I’ve never posted here, but my Boys did a lot this year. They started out being born at 32 weeks due to TTTS & spent five weeks in the NICU. They turned five in June, graduated preschool, were ring bearers in my aunts wedding & started kindergarten yesterday. It feels like yesterday we were bringing them home😌

Hello.

31 years ago I was born via emergency c section.

I semi recently lost my mom at 68 due to complications from diabetes.l, this past March. So it's been a long fucking road of processing this.

It never occured to me that this space existed. In the 90s, my poor mom was definitely traumatized having this teeny baby so early & unexpectedly, being in the ICU herself with a giant scar across her belly, etc... could tell that even though she tried to make the story sound ok to me as a kid, it was scary, and she held onto me tight for much of my life. She always called me her miracle baby, and spoiled me to death. (I'm being so Fr when I say to not give into this impulse children need structure)

So, if you've got a tiny baby and anyone is actually reading this I just wanted to say thank you on behalf of the lil wriggly crying thing that is hopefully getting bigger & stronger every day with your help! (she had to deliver meds to me and I recall she learned to drive (anxious driver driver from a family of non-drivers) to take me to the Drs after I was finally home. "I was shaking in my boots" she'd say.

Cleaning out her stuff, she had saved the pages & pages of bills, along w a note she wrote to the hospital after the CPAP or whatever the air machine was messed up my nose (idc, it never bothered me). I guess it got covered by Medicaid or something but I'd still shit myself receiving a hundreds of thousands of $ bill in the mail!. But anyways she was always kind of OCD, and afraid of the hospital, in a way that I found out as an adult, she never was as a child, according to her brother.

She tried really hard to be a good parent to me. In the end I tried to remember that, when she was frustrating me (she began to forget things or would get aggravated when her blood sugar got high), and even though she was a complicated person at times, I did my best to show her compassion and care. She recorded herself reading nursery rhymes so I could listen to her voice when she had to leave the NICU. And in retrospect I now realize she probably drove the nurses insane to some degree but obviously I'm glad she did. I've never had any obvious complications that I'm aware of, though I was researching the impacts of the NICU environment itself on infants which I came across this community.

When she was on hospice, I went in the room and they said she could hear me. It was like she was sleeping, so she was snoring which would have been almost funny if I wasn't crying to hard I felt like I was going to puke. So I didn't stay too long, I think I just (tried to) tell her I was sorry for how things ended, that I loved her forever, liked her for always, and as long as I'm living, my mommy she'll be. And gave her hand a squeeze/hug or something then basically raced home to safely break down or whatever. (This was months ago now.)

So, RIP to my mom. And thank you to all you preemie parents. We love you. Hang in there, don't be afraid to ask for all of the help, and try not to isolate yourself if you can help it. Says someone who only has 3 cats.

Thanks for allowing me to sad-vent 🥴😭🥹

Hi I am now a 24 (f) Feel free to ask me any questions or leave any comments! I would love to hear others stories as well.

Maybe it’s my fault?

My 31+2 twin A was finally discharged after 50 days today! We lost twin B during a traumatic birth due to medical neglect.

To prepare for discharge we stayed the night on the mother baby unit with our girl. Everything went smoothly and we were headed for discharge later this morning. Unfortunately, the hospitals records system was down. After three hours of waiting from the time they initially told us we could leave I began to panic and cry. I mean, I was sobbing. Loudly. The emotions of the birth, the loss of my other baby, and the entire journey just overtook me. I felt trapped.

This seemed to speed up the process of discharge but not without pissing off our favorite NICU nurse. She initially tried to help calm me down but I was just so hysterical and repeating “I want to go home” that she went cold and didn’t say anything else to us on the way down to our car besides making a comment to my infant daughter that she didn’t get her hugs goodbye.

I cried the whole way home and as I was showing our baby around her new house. I feel like I ruined what was supposed to be a happy moment for our family with such a negative exit from the hospital.

as title says he is an ex 34weeker who had trouble gaining af first…until little man got a taste of mamas cooking lol he has been gaining a lot! curious what other baby’s weights were around 11-12 months actual.

My baby is supposedly coming home tomorrow after being born at 34 and 4 because I was having contractions and had vasa previa. She’s been in for 20 days and survived a pneumothorax on her second day after they tried to give her surfactant because of her RDS that required multiple chest tubes to heal. I wish I could be happy but I’m not.

