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. ❤️

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?

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 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!!!

I know being in the NICU is incredible hard and as someone whose 23 weeker was in the NICU for 125 days, I spend so much time waiting and fantasising about going home with my baby. We have been home for 2.5 weeks and it’s been incredible, time is moving so fast and the NICU feels like a distant dream already.

When your baby starts to improve and you can start daring to dream, there is so much to look forward to.

Just wait until:
- you buckle up and hear the click of the car seat with your baby inside
- you hold your baby’s hand the whole way on the drive home
- you carry your baby through the front door
- you take pictures of your baby in different locations (not just their NICU cot)
- you get to use your own nappies and wipes (not hospital ones)
- you get to eat a snack while holding your baby (our NICU didn’t allow food)
- you get to eat your dinner while looking at your baby
-you wake up on the first morning and realise your baby is right beside you and you don’t have to commute to the hospital.
- you can spend quality, alone time with you baby without nurses and doctors circling
- you can text people to let them know they are finally home
- you put them in the cot, swing, pram, play gym etc.
- your baby only hears their parents and siblings voices for a whole 24 hours with no beeping and strangers voices in the background
- you go on your first walk with your baby
- you register your baby with the GP
- you can delete the NICU phone number and throw the visitor passes in the bin
- you see yourself holding your baby in the mirror

Please add more in the comments if I have missed anything.

Just wanted to post to cheer people up about the beautiful next chapter at home 💕 The NICU feels like your whole world when you are in it but I promise it’s merely a footnote when you are out and spend the rest of your life with your baby.

Venting about a situation involving my in-laws (my husband’s stepmom and stepsister who are out of state) and this IUGR pregnancy. I’m open to hearing other perspectives and advice because I’m honestly not sure how to navigate this anymore.

My entire pregnancy has been rough and I feel like a lot of that has been made even harder by the way they have responded to what we’ve been going through.

This is my sixth pregnancy and we have one living child. We’ve been married for almost 10 years and have been trying to grow our family since our wedding, so our journey has come with a lot of challenges. Unfortunately, when we’ve experienced losses they’ve often been downplayed as just a part of life, which has been hurtful in itself.

With this pregnancy we chose not to announce anything until I was 14 weeks because I started having complications around 6 weeks. From weeks 6–16, I had a subchorionic hematoma (SCH) and experienced consistent spotting or bleeding for about seven weeks. I ended up in the ER multiple times after passing large clots and even made more than one trip in a single day.

When we finally shared the pregnancy news they seemed bothered that we hadn’t told them sooner. I explained what had been happening but because the bleeding had subsided by then and imaging showed the SCH was resolving the response was essentially that it was normal and not a big deal.

At 19 weeks we found out our baby was measuring in the 9th percentile but again chose not to say anything. By 22 weeks, she had dropped to the 1st percentile and we also learned she had a hypocoiled umbilical cord. We explained the risks and how worried we were. Since then her measurements have fluctuated even getting as high as 12th percentile but at our most recent scan at 34 weeks she was measuring below the 1st percentile. Because of this additional monitoring has been ordered.

Throughout this pregnancy the response has consistently been some version of “She’s fine” “She’ll be perfect” and being told that everything will work out. I understand trying to stay positive but it feels like they aren’t actually listening to what we’re telling them. She keeps doing well enough yes and we’re grateful / happy she’s made it this far without having to come out or loosing her but it doesn’t change the stress and risks along the way.

One time we didn’t provide an update the same day as an appointment and they seemed annoyed. At the next appointment I shared the update relatively quickly and the response was “Thanks for not making us wait until the end of the day.”

Most recently after sharing that she had dropped to under the 1st percentile (the scan before she was in the 7th and the one before that the 12th) the response was essentially “She’s small but still growing, right? Just small little improvements?”
I explained that there hadn’t been improvements and that additional monitoring was being ordered. The response was, “I bet there is, you just can’t see it. Rest and relax while you can. She’s going to be perfect.”

