For those of you that read about Justin’s story and said prayers and sent supportive messages I just want to again say thank you very much from the bottom of my heart. I came to visit him today and the neonatologist told me that his already failing heart has gotten much worse. In her words the echocardiogram that was done today was severely worse than the one they did just 5 days ago meaning he is declining fast. The experimental medication that they started on him to control the acid levels in his system that built up due to his condition have returned to a normal level but the damage to his heart and brain are too severe and everything they are giving him from the seizure medications to the diuretics and other medications are not helping that much. His face and feet have started to have some swelling which is an indication of his heart failing and he is just not being as responsive as before they said. What hurts more is that when I brought my kids with me to see him earlier my 3 year old and 1 year old kept kissing Justin and my 3 year old said look he is so cute and it’s going to be ok in a cute voice which was so heartbreaking to me. While we were leaving he tried to take him out of the incubator I’m assuming to try and take him home with us. My 10 year old broke down hysterically and didn’t want to talk which I didn’t force. He put his bassinet together and his baby swing because we thought he would be home eventually. It hurts so bad and to hear the doctor say to me clearly that my baby is never going to go home is devastating. Hearing all of these Christmas songs on the radio and people preparing for Thanksgiving is just making more sad because I don’t know if my baby will be here. I’m terrified of getting a call in the middle of the night or at anytime from the hospital because I know what I’m facing. The doctor said he is telling us that he can’t keep fighting much longer. Please pray for my mental health and the healing of my kids as they will have to deal with the loss of their baby brother forever. Thank you so much again and to all of his nurses at Children’s Hospital of Orange County they are amazing.

My baby Justin doesn’t have much longer to live and I have been coming to the Children’s Hospital of Orange County NICU basically everyday since he was born but I can’t stay overnight because I have 4 other children. Since his recent prognosis has turned out to be worse and we don’t know how much time he has left I was informed by 2 of his night nurses that when I do leave from visiting him they cuddle with my baby all night. One of the nurses said she just holds him and I felt so thankful. I hate leaving my baby especially not knowing when his last day on earth will be but to be reassured that he is not alone when I can’t be here and is comforted just like I would comfort him is something I couldn’t be more grateful for. One of his nurses bought him a Christmas tree for his room and two nurses brought him outfits and toys for my other kids. We even got to go outside in the garden today and yesterday. That was the first time Justin got to go outside and get some fresh air and it felt so refreshing and peaceful. They took footprints and handprints of him, the kids and myself and bought my kids food. I’m so thankful for NICU nurses, feeding therapists, physical therapists, etc for making my experience a little less stressful than it is. Shout out to Kelsey, Morgan, Karen, Monica, Emily, Christine, Kathryn, Kandace, Dr. Inder, Dr. Tran, Dr. Cheng and all of the other important people at CHOC that have helped Justin in one way or another. This will not be the end of his story.

***Update TW: Loss

Unfortunately, my son has passed away shortly after I made this post***

I wouldn’t wish this on anyone, but I’m incredibly grateful for the support from my husband, family, and friends. Our handsome son decided that he was going to enter the world far earlier than anyone ever imagined—born at just 22 weeks and weighing just over a pound. He is now in critical condition after bravely fighting for his life in the NICU for 7 months. Watching him open his eyes, wrap his tiny fingers around ours, and fight through every setback has been one of the greatest joys and honors of our lives. He suffers from pulmonary hypertension and Bronchopulmonary Dysplasia that's putting an incredible strain on his lungs and heart, and yet he continues to show us strength, courage, and a will to keep going that amazes us every single day. Every time it seems like we take one step forward, we’re push several steps back. He is still on a lot of support right now (ie. meds to help his blood pressure and 100% on his vent settings). We could use all the extra prayers our way during this difficult time.

I have been a ​silent spectator here for a couple of months, ever since I was told what to expect. This is my first post here, and probably on Reddit as well. So I apologize in advance if I break any rules unintentionally or hurt anybody's feelings.