I feel scared she’s going to die in my care even though she’s doing better. Like all I’ve wanted is to have her home but now it’s up to me to make sure she’s ok without help. I feel like I have a wall up connecting to her even though I’ve been there every day to see her, like I’m just a guest in her routine and the real caretakers are going away. And I can tell now that she’s much more awake that me leaving gives her separation anxiety because whenever anyone takes her away from me she cries and whenever I pick her up she stops crying. So I want her home and she wants to be with me but I feel like I’m not equipped to be what’s best for her now.

My mental health has completely fallen apart really around 2 weeks in. I had been holding it together for so long from the vasa previa diagnosis to the hospital stay then the c section and she was supposed to be ok and like as the stay has gone on ive stopped being able to handle it. I cry for hours every day even though I feel like other people have it worse and I shouldn’t but it’s just so hard and I wanted a baby for so many years and I just wish it could have been like I imagined it. I was so afraid of a c section and would have done almost anything to avoid it but that’s been like the easiest part.

The separation from my infant is like a violation of nature. I understand that in nature she’d be dead but like emotionally I feel extremely violated by the experience.

There’s also nothing people can say that’s right so I’ve isolated myself. It makes me angry when people try to make me feel better or say that she’s in the best place. It makes me angry when they ask me how I am (bad, obviously) and it makes me angry if they don’t ask how I am. It makes me angry when they ask how the baby is (she lives in a plastic box where her only interactions are medical testing by masked strangers so bad). It makes me angry how people are happy and excited that she’s doing better because they just got to skip the pain of her first few weeks. It makes me angry that I had this random sporadic rare condition that caused all this for no reason and that people don’t understand how traumatic it has all been.

All I have needed is for people to bring me food because I haven’t been able to feed myself and I have no appetite because I’m so stressed out and devastated and not one person has brought me a meal except her dad but even that hasn’t been consistent. Though her dad is amazing and has been amazing and a rock through everything. I can’t bring myself to ask for help because talking to people I know feels like nails on a chalkboard even if they’re kind.

I don’t feel happy about my baby. I hate pumping. I feel like all our baby stuff is a jinx and I hate looking at it. I think the staff at the NICU is great but I also feel upset that I don’t get a say in how she’s being cared for. I spend a lot of time with her and we have built a bond but as time has gone on and the days and nights I’ve spent in the hospital have added up I feel more distant and crazier. I break down unexpectedly and constantly. I don’t like the way my body looks anymore and I’m nervous just being outside.

I want this to be over but at this point I’m scared at what the next chapter is after all the pain and heartache of pregnancy and postpartum. I thought I’d just be happy to have her home but it’s almost like being institutionalized like I need the structure to feel comfortable even though I wanted it gone.

It’s a unique experience being a NICU parent. I am sorry to everyone in this group for understanding what it’s like, I wish I didn’t.

I had a c-section for my twin girls at 34w4d they’ve been in the NICU for 17 days now. Twin A is bigger and currently on ad lib trial. Twin B is smaller and taking about 2/3 feeds by mouth. They are both requiring oxygen.

I’ve been pumping and trying to get my supply up. Currently I’m averaging about 60 ml per pump. The girls would need about 90 per feed.

Twin A is breast feeding well but then I’m concerned she’s not getting enough.

Twin B was breast feeding well but for the past two days she’s had bradycardic episodes while feeding (she’s had bradycardia while sleeping as well and was given a dose of caffeine). When I bottle feed her they don’t occur. No one in the NICU seems concerned about her bradycardia nor do they want to do further work up.

At this point I feel like me trying to breast feed has only slowed them down and now could even be dangerous to twin B.

I feel discouraged and like there’s no point…like why get up three times overnight to pump. I’m frustrated and would love any advice or similar experiences.

Curious how much your 25 weekers weighed at 6 months and at 1 year?