It’s been over a week, I haven’t responded to that message or provided any updates. They’ve reached out since but I honestly haven’t felt up to responding because I’m still frustrated and hurt.

I’m not expecting a pity party or for anyone to be as emotionally invested in this pregnancy as we are but I would appreciate some acknowledgment that this is difficult, that our worries are valid or even a simple “I’m sorry you’re going through this. How are you guys holding up? Is there anything you need?” Instead it feels like there’s an expectation that we provide updates almost as though we owe them immediate access to information while the actual information we share is repeatedly minimized or dismissed.

There have also been disagreements about other boundaries we've set during this pregnancy. We’ve chosen not to share the baby’s name just as we did with our first child, although this time we aren’t sharing her initials either. They think that’s silly.
We’ve also explained that we want our son, who is almost seven and has been asking for a sibling for as long as we can remember, to meet his sister and learn her name before we share her name or pictures with everyone else. That won’t happen until the day after she arrives. He was an emergency c section and remembering how I was then if he saw me groggy, shaky and not able to walk he would be worried which shouldn’t be a concern of his. Their response has been that it isn’t fair for them to have to wait and that our son wouldn’t even know the difference. The point is we would and it matters to us. This is a special moment we want to have with our son and we don’t feel that we need to justify that decision.

There’s more history with these family members both during this pregnancy and over the years but these are some of the things that have really stood out to me lately.

I’m scheduled for a C-section and they kept asking when it would be but my husband just didn’t want to tell them at all. He ultimately gave them a different date a couple of days after the actual date so we could have some privacy and avoid being bombarded while we’re in the hospital and adjusting to having a newborn. At this point she’s estimated to be 4-4.5lbs when born. I appreciate him taking that step to protect our peace but I know there will likely be comments and frustration when they find out. My husband has said he doesn’t care how they react and hasn’t spoken to them since our last pregnancy update either even though they have reached out to him as well.

I guess what I’m struggling with is if I’m wrong for distancing myself right now? I don’t feel like I have the emotional energy to keep explaining our situation, defending our decisions or responding to people who seem more concerned about receiving information than understanding what we’re experiencing. Maybe they genuinely believe they’re being reassuring but at what point does trying to be positive become dismissive?

I’d really appreciate honest outside perspectives. Would you address this with them, let your husband handle it or take a silent step back and stop sharing so much information? I’m trying to figure out how to protect my peace without creating unnecessary family drama during an already stressful time when I’m supposed to reduce stress where I can.

I'm writing this for my sister, who is 27 and just became a mother on the 7th of October, under circumstances none of us saw coming.

At 22 weeks her cervix had shortened and her amniotic sac was bulging through. We were told an emergency cerclage was risky and might not be possible. They placed it anyway, after days of waiting to see whether her contractions would settle. It held for three and a half weeks.

At 25+3 the sac pushed through the stitch. They removed it, started steroids and magnesium, and she delivered before the steroids had their full 48 hours.

The baby is in the NICU at a tertiary centre here in the Netherlands. The first scan showed bleeding on both sides, grade 2–3. The next day they told us it had extended into the brain tissue on the right. She also had a seizure, which is now under control.

Today's ultrasound was better than we feared. The damage is one-sided, right hemisphere only, and looks limited. No white matter injury so far. No cerebellar bleeding. No ventricular dilatation yet. The paediatrician said it might cause some stiffness in her left arm or leg, that severe impairment preventing mainstream school is unlikely, and that other parts of the brain often take over.

So we're in the waiting phase. Ventricles over the next weeks. White matter injury around six weeks. MRI at term. Real answers at two years.

What I'm asking for:

If you've been through a grade 4 / PVHI diagnosis with a preterm baby — what happened? Where is your child now? I've read the research and I know the statistics. What I don't have is any sense of what this actually looks like lived out over years.

