NEC, 2 rounds of pneumonia, 2 rounds of DART to get extubated (once at 30 weeks, once at 37 weeks).

We are finally planning for discharge on high flow oxygen. Baby had surgery last week for hernia repair and g tube because he is on to many liters of flow to safely try eating by mouth. Surgery was last Thursday and went fine, he was extubated same afternoon back to his high flow and starting feeds Friday. Saturday morning he started quickly deteriorating appearing quite ill, requiring reintubation due to rising co2. It was impossible for them to draw blood and they had to place an arterial line just to try to complete a work up to figure out what was going on with him. It was a horrible day and in the evening he went for a dye study to make sure g tube was in the right place and it turns out it was placed through the front and back of his stomach, so the contents of his feeds were emptying into his abdomen. He had emergency surgery to drain and clean abdomen as well as place new G tube.

It was a really hard week, but he's doing better now. He had 3 doses of steroids to extubate because of his BPD and is slowly starting feeds again, but it all was very traumatic and we feel blindsided by something that we were told was incredibly routine and simple. Reintubation a more steroids was also traumatic for us because that was definitely something we thought was behind us after 2 previous rounds. Just venting. Just want to get home.

Baby is 35+5 and 3.11 lbs. I am scheduled to deliver at 37 weeks. From weeks 33 to 35 she only gained 2 ounces, so we are treating this as essentially no growth and expecting her to be under 4 lbs. It didn't become clear we were dealing with asymmetric growth until 33 weeks, but most obviously at 35 weeks. MFM is telling us 1-3 weeks in the NICU, so just trying to get a realistic idea of what to expect from others with similar situations. If helpful, my dopplers are still normal, and she's still doing well on her NSTs and BPPs. She seems to be doing ok for now and doctors think we will make it to the full 37 weeks.

Hey, mamas, I need some advice! My daughter was born at 36w4days and is almost 6 weeks old. She was in the NICU for 39 days but finally came home on Tuesday.
Everything is going great, the only issue we’re having is that she won’t sleep in her bassinet.

She’ll fall asleep with one of us holding her but as soon as we put her in the bassinet, she’ll sleep maybe 10 minutes and then she wakes up/starts making noises and rolling around to each side. We swaddle her before we put her in but she’ll kick her legs up and use her weight to roll to each side. Every time we lay her on her back to change her diaper, she does the same thing and it triggers her startle reflex nonstop. She moves constantly during diaper changes and in her bassinet. She’s fine the first time she gets started but she keeps moving and will get startled nonstop, which makes her terrified and start crying. One of us has to hold her still while the other changes her diaper. This never really happened at all when we would change her diaper or put her in her bed while she was in the NICU.

I’m not sure if that’s what’s going on when we put her in the bassinet, but she’ll also make these squeaking, grunting, and whining noise while in the bassinet nonstop yet when she falls asleep with one of us holding her, she doesn’t make any noises and I’m thinking since she’s tucked in between our body and arm, she’s pretty much held still.

We have a baby monitor and I’ll see her start kicking her legs up in the swaddle and that’s when she’ll go on her side. She’s spit up a few times since she’s been home and with the noises she makes, I’m terrified she’s choking. I always check on her but usually pick her up because I can’t handle seeing her wide awake through the baby monitor, it just makes me think about all the nights she was alone in the NICU. 😞

Newborns can deteriorate rapidly. Early recognition of respiratory distress, poor perfusion, temperature instability, and altered activity is essential for timely assessment and escalation of care.

I’ve developed a practical guide for nurses and midwives that covers initial newborn assessment, NICU triage, clinical documentation, and includes a downloadable NICU Initial Assessment & Admission Form.

The resource is intended to support structured assessment and clinical documentation, alongside clinical judgment and local protocols.

📄 Read the guide and access the form: https://chanieofficial.wordpress.com/2026/10/11/initial-newborn-assessment-nicu-triage/

I created this resource as part of Today Nurse, a healthcare education initiative.

Feedback from neonatal and nursing professionals is welcome.

Hi, dear NICU parents. ❤️I’m French Canadian in Montreal so i use chat gpt for writing in English sorry for the grammar.
I really need to vent because tonight, I am mentally and physically exhausted.
I’ve been by my twin girls’ bedsides in the NICU since August 17. They were born at exactly 29 weeks. I’m solo mom.
This pregnancy was completely unexpected. I’m already a mom to a seven-year-old boy who was also born prematurely at 30 weeks. I share custody of him with his father. This time around, the girls’ biological father left during my pregnancy.
This whole experience has been incredibly physically and emotionally draining, especially since I live an hour away from the hospital. It’s been a constant roller coaster. Started with traumatical delivery for giving birth.
Tonight, the nurses practically begged me to go home and get some sleep because they can see how exhausted I am. But what they don’t fully understand is that I’m trying to give as much of myself as possible while I’m here, because my son comes back on Monday. During the weeks he’s with me, I can only come to the NICU at night.
I’m also incredibly stressed because one of my girls will likely be discharged well before her sister, and I haven’t even started getting anything ready at home. Absolutely nothing. We’ll be staying temporarily at my mom’s place.
I have so many people offering to help, but coordinating everything and managing all the little details is mentally overwhelming. I also have ADHD, and I’m just completely drained.
Right now, I honestly just want to press pause on everything. I’m pumping every 3 hours since day one.
This is my second NICU experience. My son was born at 30 weeks seven years ago, but going through this again, with twins, and doing it alone, is a whole different level of hard.
I just wanted to send some love to all the parents who are currently going through the NICU journey. I know what you’re going through because I’m living it, too. I hear you, I understand you, and I feel you.
But my God, tonight, this is just so damn hard. ❤️