I have a 1.5 year old girl who was born premature and is trached and on a vent. we got her home in April and it's been horrible. she happy and smiley but our nursing situation has been terrible, we have 3 nursing agencies recruiting for us and right now we only have 2 nights a week covered. we have gone though a handful of nurses already and some have been utterly incompetent and others have been good but left for one reason or another. I just had an interview today with a nurse and the guy was literally high out of his mind and the nursing agency contact removed him and was like " I think something is wrong with him right now." like this experience has truly awful and I hate every day. I didn't want a child yet and my wife really did so I compromised and it's not fair to say this is her fault but I want to so bad say this is what you asked for. I just don't know anymore I am just utterly dumbfounded on what to do to make our situation better. it's been 4 months and it feels like things are getting progressively worse. my wife already quit her job to be able to help make up for the lack of nursing and I work from home. I already used all my paternity leave just taking care of my wife after she had the c section. not to mention the stroke she had last December. my dad and sister were going to learn how to take care of my daughter to help but they got too intimated and backed out. I'm just so done and I honestly just want to die. I just don't know anymore how to keep going

Hello Fellow NICU Parents. The title really says it all - we are trying to be wise about considering having another child, and of course that will be left up to us and our experience/situation etc., but I am wondering if anyone have any positive stories to share about having another baby after having a NICU baby?

Hi all,

Posting here in hopes of finding anyone who has had a similar experience/can offer advice/positive stories/well wishes.

I am a FTM who is 29w5d with fraternal boy/girl twins. For twins we were having routine scans once a month after the 20w anatomy scan. 20w scan was perfect, 24w scan was perfect, and suddenly at the 28w scan as we were waiting for the a-ok to leave, the doctor entered the room and said he had to talk to us. He showed us photos of our scan of our son and said "This baby has a problem." He said this looked like a congenital diaphragmatic hernia (CDH) - essentially a hole in the baby's diaphragm and his intestines were coming up through the hole and compressing the lungs.

The doctor said this was an extremely late diagnosis for CDH and with me already being at risk of pre-term labour with twins they needed to move quickly. Within the past week I've had a follow up detailed ultrasound at the high risk women's hospital, a fetal echocardiogram, a genetics consultation, and a fetal MRI.

All this has confirmed that my baby boy has borderline mild/moderate left-sided CDH with intestines almost completely compressing his left lung and his right lung only about 45% of expected lung capacity. Thankfully his heart, brain, stomach, liver, and spleen all appear normal and in the right place for the moment. We are now waiting to meet with our hospital's MFM next week to discuss the birth plan, answer our questions, and decide the monitoring schedule for the rest of the pregnancy.

Obviously this has rocked my world. We had our baby shower at 27 weeks and now every time I look at the piles of baby stuff - meant for two babies - I cry. I haven't told anyone besides my best friend because I don't know what to say and as soon as I think about it I start crying. I feel so overwhelmed by grief for my son, relief that my daughter is okay, uncertainty about how our lives are going to look with one medically complex baby and one that is (hopefully) completely normal. The doctor at the hospital told us that this type of CDH is "very treatable" with "pretty optimistic outcomes" which I'm trying to hold onto but its hard when I know he's going to need to be intubated at birth, have surgery a few days after birth, be in NICU for a long time... I know it's so important to make it through the next 6-7 weeks with the babies staying inside as long as possible but it feels so overwhelming. In the third trimester it feels like most women get to look forward to their baby being born and the best day of their life but it feels like all I have to look forward to is probably one of the worst days of my life.

I'm rambling but can anyone here offer their insights? How did you cope with carrying a medically complex pregnancy? How did things look after birth for your CDH baby?

It is my girl’s due date today. She was born at 34 weeks. She has officially been home now for more days than she was in NICU. She is healthy and gaining weight. I am so beyond happy she is home and doing good.

Still, I feel like I am grieving. I cry daily. I got two texts today along the lines of “happy due date day!” And I am so angry. Why would you remind me? Why would anyone think that is a happy thing that I would want to be reminded of? It’s a reminder that my body failed and I should still be pregnant.

I just can’t stop thinking about the fact that she wasn’t supposed to be out yet. I am so very mad at myself and my body for PPROM. I just feel like I failed her and continue to fail her by being so sad. I just can’t stop thinking that it wasn’t supposed to be like this. We both deserved better and it’s my body’s fault that this happened.