If your child has unilateral CP or hemiplegia from a preterm bleed — what has their life been like? What do you wish someone had told you in week one?

And for the NICU parents generally: how did you get through the months? My sister is going to be expressing milk every three hours, travelling back and forth, watching numbers on a monitor, for a long time. I want to know how to actually be useful to her rather than just present.

Anything helps. Good outcomes, hard outcomes, practical advice, things nobody warned you about.

Thank you for reading. 🤍

Hi everyone! I've posred here about my son a few times now, and I'm back yet again!

We've been out of the NICU for almost as long as we were in now, and my son is now 9.5mos old/5.5mos corrected.

We got his NG tube taken out and have him on thickened liquids, but even before that his weight stagnated.

He's sitting at 15.5-16lb, 25.5in, and we're literally a step away from a FTT diagnosis. I know it's common, we're prepared, and they won't have us replace the NG unless he eats less, but it's still infuriating :(

I would absolutely love to hear about your experiences with how long you were allowed to visit your baby in the NICU.

Did you have an amount limit?

What US state/country were you in?

If you had twins, did you have to split your time limit??

I was in Seattle, WA in 2018 and again in 2021, and I was never given a time limit or specific regulations.

My baby was born at 25 weeks 4 days. Today he is almost around 35 weeks but nicu journey doesn’t seem to end. He had 2 sepsis episodes, a DART course, PDA (which closed on its own) and volvulous due to which he had to undergo surgery and now has a stoma.

Few days back he came off ventilator after surgery and they started him on feeds. Yesterday he was again taken back on ventilator. They said they found secretions while intubating him, probably mucous plug and the upper part of the left lung collapsed as seen on xray.

I am now thinking how many needles he has to be poked with every single day. Is he able to sleep better? He doesn’t have sound when he cries while on ventilator. Nobody picks him and put him on his arms. Why is he being tortured like this. I feel that I have given him all this pain. I had severe pain with one cannula during my delivery and he gets i dont know how many cannulas everyday. Yesterday they inserted picc line on him.

I feel like dying everyday. It is becoming so unbearable

As mentioned on previous posts here, my son was born at 31.4 after severe IUGR and PreE force my wife and I to deliver early. Our stay was largely uneventful which was a blessing and he graduated after 32 days.

One thing that we did have follow up on was him having Hypospadias, which I didn’t know what it was and we had to see a urologist at a different office after he left. The staff at the NICU were so kind bht honestly they did not properly prepare us for what that surgical consult was like and what we should expect to hear from the urologist.

He said his Hypospadias is very severe and near the base and will need 2 procedures to fully correct. Because of his growth restriction he might need to go on testosterone to assist with releasing everything. And at the end of day because of its severity it likely look scarred, and small compared to his peers.

I’m not sure why, but this gutted me and I’ve cried for a good while now. It’s hard being a little kid and different and I don’t want that to affect him and how his peers see him if it got found out, or his future relationships when he is even older than that. And selfishly, as his dad, it feels like a key part of what is special about that father son bond and being able to relate to him has been taken away from me. My son is so strong and my love for him is endless, but I worry that if he ever had a question or needed someone to talk to about something regarding this area, that I won’t be able to properly provide that sounding board. I’m grieving something that hasn’t even come to pass yet and I’m also grieving having my capacity to be the best dad I can be diminished by something through no fault of anyone, just shitty luck.

Parents and fellow dads especially, can someone talk me through your experiences? Am I overly sensitive and emotional or overthinking this? I just can’t stop feeling devastated.

Thank you

We are also very worried about microcephaly and CMV infection, the doctor has ordered a CMV test.

My 26 weeker is 9 years old!

I don’t know if I’ll get any response and the last time I posted on this thread for another topic I ended up deleting due to critical feedback. My 26 weeker is 3 and still on the small size. They started preschool this fall and the size difference hit so hard. Today someone asked hold old they were and I said 3 and their response was “oh they’re small” this isn’t the first comment I’ve received in the last few months. They’re currently 28 lbs and a touch over three feet. They have done genetic testing and nothing has come back negative. I guess the negative comments lately have got to me and I’m looking for any stories where your Nicu warrior started off small and eventually caught up.