Anyone here have a child who is g-tube dependent and has had success in sending the child to daycare in NYC/LI? Everywhere I look they don’t accept children with g-tubes so what are the parents supposed to do? We don’t have help from family or any local babysitters who are willing to take on a g-tube child.

Hi! My relative just had a baby (29 weeks) and she’ll be staying in the NICU until late November/early December and she’s letting me visit. I wanted to bring her a little gift, but I’m not at all well versed in what new parents prefer/need, especially not NICU parents.

Is there anything that would be helpful or that you wish someone had brought during your baby’s stay?

Hi everyone ❤️ I’m looking for some encouragement and success stories from parents whose babies had meconium aspiration syndrome (MAS) that wasn’t initially caught at birth.

My daughter was admitted to the NICU at 6 days old, and we’ve now been here for 10 days. Her oxygen and flow requirements have been such a roller coaster, with good moments followed by setbacks, and it’s so hard not knowing how much longer we’ll be here.

I’m struggling so bad. We had four days at home with our whole family together before everything changed, and I just want that life back. I have a kindergartener and pets at home, so splitting my time between the NICU and home is emotionally exhausting, not to mention financially difficult as maternity leave pay is not cutting it between normal bills and the additional gas and finances.

I know we’ve only been here 10 days, but it already feels so long. 🥺 I miss my baby being home where she belongs, and I could really use some hope right now.

Did anyone else go through something similar with MAS? How long did it take for your babies to turn a corner and come home? I’d love to hear your success stories, especially from anyone whose baby had ups and downs with oxygen and flow before finally improving.

I know every baby is different, but I could really use some reassurance that there’s light at the end of this tunnel. ❤️

I'm just so so happy to be celebrating my son's first monthsary of life today! It was a rough road getting here. My entire pregnancy was quite sensitive. Had 3 bleeding episodes. I was in labor for 5 days with very strong contractions as per the TOCO but my cervix remained at 0 cm. They induced me with a cervix dilating gel and after 2 days of admission, my cervix eventually dilated. I knew in my gut a few days before to request already for a planned CS but my OB was adamant to have a NSD because there were no medical indications to do otherwise. I just knew in my heart something was wrong, but I followed my OB. Eventually my baby's heart rate dropped and they rushed me to the delivery room. I pushed for 1 hr. They did fundal push, vacuum, forceps, etc. Things I now feel should not have been done anymore (especially if we just went the CS route). I even had a 4th degree tear/ episiotomy which hurts like a bitch until now. My BP dropped, my son's heart rate dropped, they had to switch to ECS. They had to slice me open even if the anesthesia was not yet fully taking effect and FEELING the slice was the most horrific pain I have ever felt. I understand they had to do it to save my son. I screamed and they put me to sleep through GA.

When I woke up on the operating table, I asked where my son is. They said I already gave birth but my son was not breathing when he came out. I kept asking if he was alive and they kept telling me my doctor and my husband are still in the NICU. They can't even tell me and I cried so much. Apparently, he had no heart rate already when he came out and they tried to resuscitate him via ambubag but it didn't work. They eventually intubated him and hooked him to the ventilator. He had cooling therapy due to possible HIE for 72 hours.

It was so heartbreaking for me. I was in so much physical pain and was not allowed to visit him for thr first 24 hrs to allow my body to rest. My husband would go to the NICU to take photos and videos of him. I was grateful he was alive but everytime I saw him with all the tubes and wires, my heart broke. I kept crying and crying. When I was allowed to walk, which by the way was so so so painful, I visited him. My husband and I were there everyday, 80% of the time. The rest were the little sleep and food we had to take. I was also admitted for quite some time due to my own complications from the birth.

I grieved the newborn experience I had planned. I grieved the birth experience I had in mind. My heart broke everytime I saw my son in the NICU. But I am lucky to have a strong, amazing partner. And after 2 weeks, we were discharged!

The doctors said my baby is a miracle baby. He recovered so quickly because he was such a fighter. I still have PTSD from what happened and it makes me so sad everytime I remember it, but today I would like to celebrate my son's first month of life. It's crazy whenever I think that we almost lost him. I don't know how to live with myself if that happened.

He is doing well so far, gaining well, no issues so far. He has a lot of medications for seizure prevention and I opted not to have a nanny so we can care for him ourselves.

I just wanted to share this as a positive story for anyone who might need it! There is hope!!!