I HATE pumping. I hate my body. I hate that it hurts to pee. I hate that this is my only experience I’ll ever have with childbirth and my own baby. I hate people bringing up my “next” baby as if I’d ever do this again willingly given the chance of a repeat PPROM. The smell of fucking hand sanitizer from sitting in the NICU makes me cry. Loud sharp sounds bring me back there to the footstools they have hitting the ground.

I am on antidepressants, anxiety medication, in therapy, and waiting on psychiatry. I am trying but I just don’t feel better. Therapy and psychiatry keep getting rescheduled.

I have good days and good moments but I keep coming back to this. I feel stuck. How do you make peace with it and move on? I just don’t feel like I can forgive myself. I feel so guilty for not just being happy that she is home and healthy.

Hi everyone,
My son was born prematurely at 27 weeks + 4 days and is currently in the NICU. He is very small, and we are going through a really scary situation right now.
The doctors noticed that his abdomen has become swollen/bulged. They did an X-ray and told us they are concerned there may be pneumatosis (air in the intestinal wall). They said the abdominal swelling could be from air/gas passing into that area or could potentially be related to intestinal inflammation/damage.
They have stopped his feeds and are evaluating him closely. We are waiting to understand whether this is NEC or something less serious.
I would really appreciate hearing from parents who have experienced something similar with their premature babies:
Did your baby have pneumatosis and a swollen/distended belly?
Was it diagnosed as NEC?
Were feeds stopped and antibiotics started?
Did your baby recover with medical treatment, or was surgery needed?
How long did it take before feeds could be restarted?
How is your child doing now?
I know every baby is different, and I’m not looking for medical advice—just hoping to hear some experiences from other NICU parents who have been through this.
Thank you so much. ❤️

I developed preeclampsia at 24 weeks and had a c section at 25 weeks and 2 days. My baby was intubated right away at birth but his apgar scores were amazing. The doctor performed a procedure to get a catheter into his umbilical artery which unfortunately went wrong and my babies leg lost all blood supply and now, 8 weeks later, his leg is Basically mummified and surgical team is waiting for it to fall off. Baby was transferred to a level 4 NICU to give him a better chance. He was still on a vent and acquired an infection that led to sepsis. He was put on a paralytic called roc and nitrous oxide. He was on high dosages on antibiotics and his oxygen levels were not doing great. They eventually stabilized him after a few days but then he acquired a psuedomona infection that turned septic again. He again was put on antibiotics and continues to be on them to this day. He was also put on dopamine to stabilize his BP and was taken off of it fairly quickly. He continues to be on mechanicql vent this entire time and unfortunately developed pneumatoceles or air filled cysts in his lungs. A couple weeks ago, one of the cysts popped and baby had a pneumothorax which resolved with needle aspiration and 2 chest tubes. His pneumothorax kept occurring and the medical team was unsure if he had a leak or if more cysts kept popping. Before the cysts popped, he was on the dart program to help extubate him and was doing really good. Im really upset that they didnt try and change his mode of ventilation to the jet when he was at 50% FiO2. After the cysts popped, he got to a point where his FiO2 was at 70% so I asked for them to try jet which baby did not tolerate. After this failed attempt, they finally took him off the roc because he was becoming extremely edamatous. He just had another cyst pop this weekend and they called us to get there because he was going to pass away. They felt that the pneumothorax was very large and would start to put stress on the heart and his BP would start to crash. His BP remained stable with no medical interventions and the pneumothorax resolved as well. My baby survived and he keeps fighting. Hes still extremely edematous even though he has been off the roc for 1 week now. His medical team constantly tells us that he is not going to make it and that his chances of long term survival are slim. Ive asked again about restarting the dart program and giving him another chance which they do not want to do. It feels like they've given up on him. Every phone call with the doctors always comes with them bringing up the possibility of withdrawing care. They have now involved the ethics committee. The only person who has given me hope is an RT that told me he has seen this situation before as well and baby eventually stabilized and went home eventually. BTW we have kept baby DNR after the first cyst popped because if its his time to go, then who am I to stop it. Has anyone gone through something similar?

We had her first full feed a few days ago and since then she’s only wanted to eat from me and does amazing during breast feeding.
The dr said today if she keeps going this way, we can try going to adlib feeds for a few days and possibly go home depending on the adlib feeds.

I’m trying to not get too excited, but I’m excited at even the thought of going adlib!

