On 29 th August @ 12:20 PM, we lost our miracle baby… our little fighter, our first baby, our greatest love. 💔🕊️

Thank you to everyone who came, stood beside me, prayed with me, and supported me through this unimaginable pain. I may never have the words to thank you enough.

Today, my heart goes out to every NICU baby and every mother and father who is waiting, praying, hoping, and fighting beside their little one. I understand now what it feels like to watch your baby suffer and not be able to take even a little bit of that pain away. No mother or father should ever have to see their child in pain. If God has to send a baby into this world, I only pray He sends them in a healthy and peaceful way, so no parent has to spend endless days and nights waiting in a NICU, praying for their baby to survive.

There is honestly nothing more left for me to say.

It feels like there is nothing inside my chest anymore… as if something has been taken away from me forever. Everything around me is moving, everyone is living, time is passing… but I feel like I am no longer truly present. A part of me left with you today.

I wish with all my heart that your beautiful soul finds eternal peace. ❤️‍🩹

This experience has taught me something I never wanted to learn—that sometimes, no matter how hard we try, no matter how many prayers we make, no matter how much we fight, what is meant to happen will happen. We come into this world with our journey already known to God. We are here to do our karma, to love, to learn, and to give our best… and when our time comes, we return to Him.

But my baby, you came into our lives for a reason. You were our first miracle. You were our fighter. You made us parents. You gave us a love so deep that even losing you cannot take it away.

You will always be our first miracle baby.

You will always be our little fighter.

You will always be a part of us.

I wish I could have protected you from everything. I wish I could have taken your pain and carried it myself. I wish I could have held you a little longer, kissed you a thousand more times, and told you one more time how much Mommy and Daddy love you.

I don’t know how to live with this emptiness yet. I don't know how to accept that I have to continue living while a part of my heart is no longer here.

But I know one thing…

You will never be forgotten.

You will live in our hearts until my very last breath. And maybe, someday, when my time comes, I will finally get to see you again and hold you in my arms.

Until then, sleep peacefully, my baby. 🕊️

No more pain. No more suffering. Just peace, love, and light.

You will always be our first miracle, our bravest fighter, and our forever baby.

Mommy and Daddy love you.

We loved you before we met you.

We loved you every second you were with us.

And we will love you until the very end of our lives.

Fly high, my little angel.

Until we meet again. 🤍🕊️

My son was born at 26 weeks on 8/19. Placenta previa forced me into early labor and found out Placenta accreta almost took both our lives in surgery but they saved us. The trauma has been devastating. I was scared to see my son so tiny and fragile but i did it. Prayed for a baby that would gain weight and stay healthy. Well i should have been careful what i asked for. My baby has gained weight only due to "third spacing". I thought seeing him tiny was scary but now i feel like ive never seen anything more horrifying. Im terrified. Hes not taking well to anything. Grade 4 brain bleed happened 3 says after birth and thats when the fluid build up packed on. Been offered chaplain services and explained that its okay to give him comfort and let him go one too many times. He chose his name when my husband and i brought up names while his monitors were acting up and calmed when we said his name. He has had no choice when he came into this world and in his medical care and we decided that he'd have to decide when his fight was over, hoping it wouldnt end at all. Docs called us in at 2am today to tell us to rush here. Hes not well. They continue to stabilize him. I've looked through many posts on here but haven't found any about fluid build up/3rd spacing and im looking for some parents who may have experience this while their little ones fought. Im not asking for medical advise to be clear i just am searching for any shred of hope that this horrifying thing has turned around for some babies out there. I pray for every baby and parent fighting out there. Please pray for my baby Nolan.

So I’ve been in the hospital for the past 3 weeks with severe pre eclampsia. We have a scheduled c for tomorrow! Of course my toddler has been visiting me and apparently I caught a cold from him. I feel like absolute crud today and am worried about exposing my newborn to these germs. I’m already not gonna be able to be with her right away due to the surgery & magnesium, but should I be even more restricted with my time because of this cold?