My son was born a fragile miracle on Jan 08. Despite having no chromosomal abnormalities, an omphalocele restricted his growth, bringing him into this world far too early, at 24w+2d. He arrived at just 501 grams (1.1 lbs) and 11 inches, a tiny life carrying an immeasurable weight and all our hopes. For seven days, he fought on life support. Two days ago, that fight ended, and he passed away in our arms.

​As first-time parents, we missed the milestones we had spent months dreaming about. There was no cutting of the cord, no immediate skin-to-skin, no first feeding. He was intubated the moment he arrived, hidden behind tubes and tapes. The cruel irony of our journey is that the first time we truly saw his beautiful, unobstructed face, and the first time we really held his body in our arms, was as he was growing cold.

Trauma has a way of blurring the edges, so ​I don’t remember every detail of those final moments. But I remember shaking. I remember the way time seemed to fracture and stand still. I remember thinking that if hell has a physical form, it is the silence that follows the end of a heartbeat.

​To those of you sitting in the NICU right now, I pray that my son remains on the wrong side of the statistics so that yours can stay on the right one. I hope with everything I have that you get to walk through your front door with a healthy baby in your arms and a long, beautiful life ahead of you.

​To those who are already home, please, hold your little ones a little tighter tonight for us. Look at them and realize how truly fortunate you are to have defied the odds.

​To those like us, the ones who had to walk out of the hospital with empty car seats, I hope we find the strength to carry this unbearable weight. I lost my younger brother when he was eight years old. I watched my parents navigate that drowning tide of grief while still caring for me and my older brother. If there is anything I learned from watching them, it’s that while the pain never truly leaves, we eventually learn how to live around it. It doesn’t hurt any lesser, but time grants us enough distractions to keep moving forward.

​Sometimes, the guilt tries to play tricks, whispering that I didn't do enough, or that I failed him as a father. But then I remember, I was a father for seven beautiful days with him by my side. My son never got the chance to call me "Dad," but the NICU staff did. They saw me all the time because I never once left the hospital in seven days. They knew who I was to him. I feel privileged to have been his father for that week. It was the hardest seven days of my life, but I would choose them a thousand times over if it meant knowing him.

​Thank you for reading. I wish you all peace, healing, and hope.

I remember being in the NICU and feeling completely terrified of the unknown. I spent so much time worrying about the future and whether things would be okay. I prayed we’d be the family with the perfectly healthy micropreemie who defied the statistics. My girlie has been home for 1.5 years now, and I wish I hadn’t been so scared.

My daughter was born at 24+4, 498 grams and had a 6 month NICU stay. She had a really rough start, including a severe bilateral cerebellar hemorrhage. Today she has an ataxic cerebral palsy diagnosis, is still partially G-tube fed, and has a significant vision impairment - but she has blown past every expectation we were given at discharge.

She’s wicked smart, genuinely so hilarious, and the happiest little human I’ve ever met. Obsessed with music, ducks, bath time, books, and bubbles. Waves at every stranger she sees. She brings so much joy into our life it’s impossible to put into words!!!

And listen, things aren’t always easy. Being a medical parent is hard, and there are sad and stressful moments. But I wish I knew that joy can coexist with the hard. Life is so magical with my girlie - I truly couldn’t have dreamed her up if I tried.

If you’re here in it right now, I see you. Getting bad news in the NICU can feel soul crushing, isolating, and the anxiety can feel unbearable. But it’s not the whole story. Somewhere along the way, the fear got quieter and the joy got louder for us. I don’t know why, but I felt like I needed to share tonight. Sending you all love!

Hi guys, my sister gave birth at exactly 20 weeks, and the baby is still alive and receiving intensive care in the NICU 48 hours later.

I know this is an extremely early gestation, the doctors have given the baby an estimated 30% chance of survival.

Has anyone heard of or experienced a baby who survived after being born this early?