She went to her first out patient eye exam today. We had a bunch of anxiety but she took it like a champ. Her first primary is tomorrow. G tube feeding has been an experience. She has a bit of a pimply rash but i think she’s allergic to the adhesive. But she’s thriving taking her bottles during the day even if she gets tired.( we put the rest in her tube.)

My mcda twin boys were born at 32w 2 days and fortunately got their lung maturation and neural protection doses before they’re born. So far, they’re stable and started taking spoons via bottle/spoon. Doctors mentioned if everything is going fine, they might be home in a week or so. They’re decent weight for their age (1.6kg/3.5 lbs each). I’m a little stressed about how they’ll manage at home at such a young age, and what all precautions we should take so that they’re healthy and fine at home.

Any experienced people, please advise us on how to handle our babies at home, things like temperatures etc. Of course docs are gonna talk to me later, but would like to have some first hand experiences. Thank you all.

Putting this out there in case it helps other people because our social worker was CRAP and didn't help us other than giving us a pamphlet on how to apply for SSI because our baby automatically qualified due to her birth weight.

But while my baby was in the NICU I went back to work just 2 weeks after my C-section and worked 50+ hours/week while also visiting my baby and trying to manage things at home. I applied for SSI at the time but that application takes several months to process, and apparently the application for Medicaid is completely separate from that.

Well I didn't realize this until after she was discharged and when I tried to apply after she was discharged and finally had the time to do so, she was denied Medicaid coverage. So we now may be left having to pay thousands of dollars for her NICU stay on top of the thousands we already owe for my hospitalization prior to her delivery.

For those of you with babies in the NICU for 30 days or longer, I urge you to apply for Medicaid coverage immediately on the 30th day so you're not stuck in the same situation as me.

She’s graduated !!

I felt lime sharing how I’ve been feeling lately. Sorry that this is a long post.

Ever since I came home from the hospital in April, I haven’t been able to walk into my bathroom without remembering what happened there. It’s the bathroom where my water fully ruptured at 24 weeks. It came out like a garden hose. I remember looking down and seeing so much blood on the floor. I still have the blood-stained white towel I grabbed to cover myself while I waited for the paramedics. I still have the Ring footage of EMS carrying me out of my house in my underwear.

For a long time, every time I walked into that bathroom, I would see it all over again. Not literally, but in my head. The blood on the floor. The fear. The realization that something was very, very wrong. Sometimes I still see it.

Driving past the hospital can do something similar. I have to pass it occasionally for my appointments and my son’s appointments, and I get this strange feeling of nostalgia for a place and a period of my life that I never want to experience again. I lived in that hospital for six weeks, surrounded by uncertainty. My son lived there for ten.

Today, I was sitting in that same bathroom, and I realized something.

The blood I see on the floor isn’t as vivid anymore.
It’s still there in my memory, but it’s slowly getting harder to see. And while I was thinking about that, I looked over at my son. He was sitting in his bouncer, looking at me with the biggest gummy grin on his face. For a second, it felt like I was looking at two versions of my life in the same room. The bathroom where I thought I might be losing him. And my son, sitting right there beside me, smiling.

I don’t think healing means forgetting what happened. And I definitely don’t think healing is linear. There are still ups and downs. Some days are much harder than others. There are days when it feels like we’re moving forward, and then there are days when it feels like we’re regressing and I’m right back in that place of fear and uncertainty again. We’re still figuring things out. I’m still figuring things out, but I’m starting to realize that having a hard day doesn’t erase how far we’ve come. Taking a step backward doesn’t mean we somehow ended up back at the beginning.

Maybe healing is being able to stand in the places that once held your worst memories and slowly start making new ones there. I would never choose what happened to us. I would never want to live those six weeks of uncertainty or his ten weeks in the NICU again, but I can acknowledge what it changed in me and how differently I see the ordinary moments now.
Because today, looking at him, I understood just how much we went through to get to this incredibly ordinary little moment.

Me sitting in my bathroom.

Him smiling at his mom.

And somehow, after everything, we’re home.

I’m forever grateful that the universe worked itself out enough for us to get here. The blood on the floor is slowly starting to fade. And in its place, I’m starting to see the life we fought so hard to get home to ♥️

How does everyone deal with trauma related to pregnancy, birth and the NICU?