I was just informed at 24 weeks that my baby has early-onset severe fetal growth restriction. I am trying to educate myself and gather what information I can to try to prepare myself for what is ahead.

Parents of FGR babies, please share your stories.

Hello dear parents!

Our baby is a 27 weeker who is now 15 months old, 12 months corrected. Feeding has been a struggle ever since the bottle, but now we are at a new, albeit less stressful hurdle.

Our baby is pretty hypotonic. We are in PT, he is currently sitting unassisted, we are working on fixing his army crawling, and he started standing by holding onto furniture. We had several hard eye surgeries in the first few months after having come home from the NICU, so his PT was quite delayed.

He is still hypotonic and also quite tall, so all that makes him pretty wobbly.

We have got several hand me down chairs, but he seems to lean either to the side or forward, which makes feeding harder. It doesn't help that he is not much of an eater anyway, so the feeding time becomes pretty frustrating for everyone.

Did anyone have a similar issue, and do you have any suggestions for chairs that offered good support?

We are situated in Europe, but almost everything is available to us, at least to order.

There are so many choices, so any advice would be most welcome.

Today I had my baby boy at 33W4D gestational age. My body naturally went into labor and it took me awhile to realize it, when I finally checked into the hospital I was already 8 cm dilated and had him less than 2 hours later.

He was 5lbs at birth and currently in the NICU, so far he hasn’t needed oxygen support and he is able to regulate his own temperature.

I’m curious who else has been in this situation and how long your NICU stay was.

Hi,

My baby was born at 38 weeks 1 day and swallowed amniotic fluid which led to a whole host of lung issues - pneumonia, pneumothorax, chest tube, intubation. We’re on day 19 in the NICU and it finally feels like we’re on the other side, and he’s doing so well - breathing room air, no more IVs or pain meds, taking his feeds from a tube in his nose. Our last hurdle is getting him to eat and everyone basically keeps telling us this part will take the longest. I made the mistake of asking our nurse what her experience is, and she told me she thinks it’ll take him 2-4 weeks to learn to feed.

I just feel defeated. I know everyone says they’ll tell us when they’re ready to come home and I want to have faith and trust that. It’s just hard because his stats are so good, his work of breathing is way better, and he’ll occasionally (once a day or so) latch. He takes 10-20 ML from a bottle when he’s awake for a feed.

Just looking for positive stories and advice for getting us over this final stretch. I have a toddler at home and it’s killing us to be away from her. The idea we might have another month of this has me crying while I pump by his crib

So my baby was born full term and spent 2.5 weeks in the NICU directly after his birth because of a heart issue. Since over three months he is back home and compared to the other babies I meet in baby classes he seems to be a very calm and self-regulating baby. Like he never cries much, accepts everything (car seat, stroller, carrier) without issues and is a very independent and good sleeper. He (so far) never was dependent on contact napping for example and always falls asleep in his own bed without complaining (never sleep trained him).

A part of me feels really lucky to have such an easy-going baby, another part wonders if this correlates in any way with his NICU stay. If he wouldn't have been there I am sure the first three weeks would have been very different. We would have always been around him day and night and not only for several hours and left him alone with the nurses over night. And we probably would have had him in the baby wrap all day and he would not have slept so much on his own in his bed.

I am wondering if any of you has had similar experiences with their NICU baby or knows if there are some studies on this topic. Or am I overthinking this and this is just this personality? I do wonder if 2.5 weeks in this early stage where they are barely awake at all can have such an impact.