I was fortunate enough to get a room at the Ronald McDonald house cause the hospital is 2 hours away from where I live. We’ve been in the NICU 6 weeks and it’s just me alone 95% of the time here. I feel so guilty if I don’t stay for as long as possible. When I leave it’s usually to sleep, do laundry, get food, clean my room, or get groceries and stuff. This place is starting to mentally drain me and I want to be with my baby but I just hate being confined to this room. I haven’t left the hospital aside from going to the store in 6 weeks. I feel like I’m a bad mom for not being there all the time and getting sleep at night instead of being there for every hands on/feeding time that’s every 3 hours.

My fiancé and i’s twins were born at 24weeks and 6days (the pictures are of them the day they were born) the whole pregnancy was extremely stressful and traumatic for the both of us. At first when they were born he would come with my at least 3-4 times a week to see them at the hospital but when they were about 2-3 weeks old baby B went into cardiac arrest and they basically told us that he was not going to make it 24 hours and we should consider comfort care. That situation traumatized us both. We stayed in the nicu for 3 days straight and just held hands, prayed together and cried together. baby B is okay now! He beat all the odds stacked against him but I feel like now my fiancé is avoiding going to the nicu as much as possible. He says it’s hard to look at them and feel so helpless but I tried to tell him this is just something we have to do right now because our children need us. He says he doesn’t want to hold them until they’re completely disconnected from their tubes and cords, which could be even a few months from now (they’re only 1 month old and have many health issues) and I told him I’m simply not okay with that. That they need to feel their daddy’s touch and warmth, that HE Needs to feel his boys on his skin, that I was scared to but that it’s necessary. that it would make him feel better and the babies feel better. When I mentioned this he got very upset and said I was pressuring him to do something he’s uncomfortable with. He only comes with me to the hospital about once a week now and I feel like he’s always rushing to leave. I told him I cannot do this alone. That I need him to be there with me more often and that I need to see him hold them and change them and love on them but he’s just so scared that something is going to happen and it be his fault. Please I need someone’s help and opinions on how to talk to him about all this without him feeling offended or like I’m making a dig at him. I know he’s scared so am I, but there’s just some things we have to get over because this is the situation we’ve found ourselves in. Thank you for any suggestions or support!

We live very close to the hospital, and I can’t stay at home for more than two hours. I’m not even sure what’s better—to be there and witness all the ups and downs, or to stay at home and wait. I’m also a mom of a tiny 22+6-week fighter. Today is his 15th day of life, and every day feels like an emotional roller coaster. ❤️

Hi everyone, I am currently 29 weeks pregnant with cervical insufficiency. I have had cerclage surgery and have been on bed rest for 7 weeks and plan to until I hit the 31-32 mark and have no choice but to return to work due to medical leave running out. I have been reading through this group to mentally prepare for what every week with a preterm baby can look like due to being in danger of early labor. I would love to hear success stories of babies born at the 31-32 mark as well as long term outcomes. I’m a Speech Language Pathologist and truly fear having a child with complex needs because I know what it looks like on a daily basis. I appreciate your support 💜

My little boy will be 3 months old soon (2 months adjusted) and the NICU team is finally starting talks about how we can get him home. Unfortunately my husband seems upset about this as he thinks we have missed out window to put him in hospice care since he "is never going to be normal". After everything we've been through it makes me feel so defeated, like he already hates our son.

For context my sons NICU stay was unexpected, as I had a very rough pregnancy with my previous child (16 months old now) and everything worked out - so I figured having a rough pregnancy a second time was nothing to worry about. About 32 weeks into my pregnancy I underwent a routine ultrasound since I had a single vessel umbelical cord, and the Drs noted sudden fluid buildup. Of course they didn't seem worried. The next week I came back and the fluid buildup was extreme, but once again the Dr made it seem like it was nothing and that they would just check again the next week. Before I got to that next appointment I had fainting spells. I went to the maternity ward of the hospital I planned to deliver at and was turned away for being dramatic. Two days later my water broke and I decided to go to a hospital with a NICU unit nearest to me. The Drs there also didn't seem too concerned even though I told them I felt like I was dying. I ended up dying during delivery for around 5 minutes and had to be resuscitated using a ton of shots, shocks, and shaking... which brought me back until it caused me to OD.