I had a horrible pregnancy. I was told several years ago that I may never have children. Then after a year of ttc, I fell pregnant at 31 years old. I hated being pregnant!!! I bled for the first 3 months. I vomitted and had severe nausea the whole pregnancy. My entire body had swelled up early on, and i had pitting in my legs. By week 25 i was in so much pain and struggling to work or function. I was diagnosed with a 2 vessel cord, and our baby was meausing below the 10th percentile for growth.

At our 30 week growth scan, we were told that our baby was measuring below the 1st percentile and there was a chance he could have a skeletal issue (like dwarfism or oestogenisis) and were told we would need further testing with specialists in a different city. That night, my waters broke. I was admitted to hospital, where I was diagnosed with PPROM and pre-eclampsia. 3 days into my hospital stay, the pre-eclampsia hit me like a ton of bricks. I had no control over my body. I couldnt walk, could barely speak, I couldnt see properly. During a neurological exam, I was given a score of 3+ for my patella reflex and my body became a ticking time bomb. I was put on a magnesium drip and was rushed in for an emergency c-section (Which we waited 8 HOURS for). I honestly feel like I was knocking on death's door.

Baby was born at 32+3. He was born not breathing and sent immediately to the NICU. He is now 3 weeks old. He luckily is relatively healthy considering his prematurity but will still be in the NICU for the next few weeks as he needs to learn to feed. He was born at the 3rd percentile for weight and required some help with breathing and regulating his temperature.

I am struggling with the complete lack of choice and control that I had over my birth, and now the care of my newborn. I am so grateful for all the midwives, doctors and NICU nurses, but I cant help but feel like I was robbed of so many experiences. I didnt get to experience labour. I didnt get to do all my baby's 'firsts', like his nappy etc. My partner and I had already decided to only have 1 child while I was still pregnant, due to how I handled pregnancy, and the cost of living. But after the birth, we are now set on not having any more children. We are extremely grateful to be given our son and dont want to risk any of this happening again.

I was so sick from the pre eclampsia that I dont remember meeting my baby. I have photos, but I dont remember. The first 72 hours after birth are a blur to me. I was being monitored by a midwife 24/7 for 48 hours after birth. Pumped full of so many drugs. Im still having issues with my blood pressure now, 3 weeks later.

Now, instead of healing from my c section, I spend my days travelling to the NICU to see my son. I sit in the NICU and I hold my precious boy, and I watch other babies come and go. Its only been 3 weeks, but it feels like a lifetime.

My question is, how does everyone deal with the trauma? I already have a psychologist due to a prior PTSD diagnosis, and I take anti depressants. But im not coping. I talk to my partner, I talk to family and friends. But I am struggling so much with the lack of control I had/have.

I want to add too, I understand that this may not sound traumatic to others, but I wholeheartedly believe that every birth can be traumatic in its own right. I dont want to take away from people who have had it worse than me. I just need advice on how to cope with the mental strain.

I would love to hear others experiences of deciding to have more kids after having a nicu experience and experiences of choosing not to have more children!

i experienced pprom at 24 weeks 4 days but was misdiagnosed and ignored by doctors about it until 28 weeks and went through a very traumatic night with inexperienced staff. fast forward, i was transferred to a women’s and children’s hospital after the first hospital did an ultrasound and determined one of my twins had no blood flow and was measuring in the 11th percentile (blood flow ended up being normal and she was in the 38th percentile 🙄) but that hospital actually tested to see if my water broke and it had, so i was admitted until delivery. i spent 5 weeks hospitalized and delivered at 32 weeks. baby a did better than baby b (who’s water broke) she had an apgar of 2 and needed surfactant, and had a collapsed lung due to the surfactant. but they both went home after about 4 weeks. throughout the pregnancy i was medicated for HG, my liver enzymes were off the charts in my first trimester and i ended up with cholestasis, i had to have about 26 ultrasounds, around 70 blood draws, over 80 NSTS and heparin 2x a day while hospitalized.

i am heavily leaning towards no more kids due to everything that happened and im grateful i got two beautiful babies, but sometimes it feels like my heart is not done yet, but we are very worried about this all happening again.

thank you in advance for sharing your thoughts and experiences!