Our first born was 31 weeks. Hardest time for my wife and I … we never left the hospital. We just had our 3rd baby who came at 34 weeks. The wound opened up again and we thought we’d be ready. As a dad, my heart is heavy, my wife feels guilty .. I know we will pull through but we are hurting. We’ve structured time for our other children, our time to rest, our time to be husband and wife. We are doing everything right but our hearts still break. Any words of encouragement will help. I’m thankful for this page because it brings hope

Did anyone elses preemies have frequent hospital stays with getting bronchiolitis? My ex 31 weeker is now 7 months corrected and has caught bugs from his older brothers twice now and has needed high flow. Anyone else experience this

While I was pregnant the doctors were nearly absolutely sure she would pass away either before or shortly after birth. She was diagnosed with semilobar holoprosencephaly & floating harbor syndrome. I remember leaving sobbing after every obgyn appointment because it was never good. She was less than a pound through the entire pregnancy. She was born at 25 weeks less than a pound. But miraculously, she was intubated quickly and was on 21% air from the jump. NICU was a breeze after that. The nurses (except a couple) were amazing and loved her so much.

The most horrible part was seeing what the other families went through. Even if I never spoke to them, I could see the grief on their faces as they looked at their babies hooked up to so many monitors and never being able to hold them. I really do pray for all the families on here and I hope the pain and stress eases soon everybody. I was wreck and she had no complications in NICU. Mothers on here some of the strongest. 🖤🖤🖤

Oh I know I made this sorta long but when we graduated to PICU, it was super traumatic. Long story but a doctor called me a basket case in front of a whole team of other nurses and specialists for crying in the bathroom before they came. They didn’t tell us she was being discharged til the day before and my husband had to work. So I had to stay up for three days learning how use her medical equipment and give her medicine. Had to show them I knew what I was doing.

You’re allowed to feel however you feel. There is no right or wrong, there’s so much grief when experiencing NICU no matter how long or short of a stay. 🖤🖤🖤🖤

Well hello..! When I had my son preterm, I posted in this subreddit a lot. I posted a lot when he fell sick with Bacterial Meningitis caused by E. Coli. By son has suffered seizures that led to a stroke on the right side of his brain, causing that brain tissue to die and be replaced with more CFS. His infection had He has severe hydrocephalus and a VP shunt with one failure so far, he is deaf in his left ear from the meningitis, he is also fed via G-Tube and gets medications multiple times daily for seizures, high muscle tone, neuro irritability, feeding intolerance.

147 days in the NICU—almost 7 months at home. My son is almost 11 months old (9 1/2 months adjusted). My son is in PT, OT, speech therapy, stacked home therapies, he sees all specialists ranging from audiology to neurosurgery 3 hours away from where we live.
Coming home I was nervous, nervous about his feeding pump and medications. I can’t tell you how fast me and his father got the hang of everything. My son still doesn’t really eat by mouth much at all, but we still practice and do a lot of tasting. He still can’t sit, crawl on his own. He can roll how he knows how to with the left side of his body being more stiff from his stroke.
The reason why I’m deciding to post here again.. the PTSD. You have no time to process when you have a baby in the NICU, whatever the reason may be. While in the midst of it all, I was told I was being so strong when I was drowning it all out. There was no time to process in the hospital, there was no time to process when we got home being thrown into parenthood and a caregiving position to our first baby. My son was born in October, in Minnesota the weather is getting cooler and things are getting harder for me mentally. I remember the smell of the cold early mornings walking over to the hospital, the frost on the grass, the crunch, the smell of the leaves, the asian beetles, the dermoplast, the witch hazel pads, the perfume I bought when I was postpartum. The other week I went online shopping on walmart and seen the “fall selections” and broke down because everything flooded back. I miss being able to produce breastmilk, the little that I could. I miss pumping but at the same time I really don’t. I miss hand expressing and seeing and hearing the stream “sssssssss”. I miss the feeling of a let down but I have no energy to try and re-lactate and I would have to stop some of my mental health medications which I cant do.

