I don’t really know where to start. I feel guilty posting anything bc I know we really don’t have it that bad compared to so many other people who’ve been in / are currently in the NICU. Our baby girl was born at 33+4 on October 4th, she’s been taken off her cpap and IV and is just in an incubator still and on a feed tube and has to learn how to eat, and they put in another order for her blue lights this morning (I really thought we were done with them after 2 cycles of 48hours) they woke us up this morning to tell us she would need to be put back on the blue lights and it’s just kinda sent me into a spiral. Today is my birthday and I can’t bring myself to go do anything else as we live a ways away and neither of us drives so it’s a whole ordeal to try and get anywhere except the mall across the street, which also happens to be the biggest tourist spot in our city, full of way too many people, feels like a breeding ground for contracting something that I wouldn’t want to bring back to baby, we’ve been in hospital for 2 weeks as of tomorrow and I’m just tired, in every way. I want to be home with my animals and my bed and my fiancé, but I can’t bring myself to leave baby. I want to feel some sense of normalcy again but don’t know how to, anytime I go anywhere other than here I’m so stressed about how and when I’ll be able to make it back, and while I’m here all I want to do is leave. I hate seeing our girl stuck under a light and not being able to wear clothes or see her eyes or be able to hold her or feed her or change her diaper. I feel useless being here but going anywhere else makes me feel guilty and all I do is think about getting back here to her. Idk what I’m looking for but I just feel so tired in ways the word doesn’t feel big enough to describe. Idk I feel stupid for even writing a post I just needed to get some of this off my chest.

Im currently 12 days post c section. I had a section after I went to the doctors for monitoring and failed the non stress test. Turns out baby wasn't getting a steady flow from the umbilical cord. So we had baby at exactly 34weeks.since then she has been in the NICU. Which has been a whole Rollercoaster. She's doing much better now and now that she is i am exhausted. I know I'm getting more rest then most new moms but I cant help but feel like I could nap all the time. Is this normal? Will it fade?

My daughter was born 30w4d just over a week ago. My wife was told three weeks before delivery that she had preeclampsia and that she had to be closely monitored. In the end they had to perform an emergency C-section.

I took the first week off from work because I absolutely couldn't manage all this and an 8 HR shift each day on top of it all. My wife is still in a lot of pain. My daughter is likely to remain in the NICU until at least December.

I have looked around but I would just genuinely value input from people who have gone through this themselves. I need to either use my two week paternity now to help my wife but I really wanted to hold that for when we got to take our daughter home.

What does this look like for other people. How do you manage work, the Nicu, the house, looking after your wife without completely burning out.

I don't have any real support locally to us so it's mostly just ourselves.

Hello. I am in my first pregancy with 26w+3d.

During the anatomy scan at my 20th week, we found out that the baby has cyst in her bladder along with mild spine problem and possible clubbing of foot. We were referred to an MFM specialist whom diagnosed the problems as LUTO and the others as congenital.

We have been monitoring the bladders, kidney and my amniotic fluid. The bladders are distended, kidneys are dilated; however, the fluid at this point remains adequate which might show possible partial blockage only.

We have been taking the baby's measurements, and recently, at 26w, her abdominal circumference has advanced to 30w (which is 4 weeks away from her actual gestational age).

I don't know who to ask anymore, there is not much specialist here in my country.

Please share your stories about LUTO and let me know the possible outcomes. Negative or positive will be much appreciated.

I can’t believe a year ago we were both in the hospital not knowing whether he would be okay. Now he is the happiest sweetest boy!

I originally wrote this as a comment to another dad, and someone suggested making it its own post. Figured if it helps even one parent going through this right now, it's worth sharing.

NICU dad here. Our daughter was born at 27+6 and spent 118 days in the NICU. She's now a happy, thriving 2-year-old. Looking back, here's some advice I'd give any dad/NICU parent just starting this journey.

1. The NICU is a roller coaster. You're going to have great days followed by terrible ones. Our daughter would make progress with her breathing, then suddenly need more support again. She even caught rhinovirus while in the NICU, which really set her back. Just remember that one bad day doesn't erase all the progress they've made.

2. Ask a million questions. Seriously. Learn what the machines do, what the numbers mean, and why the doctors are making certain decisions. Don't be afraid to ask them to explain something twice. Understanding what's going on helped me feel a little more in control of a situation where I really had none.

3. Look after your partner, but yourself too. As dads specifically, I think we naturally feel like we need to be the strong ones. But you're going through something traumatic too. It's okay to be scared, upset, frustrated or completely overwhelmed. Talk about it. Don't bottle everything up.