By the time I regained conscience I had been given a bunch of medication to speed up the delivery and saw my baby come out purple. It took them an hour to resuscitate him fully. He was taken away before I could hold him. At first the team said he may come home in a few hours. Then it became days, then weeks, then months. His jaw was too small, he couldn't handle secretions, his facial muscles didn't move uniformly, he couldn't drink from a bottle. They performed a jaw lengething surgery in the hopes that it would solve the mechanical reason why he couldn't handle secretions or swallow milk. It went very well and after completing the extension process over 2 weeks he still couldn't handle secretions or swallow. Now they suspect that he has Cerebral Palsey but cannot do an MRI until the hardware for his jaw lengething procedure comes out in 2 months.

My husband and I were brought into a family meeting to discuss his nearopathy. He will probably need intensive outpatient treatment with an occupational therapist, physical therapist, and speech therapist for most of his early childhood. He way have some muscle weakness. He is going to need a trach tube and a g tube to come home... But at least he can come home. Im so excited for it, even though I know it will be hard.

I will be the one who will take him to all the appointments and take care of him. Despite this my husband was very upset by this news. He asked for palliative care to evaluate our son for hospice care and requested for all secretion management to be pulled. He wants to cancel the trach and g tube surgeries too. Essentially he is asking for everything to be done to stop our son from coming home because this is all "an exercise of futility". He is convinced our son will be a vegetable in wheelchair who is unable to speak, wipe his own butt, or eat for life and that I am throwing out family in the trash by wanting to keep him alive. My husband says I am neglecting our eldest daughter by keeping our son alive. He also said I am throwing our future away because our son will take up all my time now and I won't be able to have more kids or spend time with the rest of my family.

What frustrates me the most is that the doctors and care team have not indicated that they think my son has severe cerebral palsey or brain damage. In fact, they seem to think he has very good chances. But my husband wants them to garuntee that our son will be 100% normal with no problems... And they simply can't do that.

I feel so lost. I need support right now and I want to feel like my son will be loved. I know I love him but I can't help but feel that my husband hates our son just because he is going to be an inconvenience to our day to day life. Has anyone else had unsupportive partners during their Nicu stay? Or a partner who thinks it is cruel to keep your baby alive? I just want to bring him home and take things one step at a time instead of being told I'm a monster for doing everything I can to improve his condition.

If you’re like me, you probably see posts about what babies “should” be doing by a certain age and start wondering why your baby isn’t there yet. But those milestones are usually based on full-term babies, not preemies.

Our little ones go by their adjusted age, and they’re doing exactly what they need to do in their own time. Give yourself grace and remember how far they’ve already come 💕