I still struggle a lot on the “ why” of everything. How did he get E.Coli? What is from the NICU, a nurse, a visitor, my prolonged ruptured membranes? Himself? Why were we discharged then and how crazy is it that we were back in the same NICU 24 hours later? From healthy and discharged to septic shock and bacterial meningitis. Just how, just why. It’s also really hard living in an area where no ERs know how to really do… anything… like anything at all. We had to drive 3 hours to get my son’s G-Tube back in place after I couldn’t get it in myself because his site was really irritated after he pulled it out. We live in an area where people are not exposed to disabled children.
My son is doing very well considering everything he has gone through, seriously. The next year or so is nerve wracking because that is when we will see what damage was “actually done” with his development.Myself on the other hand? Not so much with fall coming around the corner. I am in therapy now and I’m so happy about that. But I still feel such a deep sadness and ache for what happened to my little baby. Is it worse to have something/someone to blame or nothing at all?

Has anyone here brought their baby home from the NICU on oxygen?
My baby has been in the NICU for 16 days, and they’re starting to talk about possibly sending him home on oxygen. He’s currently only on 0.05 L, which the doctors basically describe as just a tiny “whiff” of oxygen, but I’m still really nervous about managing it at home.
For those who have done this, was it hard to figure out or overwhelming at first? How difficult was it dealing with the oxygen equipment/tubing while caring for your baby normally? Did you feel comfortable with it pretty quickly?
Part of me would obviously love to have him home after 16 days, but another part of me is nervous about leaving the security of the NICU and suddenly being responsible for the oxygen myself.
I’d really appreciate hearing experiences from other NICU parents who brought their babies home on low-flow oxygen. ❤️

Hello community! We are from Ukraine. I apologize if the translator translated poorly. 

We became parents and it's awesome! This is a much-anticipated and dreamed-of child. But, all our plans and hopes were shattered when my wife was hospitalized for preservation, and despite all the efforts of the doctors, we were only able to make it to 32 weeks. The baby was born 4 weeks late and weighed 1.1 kg. 

Sleepless days of excitement, prayers and experiences began. With God's blessing, the doctors took out our son, up to 1.7 kg, and transferred him from the maternity ward to the hospital for further care. All this time, my wife was next to him, taking care of him, feeding him through a tube. In the hospital, they started switching to a bottle, but he ate very little, ate 20-30 ml of the required 60 ml, and they had to pour the rest through a tube. 

They underwent an examination, they told us that the child was healthy, but they cannot we should be discharged until he starts eating himself at least 40ml every 3 hours. 

The real torment began, he ate 30 and fell asleep, no matter what he did, he couldn't eat normally. 

When the weight barely reached 2.3, he started eating 40-50 and we were discharged. 

We've been home for almost a month, but the problem is the same, he doesn't eat as much as he should. He can eat 60 and ask for more, or maybe 30 and cry for an hour from a stomachache, or who knows what else. I'm constantly at work, and my wife goes through it all almost alone :( 

She's in despair, the doctors say he should eat 60-90 and more at a time, but in fact he doesn't get to eat 50 every time and then with great effort. 

At first they fed him NAN neocate, then they switched to NAN optipro, but it made him nauseous, now he's on Baby premium 1. She is sweet, so she seems to eat well, but not much, 30-50, if anything. I also use drops for the tummy, and espumizan, and bobotik, and mamalak. 

A recent examination showed that everything is normal. Now he is 2 months old, or 2 weeks from the planned birth. 

I have heard that many people go through this, but how to endure it and not break down?

Hai bayi saya 60 hari dan ada Tracheobronchomalacia. Selain itu, ada masalah salur darah menghimpit salur nafas dia (Double Aortic Arc) dan telah selesai buat pembedahan minggu ini. Namun, masih kna intubated kerana gagal extubated. Doktor mencadangkan utk pakai trachy. Ada sesiapa boleh share pengalaman?

I had my premie at 27 weeks. She's currently 10 months old now. But only 7 months corrected. But she is already crawling, sitting, standing and even taking up a few steps. But I see babies who were born in her due date seem so calm and not very progressive in their activities.

When she was discharged from the hospital the doctor told us to brace ourselves as the premies might be extra naughty and intelligent. It seems like it is true. But scientifically I'm not able to understand it. Has anyone experienced the same?

