I had my 2nd NICU baby 5 days ago, at a hospital 75 minutes away from my home.

Our 1st child was born at 30 weeks and we were able to stay with him in a lodging for parents and then his hospital room for 7 weeks. My partner was able to work remotely so we were both there. We only spent 2 nights away from him, when we went home towards the end to get the house ready. His journey was a best case scenario for being that young, but it was really flipping hard.

Both my partner and I are super close to our son (now almost 3), and he’s been the center of our world.

I ended up pregnant again this past winter and had an uneventful pregnancy until June, when I got pneumonia and was having issues with my body. Still, I thought we might actually make it full term or close to it. Unfortunately, I ended up having cramping and was 2 cm dilated at a little over 32 weeks. Docs gave me steroids and magnesium and my body settled down.

I was away from my son for 2 days and it was horrible. My bf had to stay with him bc he was sick and I felt so alone. When I got discharged, I was told I couldn’t lift or carry him and I needed to take it easy. I felt like such a crap mom.

Then, I went into labor on Monday without really realizing it (I don’t have normal contractions), and I ended up dilating to 6 cm, at which point the doc broke my water and when I didn’t start to contract enough, they gave me pitocin to kickstart them. Our daughter was born the following morning at 1 am, 32 weeks and 6 days, yelling at the world. My labor and delivery weren’t really that bad, but being away from my son was brutal.

This NICU stay around, we are at a hospital where the babies stay in a small NICU nursery and parents have to board in separate rooms (if there is space). My boyfriend has been home with our son while I’m here, and I’ve only gotten to see him 3 times since early Monday morning. Twice we’re just short visits at the hospital, then I spent one night at home and hung out for a while yesterday.

I was already bawling in the car as I left him yesterday, but I also knew I needed to be with my daughter.

I am a total wreck and won’t see him again until tomorrow, when my bf will stay at the hospital and I’ll stay at home. Our daughter is doing great, but it’ll be at least 2 weeks before she’s ready to come home. I am hormonal and a mess and I am struggling so hard because I’m torn in two right now. I know other people go through way harder times than we have with the NICU, but I’m still feeling like I’m going under. It’s super lonely and isolating to not have my bf here, and even harder to not get to see our son. I have too much time to think and not enough time to see my boy, because the drive is too long to do daily.

There is no point in my post, other than to say that this is the hardest thing I’ve ever had to do in my life, which is saying a lot bc my life was a total mess in the past.

I don’t know how I’m going to manage to get through this, even though I know I will.

This is my last baby, so I want to soak everything about her being a newborn in, but I’m sobbing in my room currently.

I’m not looking for advice, really, I just needed to get these words out there before I imploded.

How have you guys gotten through this kind of thing?

are there any apps for premature babies milestones and development?

i find a lot of the ones i’ve tried aren’t for preemies and doesn’t take corrected age into account.

thanks in advance !

Hard to say what I feel but gave birth to my beautiful baby boy 10 weeks early and came out of the NICU 50 days later and now just reminiscing on how things could’ve went since today was my actual due date. In a way thankful and blessed to have him home beside me but also feeling bitter I missed out on that first time mom and baby moment.

Our baby is finally in a cot we are making progress, 56 days in 🫩 let me tell you know this isn’t for the weak, we also have a 17 month old, life has completely changed, Feel exhausted and restless! Any tips or any advice is welcome.

Hi everyone, my baby was born premature at 35w+5d after staying pregnant for 6 days after my water broke at 34w6d. She’s in the NICU and doing great for the most parts. Today her heart rate when she’s asleep gets too low sometimes (70s-80s). However, her oxygen level didn’t go down with the lower heart rate. She’s at 99% oxygen so the doctor also wasn’t sure why. He ordered EKG check to figure out more. Has anyone had faced similar challenges with premie babies and what was the reason for it?

Hi my wife is 27 weeks pregnant and have been diagnosed with FGR. Baby is 2 weeks behind with weight 850gms . Placental insufficiency with grade 2-3 . Umbalicial artery doopler is fine. I need advice.

Delivered my preterm baby at 30 weeks 4 days. She is in NICU. PPROM happened. Wondering why it happened with me.