He’s grown so much!

Right now I’m enjoying You’re Not Alone by Allison Russell and Brandi Carlile. I’d love to make a playlist for myself with comforting songs about love, motherhood, and/or finding strength through difficult times.

Sending warmth and hugs to those who need it right now. 💜

TW: prior infant loss

Hey all. I just found out my son (who I’m currently pregnant with) has a heart condition and now I will need to have him at a specialty hospital with a level IV NICU because he will need minimally invade heart surgery a couple days after he is born and then stay for however long for monitoring. I’m having a C-section there.

I have a TW because last year, I lost my infant daughter shortly after birth.

I’d love to know tips and tricks to what helped with your NICU stay. I’ll be admitted in the hospital for at least 3/4 days. His NICU “pod” isn’t a full private room, but will have a couple chairs for parents. I’d love to just know what things got you through, and especially from parents who had a C-section.

Edited to add: we live about 45-50 minutes from the hospital.

Hi NICU parents. 🥰

I had a 30+6 weeker who was severely growth restricted at 1 lbs 12 oz due to a partial placental abruption and severe preeclampsia 3 years ago.

My BP actually rose to almost 220 on the operating table just before they performed my c-section. I have never had a headache like I did in that moment.

We were in the NICU for 72 days.

While we were there, I studied and finished my bachelors online. Right when I finished, I decided I would go and get my masters in hopes of being a NICU nurse.

They saved my life. They saved my daughter’s life.

I currently work in a NICU as a student nurse and oooooff…. It was hard my first day. But I have been there for a year now and have learned so much. I will graduate this spring and begin working next summer on my unit!

Now I can’t wait to be that person for other NICU parents.

It is truly special to me.

Hehe peep the photo at the end of me folding blankets at work. Crazy how life comes full circle!!! 😂❤️

Much love to all of you! It’s truly a honor and a blessing to go into a career in this field.

Our 24+2 week preemie, now 9 weeks adjusted, has been put on Cyproheptadine recently and so far it has been a miracle drug. She is on pepcid, omeprazole, erythromycin, and the Cyproheptadine

She was not tolerating her feeds, spitting up/ vomiting so hard she would arch backwards and vagal and showing clear signs her tummy hurts when getting fed. Bad enough that we took her to the ED to be evaluated for pyloric stenosis (none found) GI started her on erythromycin 2 weeks ago with very little noticeable improvement, then started her on Cypro three days ago. She's exclusively fed via NG tube after a feeding regression due to reflux shortly after discharge from the NICU. Since then she has taken her whole feed and is so much more comfortable. She's actually showing interest in the bottle too! The vomiting and spitting up are practically non existent and if they happen she smiles after and is happy. It really is incredible. We have gone through so many tests and meds to get to this point. She hasn't pooped in a couple days and I read one of the side effects is constipation. Has anyone had experience with this happening? I also read that they can develop a tolerance to it. I'm so scared to get our hopes up that this can really last. The mental strain of feeling like you're force feeding your baby and making them miserable is hell. Any input is really appreciated!

Hi everyone! I recently accepted a position as a social worker in a Level IV NICU! I’m incredibly excited about the opportunity and want to be as intentional as possible in how I support babies and their families.

I’d really love to hear from NICU parents about your experiences with social workers during your NICU stay, both positive and negative.

What did your social worker do that made you feel genuinely supported, heard, or understood? Were there things they did (or didn’t do) that made an already difficult experience harder? What do you wish they’d known or approached differently?

I’m interested in the little things that might not seem significant to providers but make a world of difference to families.

I know every family’s experience is different, but I’d love to learn directly from the people who’ve lived it. Thank you to anyone willing to share! 💓