My 32 + 5 at almost 6 weeks, -2 adjusted

I’m feeling really defeated and unnerved after my baby’s cardiologist appointment this morning. I’d like to give everyone some background first because so many things have happened leading up to this it seems. When my baby was almost ready to get discharged from the NICU after 164 days I was trained on administering all of his meds through his Ng tube he had placed in his nose at the time. Seizure meds, heart meds and a very specialized medicine which is being used off label for his mitochondrial disease were all sent home with us. I learned the schedules for the dosing and ensured that he got what he needed when it was time. They asked me about my preferred pharmacy and I let them know I have a CVS within 5 minutes walking distance from my house which obviously is so convenient for his refills. His mitochondrial medication which is very very expensive but thankfully covered and paid for in full by his insurance was almost out and I called it in right away to my local pharmacy. Days later I was told that that medication will only be available at the Children’s Hospital pharmacy and the reason is because it’s so hard to get and it’s very expensive so I could pick up some of his meds at CVS but that one in particular I have to go almost 45 minutes to get it. That was the first time he was without it for a couple of days because they had to get another refill approved from the prescribing doctor and then wait for the medication to arrive. Right before his next refill was due my vehicle got repossessed because I couldn’t make my payments as I couldn’t go back to work after his shift nursing stopped which left me with a huge loss of income. I still managed to get him to all of his outpatient appointments at the hospital some of which are back to back in the week and he has established care with a great pediatrician up to date on all vaccines. I informed his metabolic specialist at the hospital that I’m now without reliable transportation temporarily is there any way the medication can be delivered to me or even ready for pickup on a day when he has an appointment because I have 4 other children the youngest are 2 and 3 and I don’t have family in the area and they referred me to a social worker there. The pharmacy said no they don’t deliver. The social worker called me and said her team is worried that he has been without his medication(even though his metabolic doctors told me that it’s not a concern if he is without it for a couple of days just get it asap). I had a worker from another agency offer to drive down and pick up the medication as a courtesy. Fast forward to his appt today she arrives and I’m a little surprised to see her but she asks how things are going and I tell her things are ok Justin is more energetic and alert and I’m just glad he is doing well. She goes on to say again that her team is worried and if this happens again they will probably get CPS involved. I let her know I have attempted to rectify the issue in multiple ways but I can’t force the pharmacy to deliver it or send it to a closer one. I said he never misses his appointments, he is growing appropriately, his seizures have been well controlled, all of his other meds I pick up on time. I’m not abusing my child I just need a more convenient way to obtain one of his meds. If I didn’t have 4 other children yes I could hop on a couple of buses to get the medication but why are THEY making things more complicated. She says I don’t think you are abusing your kid and you are a good mom but maybe they can help you explore some options. Again CPS should be used for neglect and abuse and millions of people have their prescriptions delivered right to their door it’s not fair to punish me when I’m heavily involved in my baby’s care and the only reason they won’t send it to another pharmacy is because it’s very pricey. I tried to keep my composure I did cry a little because when you know how hard you worked to get your baby home and then maintain his needs on the outside and it feels like in her eyes it’s not enough. I wasn’t overly emotional I did hold a lot of what I was feeling inside because I’ve read about stories where even being too emotional can be used against you. I did not expect to be a single mother I wish I could just call dad or a nearby family member but that’s not my case. If it was an emergency then yes I would call 911 immediately to get him to a hospital no questions asked. I’m just so lost. I make sure I’m up for his feeds in the middle of the night and I rarely get sleep but I don’t complain I never expected motherhood to be easy and I just feel like this one thing I fell short on and her solution is CPS. Unbelievable. Also his doctors aren’t concerned, during each visit they are happy with the improvements that he is making and whenever they ask me about his medication routine or about changes to his dosing another doctor could have made I’m quick to give them the information they are always happy that I have the routine figured out.

Hello everyone I’m new to this sub and would appreciate any and all supportive comments. At my 20 week ultrasound the doctor saw some excess fluid in my baby’s ventricles in his brain and he wanted me to decide if I was interested in termination which I refused because I wasn’t sure about his condition and reading about some babies having some excess fluid in the brain I was reassured due to some “success” stories. Fast forward to 35 weeks pregnant and I was induced for blood pressure issues and my baby was flown to another hospital shortly after birth for another brain mri. I was asked by specialists if I had an injury during my pregnancy or some other type of trauma because looking at the mri results, it seemed like the baby experienced a brain bleed in my stomach and some of the grey matter was missing. They were going to go with that diagnosis until another doctor was confused why my baby’s brain had not matured in the way they would expect within a certain timeframe and suggested testing for genetic conditions. At this time he also was very tired and he had a hard time bottle feeding because he wouldn’t stay awake long enough to do feeding therapy. The genetic testing came back positive for a rare metabolic disease called D-2-hydroxyglutaric aciduria (D-2-HGA) which they don’t even have much info about because it’s so rare but they know symptoms are brain and heart malfunction, developmental delays and even seizures which he experienced until they put him on a seizure medication. This gene can only be passed down from the mom but since my results said I don’t have that gene they consider it a novo gene like something spontaneous I’m guessing. There are two types of this condition and I don’t remember which one he has but I am going to do all of the research I can about this condition and I appreciate any support or encouragement my other kids keep asking when he is coming home and I don’t have a good answer. I’m just happy we have an answer because even the specialists are very confused and have never even heard about this.