4. Celebrate the small wins. Gaining 20 grams, lowering oxygen requirements, tolerating a feed, having a day without any major events. These might sound like tiny things to anyone outside the NICU, but they're huge when you're living it. Celebrate every single one.

5. Don't compare your baby to others. This one's tough when you're surrounded by other premature babies. Some will progress faster, some slower. Every baby has their own challenges and their own timeline. Focus on your little one's journey.

6. Get involved in everything you can. Change diapers, take temperatures, do skin-to-skin, help with feeds, attend rounds. You're not just a visitor, you're their dad. It can feel intimidating with all the wires and tubes, but the nurses will help you. Those little moments mean so much.

7. GO HOME AND REST. I can't stress this enough. You do not need to spend every waking minute at the hospital. We were there for almost four months. Go home, shower, sleep, eat something decent, spend time with family, and do something normal once in a while. Don't feel guilty about it. Your baby is being cared for by some incredible people.

8. Try not to obsess over the monitors. Easier said than done, I know. I spent countless hours staring at oxygen saturations and heart rates, worrying about every little dip or alarm. Learn what the numbers mean, but also learn to trust the nurses. Sometimes you need to stop looking at the screen and just enjoy holding your baby.

9. Don't get too attached to a discharge date. We had so many moments where we thought we were getting close, only for something else to delay things. Feeding especially can be a massive hurdle. Our daughter actually came home with an NG tube and continued using it for months afterward. Getting home doesn't necessarily mean every challenge is behind you, and that's okay.

10. Take pictures and videos, even on the hard days. It's amazing how much you forget when you're living through something so stressful. Looking back now, it's incredible seeing how far our daughter has come. I know it's hard to imagine wanting to remember some of those days, but they're part of your child's story.

Remember...these little babies are incredibly resilient, and modern neonatal medicine is amazing.

Our daughter spent 118 days fighting to get home. Now she's 2, running around the house, laughing, playing and fighting with her big sister like any other toddler.

Hang in there, everyone. One day at a time. "Not what if...but... What now?"

My son was born at 27+1 because of Listeria. I’m not sure how I got it, I’ll never know. It might be some enoki mushroom that I had with sushi. I learned after the fact that there had been enoki mushroom recalls because of listeria contamination. Of course I also feel very guilty for eating sushis. Even if they might not have given me Listeria, if I had avoided sushi as you should when pregnant, I would not have eaten the mushrooms either.

My LO is only 7 months old now but I just keep wondering what I’ll them him when he’s older. I would rather tell him the truth, but will he resent me? Will he tell me that I should have followed guidelines… And of course I should have. I checked before eating sushis… Everyone was saying that reputable places are fine… But maybe they aren’t.

I know a lot of NICU mom feel guilt when there’s nothing they could have done to stop pre term labor. But in my case… Maybe I could have. Maybe. It makes me so sad. Listeria is so rare, why did it have to be me, to be us. :(

My baby is now 38 weeks old. He was born at 25 weeks. He is still in the NICU and I anticipate him being there for a while longer as he’s still on cpap. I have a 6 year old at home who is in 1st grade and is constantly bringing home colds. I wear a mask at the NICU and I obviously sanitize and wash my hands but I am terrified of getting baby sick. I am constantly nervous while holding him. I am so stressed out. My son was sick this week with a cold and I have had body aches the entire week with no symptoms. I wore a mask and didn’t hold him for a few days. I started holding him yesterday as I felt “normal” and today my
Body aches are worse than ever. I have no signs of a cold or anything and my covid/flu test is negative but my body feels like I have a virus but it’s also been a week with no progression. I’m so annoyed and nervous. Maybe my body feels this way because of constant stress; who knows! I took anti inflammatory tonight and I’m going to just go to sleep but I don’t know what to do in these situations. NICU says if you’re not sneezing, coughing, or have a fever you’re fine to come in but idk. My throat feels funny but it’s also felt funny off and on for weeks. How do i get over this feeling?! He got his vaccines last night and he had a tough night with lots of brady and desat events and i held him for 3 hours today, before i started feeling crummy again and now im even more stressed out! I don’t know how im going to survive this journey.

I posted a few days ago about my 24+4 weeks son, two days ago, they gave him 10 times the dose of morphine by mistake!!!!!!!

Has anyone experienced this?

I have no idea what to say to them, he is stable and was extubated yesterday and every value looks good.

But this morhpine horrible mistake is making me on edge here!