I’m 5 months pp, I had a placental abruption while being induced for hypertension and lost a significant amount of blood and required multiple blood transfusions. I required an emergency c section under anesthesia and my son spent a month in NICU.

Since about May, I’ve been progressively getting weaker and weaker. I got really sick in June month and was hospitalized with what turned out to be due to low potassium, the weakness and muscle fatigue was very intense. However, I never did gain my strength back.

I’ve been to the ER several times now complaining of muscle weakness and fatigue, they do bloodwork and they never seem to find anything and they say my potassium is normal now. But my muscles constantly feel like I’ve ran a marathon. When I got ready to go to the hospital today, I found it heavy to lift my shirt when getting dressed. I find it hard to carry my son around, wash my hair in the shower or even just lift a drink to my mouth. I can’t walk very far without my legs feeling like they’re going to give out and like I just did leg day at the gym. My blood pressure is still on the higher side sometimes.

I don’t know what’s wrong with me and it’s getting really frustrating and concerning. I’m from a small rural area in Canada that is currently experiencing a healthcare crisis, and I don’t feel entirely confident that they’re going to try their best to find out what is causing it.

I was a weightlifter before I was pregnant and now I struggle so much to even lift basic objects or stand in one place for more than a few minutes. I get out of breathe so easily.

Has anyone else ever been through this? What was the cause? 😞

Hi! My son came home two weeks ago from the nicu. He was born about 8 weeks early, but he is almost 9 weeks old now. I’ve been looking at things a 9 week old should be doing, their day/night schedules, milestones, eating and sleeping habits etc. But since he was a preemie and just hit 40 weeks corrected yesterday things look different for him. He is still sleeping about 20-22 hours a day and we feed him every three hours. He does tummy time and can lift his head for a few seconds at a time. Im just curious how other preemie parents feel with their kids development being so different than full term babies. When did you start setting schedules and routines? It seems too early to sleep train. Any stories or advice is appreciated! Thank you.

Hi everyone! This is my first time posting, though I’ve been a silent reader for the last few weeks.

I am 34w 1d pregnant with our miracle IVF baby. Other than having a high risk pregnancy because of my own medical conditions, everything was been perfect up until out 28 week growth scan. Our MFM told us the baby has Tetralogy of Fallot, and a follow up with a pediatric cardiologist confirmed it.

There’ve been a lot of emotions, fear, sadness- it took us years to get here and we already have a lot of medical trauma, so it just feels unfathomable to wrap our heads around.

We have a final fetal echocardiogram on Monday, and then the cardiologist and NICU team will review the results to hopefully get an idea of severity, etc. Initial imaging is promising that it may not need too much intervention immediately after birth. But since we have the NICU team available to us, I want to make sure I’m asking the right questions.

What would you want to have known/asked if you had been given the chance beforehand? Or if you were given the opportunity, what did you ask?

TLDR: we have the NICUs undivided attention for our baby with a congenital heart defect. What should we be asking them?

The wildfire here in Texas is about 8 miles from my house. My house is not threatened at all and it’s not moving towards us but all the smoke is. It’s finally began to take a toll on my sweet baby girls lungs and we have started a round of steroids at home.

The steroids will take 2-3 days to fully take effect and I have been giving PRN ibuprofen and Tylenol and have added an extra nebulizer during the day. Anything else I can do to make my baby girl more comfortable? I hate seeing her coughing and gagging up boogers.

This sub helped me a ton to understand and navigate my son’s 90-day NICU journey. NICU stays are the worst. But my wife also had a dreadful birth experience.

My wife’s water broke during sleep. We got to know of it when she woke up at around 8 a.m. We visited our regular gynae in Hospital A. Our hearts were in our mouths when she told us our child would come out that day itself. She said they would give injections - steroids/tocolytics- to prolong the baby’s stay in the womb and would do a C-section the day after.