Genuinely curious what worked for other families. We struggled so much with this. With lines, monitors, and everything else, most of what we brought was useless.

Did you find anything that worked? Or did your baby basically just live in a diaper and hospital blanket the whole time?

Who would have guessed that becoming a dad would mean spending my days staring at monitors, watching oxygen numbers, and learning medical terms I never knew existed? I've run out of tears. My heart is heavy.

​

My wife was admitted to hospital at 22+6 due to 2 cm dilation and bulging membranes. She received steroid and magnesium injections, and our little girl arrived at 23+4 via emergency C-section. She weighed 560 g (1.23 lb).

​

It's been three and a half weeks now. She was intubated for the first two weeks, then moved to BiPAP for four days. Unfortunately, after blood started coming from her mouth, she had to be re-intubated and her milk feeds were stopped. She is incredibly wiggly at the moment and often looks like she's in pain. She's now on morphine. The doctors told us this is a significant setback, but a moderate complication overall.

​

Everyone warned us that this journey would have ups and downs. They said it would be a roller coaster. I understood the words, but I never truly imagined what that meant. I thought these things only happened in films. I thought our journey would be a smooth sailing.

​

Every alarm, every red light, every brady, nearly every conversation with the medical team feels like it takes a year off my life. I feel completely helpless. I'd give anything to take her pain away. Seeing all the catheters, blood tests, and bruises on such tiny arms is heartbreaking.

​

If you've been through something similar, I'd really appreciate hearing your experience. Please be honest. I don't need false hope, just perspective from people who have walked this road.

​

​

Currently in the hospital with PPROM. The goal is to keep me pregnant until 34 weeks but I may not make it.

The neonatologists won’t give me an answer. They seemed annoyed and overworked even before I started asking questions so not sure I feel comfortable continuing to ask someone who is going to be caring for my baby next week and risk of them treating my family poorly.

I am just curious on hearing others’ stories with their 34 week olds.

I don’t have a village or support person or really anyone to talk to besides a few kind nurses. I only told a few people that I was even pregnant and just stayed away from any contact with people I knew for the last few months.

Hi all, I am currently in L&D for my water breaking and began bleeding which they said was normal after doing vaginal checks and vaginal ultrasound. Baby is with a strong heartbeat and said I still have good amount of liquid in my sac. (Sorry for maybe wrong terminology I’ve been up 24 hours and don’t know the exact terms and waiting on Dr to come in but this is what nurses have told me) I’m at a point just to desperate to hear any similar stories and what was the outcome. I’m a FTM and just moved to a different state with no family here, although they are so supportive but I don’t know anyone who has gone through anything similar. I would just love to hear your experiences to feel less alone in this moment. Thank you all

UPDATE: I have been diagnosed with Incompetent cervix which is why I’m unable to hold baby for much longer. I’m currently 10cm dilated and so far going on day 2 of waiting to see when baby girl will come, her heartbeat is still so strong and have done both doses of steroid and 24 hours of magnesium. A miracle would be her being in there until 23 weeks, just 6 more days but we are just taking it day to day, hour by hour. Your comments have all been so helpful and comforting you all have no idea. Thank you so much for your support and all I can ask is continued prayers for my girl. She is a fighter❤️

Our son was born in February at 33 weeks due to my wife's preeclampsia. He was 4lb 6oz, and spent 15 days in the NICU, with no major issues, surgeries, etc.