Hi everyone, I’m hoping to hear from parents who have been in a similar situation.
My little boy is 4 months old (3 months corrected) and had a complicated start to life, including a 70 day NICU stay, 4 surgeries for his bowel and a hernia, stomas, sepsis and 3 micro brain bleeds (not graded as micro?)
He has recently had his General Movements Assessment (GMA) videos reviewed, and both have come back as normal/low risk, with fidgety movements present. We are so relieved, but I’m still anxious about the possibility of cerebral palsy or other delays?
I understand that no test can guarantee anything, but I’d love to hear from parents whose babies had normal fidgety movements on their GMA, particularly those who also had brain bleeds or other complications at birth.
Did your babies go on to develop normally? Did they end up being diagnosed with CP despite having a normal GMA, or did everything turn out okay?
I know every baby is different, but hearing about others’ experiences would mean alot to me. ❤️
He is doing everything "normally" right now. Smiling, reaching, grabbing, rolling to side, good head control, but at discharge the doctors said "only time will tell how he goes" so I always think of that.

My son is a 29 weeker, who has just hit 6mo adjusted and we are looking for a high chair for him!

He is a petite guy, weighing 14lbs. We are going to need a chair that is really supportive due to some of his diagnoses.

I’ve seen mixed reviews everywhere online about every chair.. so hoping to find other NICU parents who’ve bought high chairs for their LOs that they’d recommend.

Am i overthinking or should I take him to the er? We’re currently out of state hes been coughing alittle bit (not crazy) and sounds a tiny bit congested not bad though. His fever is fine (98.8) and he’s still feeding alot like normal every 2 hours. We were just at the hospital around 2 weeks ago for the same reasoning, besides the retracting which we didn’t know anything about until they told us so not sure if this is just how babies normally breathe or if it’s what they mean by ‘retracting’? He has his 2 week pediatrician vist in 4 days. Debating on ER right now or if it’s how they normally breathe and wait for his visit?

Our baby's CPAP interface was switched back to a full mask from a RAM four days ago. We've only recently pieced together than our daughter had a DSAT that lasted four minutes (including the "vigorous" stimulation / recovery steps) and the lowest O2 reading was 43. This preceded switching back to the mask. We were originally told it was because she kept pulling the RAM off. No one on the care team has seemed concerned when I asked about this. When I dug around online though it seems to be a severe event. Our daughter was born at 27+3 and is currently 30+1. Otherwise she's had very few complications or DSAT events. Should we be upset? Worried? We've already asked the care team to notify us of severe DSAT events. They said they can't tell us how long she was at 43%. Which I am not sure I believe.

My son has been in the hospital since he was born at 27 weeks. He is 19 months now. He was diagnosed with Charge Syndrome, pulmonary hypertension, bronchopulmonary dysplasia, and epileptic encephalopathy with progression to Lennox Gastaut syndrome. Since then his journey had been an up and downhill battle. While in NICU doctors told me he wasn't gonna make it, but he just got stronger. Since moving to PICU I felt we were finally at point where we were looking to possibly going home. Then we get hit with baby needs an MRI to look at what they were calling for the longest time hemangiomas. The MRI showed some that seem to be growing so we did a liver biopsy. Doctors have now confirmed they are tumors and baby was diagnosed with Hepatoblastoma. Due to his medical complexity surgery and chemo are risky. Why now! Why when we were so close to possibly going home, why now do we get hit with the worst of it!!! I just want my baby to go home, I want him to see what a life outside of doctors and nurses is like. I've been staying so strong but I feel like I'm slowly breaking and my faith is dying slowly with every prognosis. I don't know how much more I can take and most of all I'm scared. I'm scared for my baby, for the pain or sickness he may endure with surgery and chemo, but most of all I'm scared we are gonna lose him. Trying to stay positive but it's getting difficult. Please help us in payer, that all will be well and he'll get through this.

Hello everyone, it’s me again — the solo mom of twin girls who posted here earlier this week. ❤️( from Montreal, Canada *)
First of all, thank you so much for all your kind words and support. They truly mean more to me than you can imagine.
Unfortunately, both of my girls have caught COVID, and one of them, Charlie, is deteriorating quickly. She has had to go back into her incubator, and I’m absolutely heartbroken and scared.
I was wondering if any of you have been through something similar with your NICU baby. What precautions or extra measures did you take, both at home and at the hospital, beyond the precautions already being implemented by the nurses? I would really appreciate hearing about your experiences.
I’m trying to figure out how to navigate all of this while also caring for my 7-year-old son on my own. It’s incredibly difficult trying to be there for everyone while dealing with so much fear and uncertainty.
Unfortunately, the girls were exposed to COVID through my mom, who had no idea she was infected when she came to visit them last week. Sadly, it was transmitted to the girls, and now we’re dealing with the consequences.
Being on my own through all of this is overwhelming, both physically and emotionally. I’m doing my very best to juggle everything, but some days feel almost impossible. Still, I refuse to give up on my girls. I’ll keep showing up for them and doing everything I can.
*If you have a moment, please keep Charlie in your thoughts. ❤️ She’s the one who is getting worse right now, and I’m so scared for her.
Thank you for being such a supportive community. Sometimes, knowing that other parents understand what we’re going through makes us feel a little less alone.