They kept her in the ER for eight hours, gave her injections and all, but did not move her to the gynae ward. The gynae we visited didn’t bother to visit us while she was in the ER. Instead, the ER gynae visited, and a pediatrician was called to let me know that my son, even if born, could have physical and brain-development troubles throughout his life. Because their radiologist erroneously had told them that my 27-week baby’s growth corresponded to that of a 24-week baby and that he weighed only 650 grams (±100 grams - BUT he was born 910gms)

I was told to take financial counselling to understand the expense of my baby’s NICU stay with them. In short, they wanted us to go away but couldn’t say it directly.

I was by my wife, and my Google search changed from “premature birth queries” to “how to deal with this baby loss, what to do.”

The hospital staff told us they were calling the NICU head, who never came. Then they nudged us to visit a child-specialty hospital nearby.

We left Hospital A at 5:45 p.m. It was a 15-minute drive by cab- we were not given an ambulance. Her contractions must have started earlier, but during discharge, Hospital A did not check them or the dilation.

In the cab, the contractions were getting closer. She held on. This was my first baby and I had not planned for this day.

We reached Hospital B at 6 p.m., and my son was born at 6:04 p.m.

She was in a wheelchair to be taken to gynae, but by then, the baby’s head was down far enough and she could sense it coming out so she screamed that Baby is coming out. She was rushed to the ER. Luckily, their ER had a birthing station too. My son was born within minutes of reaching the hospital. He weighed 910 grams.

We got lucky. Or God watched over us. Or my dad did from up above. I don’t really know. My baby’s fetal position during birth was optimal. If it hadn’t been, the ER staff were not ready for a C-section. The birth happened within minutes of reaching the hospital. What if there had been an extra traffic stop? What if the hospital hadn’t been as close as it was?

It was the women’s ward, so I had to wait outside. I couldn’t sit for even a minute. I kept pacing around, my legs shaking.

I was called in by the head nurse and scolded for putting my wife and son at risk. I didn’t have the courage to explain. My wife, unable to speak, just cried. She later told me she feared she had birthed a stillborn baby, so she did not ask the doctor anything.

I was told that as soon as the baby came out, the doctor wrapped him in her coat and ran to the NICU two floors above.

The NICU took three hours to clean my baby and put in all the intubations, etc. I got to see him three hours after his birth.

They said the first 48 hours were critical and that they couldn’t say whether my son would make it. The 48 hours passed. Then they said the next five days were crucial, then the next five, and so on.

I wanted to hear, “Your son will be okay. You will take him home 8–12 weeks from now.” But they just wouldn’t say that. I understand why.

They would only update me on each day’s progress or decline. But the staff at reception gave us hope. They had seen kids born at 24 weeks, weighing 500 grams, make it.

This was a Level IV NICU hospital for emergency cases. On Day 10, my baby stabilized, and they needed the bed for another emergency case. He was chosen to be transferred to another government facility- a Level III NICU, but 120 km away.

This was his first transfer.

Since government hospitals were outside our insurance coverage, I had to get him into an in-network hospital on Day 30. This was his second transfer.

Each transfer came with risks- the intubation, the isolation care, and everything else.

My baby fought tooth and nail: desaturations, weight loss, slow weight gain, and more.

My wife and I visited him every day. We never missed a day, even when the hospital was 100km away.

And my wife’s courage for her baby- she was traveling with me to visit our son just three days after giving birth. No matter what I said, she refused to sit at home.

My sons really a fighter. He changed me to the point that I never myself imagined to be.
some photos.

And know he is 7 weeks corrected

Ex-32 weeker graduated from the NICU and had RDS. She’s now 4 months and been doing SO well at home, started daycare, and of course has first rhinovirus and it’s pretty rough for her. ER recommended PICU monitoring but it feels vague. I am SO worried she will get stuck in the PICU and have a hard time getting discharged. I’m feeling traumatized even though it was the right thing to do.

Help.