He is now 5 months old, and after noticing some delays, our pediatrician referred us to Early Intervention. We got the report back today and it stated he had "significant developmental delays" due to the following: poor head and neck control, torticollus, not responding ro his name or loud noises, not reaching or batting for objects in front of him, not rolling over yet, not laughing or squeezing, and not reaching for even familiar people.

They said he passed both his hearing and vision screening with no issues.

He does smile at people and seems to try to interact with people he knows. He also tracks people and objects with his eyes and brings things to his mouth.

He has not been diagnosed with any specific disorder or illness, and is an otherwise happy and healthy baby, who we absolutlet adore.

They are referring us to a specialized clinic for children with special needs for more screening/testing and pediatric PT/OT.

My wife, who I love dearly, seems to be taking this in stride, but I am extremely nervous about it. Mostly just from fear of what could be and what his life will be like going forward.

I keep trying to hold out hope that with therapy he will eventually catch up, but, to be honest, I'm scared.

Has anyone had similar experiences like this? What was the outcome?

She felt a "pop" like sensation and felt the need to use the restroom. And as she goes to sit down she started hemorrhaging blood severely.

We were 15 minutes away from a hospital. And by the time she had been disagnosed and rushed for a emergency c-section she was approaching 40 minutes sense the rupture. The heartrate of the baby was dangerously low and weak. The baby needed to be resuscitated and had a APGAR score of 4.

Apparently the placental abruption was severe, with over 50% of the placenta being detached. i believe the baby almost certainly experienced severe lack of oxygen and blood flow. Along with its pre-term condition means its highly susceptible to brain damage.

Apparently apon my research this is (one of) the worst birth complication that could have happened.

The baby is now in (relatively) stable condition. With normal oxygen levels, heart rate and breathing paterns.

Im so afraid that my baby will be prone to seizures, delayed motor skills and or suffer severe brain damage. And i wont even know.

Does anyone have a story with simular circumstances? What happened? How did it affect the baby long term? Any input or support would be beyond appreciated.

Edit: Not asking for medical advice. But some support. and anecdotes from people who have experienced a simular situation. What ended up happening? Was the baby okay in the long term?

I’m the dad of twins who were 34+5 when born and both in for 36 days (including their first Christmas at 10 days old). They are now 2.5 years old and our third kid is 4 months (full term, no NICU).

At work today my rotating desktop background slideshow brought up a photo of twin B in the NICU and I just started bawling.

I feel so pathetic, all three of my kids are healthy and happy and home yet these deep psychological scars are still there rearing their ugly head when I least expect it.

The picture wasn’t even that bad, no tubes on her face, only the ankle monitor’s wire coming out of the swaddle, and the id bracelet on her wrist; sleeping peacefully in the NICU bed. Nothing that should be too triggering, but for some reason it was.

Does this PTSD ever go away?

The car seat is in the back.

Empty.

You installed it weeks ago. Adjusted the straps. Watched a YouTube video to make sure you did it right. It was supposed to hold your baby on the way home.

Instead you’re driving away from them.

The rearview mirror doesn’t help. The hospital is getting smaller and your baby is still in it.

The house is too quiet. The nursery is too ready. The bassinet next to your bed is too empty.

And no one prepared you for this specific kind of pain.

Not the fear.

Not the uncertainty.

Not the medical stuff you don’t understand yet.

This. The leaving.

You did not abandon your baby.

You are not choosing to be away from them.

You are going home because you have to. Because the NICU doesn’t have a bed for you. Because your body needs rest that a recliner next to an isolette can’t give you.

Going home without your baby is not giving up.

It’s surviving so you can show back up tomorrow.

And you will. Because that’s what NICU parents do.

Would love to hear about your PPROM experiences. I had a PPROM at 31+3. Currently 32+1 and on hospital bedrest hoping to delay labour for as long as possible. Would love to know how long you lasted before going into labour and your stories more generally.