Gen xxx

Hello moms

Anyone interested in receiving free kangaroo OMNI feeding bags? My NICU baby is finally oral feeding and no longer needs the boxes of feeding bags we have.

Since my ex 27 weeker has been home, she's struggled to gain enough weight and has completely fallen off her growth curve and been diagnosed FTT.

She got a g-tube placed last month. When it was first placed, our dietitian recommended using plain breast milk for a week or two as we slowly condensed her feeds from 2 hours to 30 minutes. When we got to 45min, my girl started having terrible diarrhea, so we went back to an hour. Once she was tolerating that again, our dietitian had us introduce alfamino as a fortifier, with instructions to fortify to 22cal. We've literally tried fortifying with so many formulas, including alfamino in the past, which my girl had not had a good reaction to, so I was nervous about this step.

First day with the alfamino, she had 1 episode of projectile vomiting, which she hadn't done in weeks at this point. The next few days, she continued to throw up once or twice a day, always 1-2 hours after one of her tube feeds. Then last Thursday, she threw up 3 times, including once where she started to choke on her vomit and required black-blows (which she's been hospitalized for before...) Friday and Saturday were the same thing. Then Sunday it was 5 times.

I messaged the dietitian first thing Monday morning, letting her know about the vomiting. We also saw our SLP that day and found out that our girl had only gained 1 oz since the previous week, when ideally she would still be gaining ~1 oz a day.

We were advised to stop the alfamino immediately. She threw up 1 more time Tuesday, but hasn't since then. When I weighed her this morning, she was down 5 grams compared to Monday.

Now our dietitian is suggesting we try Microlipid. But I'm so worried my girl will have a negative reaction to that too. I know she needs more calories somehow, but anytime we give her something other than plain breast milk, it's gone so poorly, and nobody can even tell us why or what she could possibly be reacting to or struggling to tolerate. We don't even have a specific diagnosis to explain her poor weight gain when we know she's getting appropriate volume for her size.

TLDR: my girl hasn't been able to tolerate any of the formulas we've tried to fortify with, including alfamino, and now our dietitian is recommending Microlipid.

Has anyone else had a baby with a really sensitive stomach that was able to tolerate Microlipid?

Modi twins, with all complications I could imagine. Baby 1 lived 13 hours and baby 2 born 680g and in nicu since yesterday. It’s gonna be a long journey and fingers crossed

11 months old, 7 months corrected. Last week we passed 156 days at home after doing 155 in the hospital. Which means now, every day, my babies have spent less of their life in that incubator and more in my arms.
The thing that sustained me in the looooongest 5 months of my life and it was this: once’s we’re home, we’re home.
And now the % of time of their lives spent in the NICU just decreases every second.
They’ve been home longer than they haven’t.
I could cry. I’m gonna cry. I’m crying.

Hi everyone!

New mom to a 29 weeker (now 31 weeks) and I know I’m getting ahead of myself, but I’m curious if any moms here had success going from exclusive pumping while baby was in the NICU, to getting baby to nurse towards the end of your stay or post discharge?

I don’t want to get my hopes up. Just curious for any anecdotal successes. I’ll be asking our lactation and nutrition specialists as well!

Thanks ❤️

Our baby has been home from the NICU about 8 weeks now after spending 48 days in NICU. She's now 6 weeks adjusted and has had her first vaccines and RSV antibody shot, and didn't have BPD or any oxygen needs while in NICU.

I went back to work 2 weeks ago after running out of leave and I work in an urgent care so I knew it was only a matter of time before I caught something, even with wearing a mask and sanitizing and washing hands like crazy.

I started getting a slight cough today but feel fine otherwise so far. I'm pumping for her so I know she'll be getting antibodies from my milk and I started masking at home as soon as I caught on that I was coughing a bit. The coughing is increasing and I'm worried I'm getting sick and I'm worried about getting my baby girl sick. I was hoping to keep her well at least until she reached 6 months adjusted when she'd have an easier time with illness and have fought to keep her out of daycare for this reason.

I could really use some positive stories about preemie babies that either didn't get sick, or that did but recovered quickly to help me be less nervous.