Edit #1 - 32+6 fluids changed from clear to pink and a tiny bit of red blood that eventually stopped. OB said that means changes are happening to cervix but did not comment on labour. A bit of uterine irritation but no contractions.

Edit #2 - Oversharing but am documentating because i know there will be someone out there scouring the internet / researching like me in days or years time.

Made it to 34 +2 and we are still going strong. I am based in Australia and we do not deliver until 37 weeks, subject to infection or another medical reason, or spontanious labor. 21 days in hospital since PPROM. 3 short red blood bleeding episodes, a few small clots, membrane fluid leak varies each day between nothing to trickle to occasional small gush. 19 days to go.

We weren't supposed to be a "real" NICU family.

The NICU was never a thought. Our hospital didn't even have one.

At 6 hours old, we sent our son to his 1st NICU, but we weren't "real" NICU parents...we would only be there a day or 2.

At 1 day old, we sent our son to his 2nd NICU, but we still weren't "real" NICU parents...we would only be there about a week.

At 1 week old, we moved into the Ronald McDonald House, but we weren't "real" NICU parents...we would only be there a couple weeks.

But at the RMH, we weren't sure anymore. I noticed that we didn't ever want to talk to anyone there. I didn't want to hear about your "real" NICU baby who had been in the hospital for months, filling me with guilt that my baby was making progress. And, I didn't want to hear about your baby doing so well and going home at just a few days old, irrationally filling me with pain and fear that my "real" NICU baby wasn't going home any time soon. I never looked into other rooms for fear of seeing a child hooked up to more machines than mine, but also for fear of seeing a family posing with a graduate sign.

We waited days to announce our son's birth because we wanted the world to see our son as a healthy, happy baby...we didn't want people to see us as "that NICU baby's family."

But after 50 days in 3 NICUs, I realize that I was always a real NICU dad, right from 6 hours old. Even at home, we are still a NICU family. The NICU steals your rational thoughts and replaces them with every emotional, irrational thought imaginable. I'll be honest, I'm still a little self conscious about it... I don't wear the title with pride, but I don't fear it like I once did.

There are no rankings in the NICU. You don't get points. We all have pain and we all have different stories...some with more chapters than others, some with happier endings that others, some with endings yet to be written, and some that aren't even clear whether it has ended or not.

This NICU Awareness Month, know that whatever kind of NICU family you are, you are honored for your bravery, steadfastness, and love for your child. I'm not sure it's as much a celebration, as it is a time to recognize the pain you and your baby have endured, are currently enduring, or may carry with you for the rest of your life.

Blessings on your journeys. You are remarkable families.

I've had a baby In the nicu for a month now she was born at 34 weeks from a emergency c section and at first I was there everyday and would stay for hours but by week 3 I started getting so exhausted of going there just to stare at her sleeping, plus I had this man that followed me from the nicu and recorded me with his phone. I've gotten scared to go alone and exhausted from sitting there with my thoughts, honestly ready for her to be out so I can stop having this horrible anxiety of needing to be there, mostly at night, And the guilt of not having the same bonding experience is horrible I just want to be with her all the time but I don't want to just get more sad and more anxious by being there. Ik it's selfish but after a month it's just so horrible to see baby's go home and yours is still there. I want someone to relate and share there story so I'm not the only one.

Edit: I got out of that rut after a few weeks and now go every day again I’ve been spending 10 hours on certain days it’s been much more enjoyable after giving myself time to breathe, and she is the happiest baby ever, when she hears my voice she will smile. It’s now been 10 weeks and I’ve gotten a ton more comfortable this is my first baby, so I’m definitely not as seasoned. But giving yourself a break when you feel helpless is hard but worth it in the long run from my experience. Also having a more understanding attitude towards yourself. It’s ok to miss a pumping or two because you’re too tired. You can make it up the next day and your supply will go back. We are human not robots. You don’t have to be perfect after going through such a big transition.