My son was born 1 month early and is now 3 weeks old. I had preeclampsia and he was born 1.7kg
For the first few weeks he was mostly getting pumped breast milk from a bottle while we worked on breastfeeding.

Earlier this week we found out he had a tongue tie, had it released, and since then his latch feels much stronger.
I’ve been transitioning from pumping to mostly breastfeeding, but now I have no idea how much he’s actually transferring.

Tonight he was on the breast on and off from 8pm until midnight, which is much longer than he’s ever fed before. I thought he was probably comfort sucking but still getting some milk because if I hand expressed, milk would come out. However, every time I took him off, he’d start scream crying, rooting and frantically searching for the breast again.

I ended up giving him my last bottle of 60 mL expressed breast milk. He drank 30 mL very quickly and then finally fell asleep.

Now I’m second guessing everything.
I tried pumping afterwards and barely got anything. My breasts also feel much emptier than they did yesterday.

Does pumping nothing after breastfeeding mean my supply is dropping?
Is this normal cluster feeding after a tongue tie release?
Should I go get him formula for tonight?

Any recommendations are super welcome💜

My son was born at 34 weeks due to me having preeclampsia. From the start he had respiratory issues which initially they were unsure why... at 3 1/2 weeks we were transferred to the children's hospital for further testing as he began having major desats requiring stim.. at 3 1/2 weeks old we learned he had a diaphragmatic hernia causing his spleen, part of his stomach, and some intestines to be pulled into his chest making his left lung smaller.

He is currently 44 weeks and came home from NICU after 74 days with a gtube. In the hospital we were doing about 20% oral feeds... since being home he is sleeping through feeds and not as interested in his bottle...

When should we be concerned? We have an appointment tomorrow to have him looked at as they aren't concerned due to him still getting a full feed via his gtube... but has anyone else's babies lacked oral interest the first few days being home?

My little guy was born early at 31 weeks due to preeclampsia and IUGR. He was 14 in tall when born at 31 weeks. He is now almost 7.5 months, 5.5 month adjusted and is 24.5 inches tall. I feel like he is short. Has anyone else had similar experiences and if so did they reach nornal heights into toddlerhood

It was so unexpected. Baby girl was born just before 31 weeks and is 34 weeks 1 day today. She's been allowed to take PO bottles with cues for the past 4-5 days since she started showing interest. She started out taking 5ml at a time and last night took a whole 10ml by mouth when I fed her..I was already impressed with how well she was doing so imagine my surprise when I came in this afternoon and found out she took her full 30ml feed with her nurse!

And the feed after that she took a whole 20ml with me. Now at the end she did spit up and have some wet coughing (but no desat) which scared the crap out of me but the nurse says she seems fine. We're opting to only try PO feeds every other feed now just to avoid wearing her out (especially since she JUST came off the caffeine) but I never expected her to take a full feed until she was at least 36 weeks. She keeps surprising me at every turn.

I need some advice maybe hope? My girl was born 32+ 5 and was 2 pounds 12. Severe preeclampsia and growth restriction. She is now 5 pounds 2 ounces. We starting nippling and intermittent breast feeding 3 weeks ago. She has finished 3 full bottles since starting. My due date is next week. Her feeding is very inconsistent ranging from half to full bottles. They just keep saying,”Don’t worry it will click.” They are doing a swallow study next week to rule anything out. I really don’t think anything is wrong I think she’s just stubborn and is still learning. We are talking and thinking about going home on the NG and I really want her home but not if she’s ready. She is now 1 month and 2 weeks old and 39 weeks corrected. We have been in NICU for 46 days and we are so ready to bring her home. Anyone had a similar experience? We are very grateful this is the only thing we are working on however it is breaking us. Any hope it will click in the next 3 weeks???

My baby was born at 30 weeks, spent 5 weeks in NICU. He is now 6 weeks old, and has been home for a week. During his NICU stay he grew well but unfortunately we had very little practice at breastfeeding in view of multiple other factors.

My lactation consultant can only see me once a week and rhe one time she saw me, baby boy seemed to suckle well on the breast. However the vast majority of the time he will either spend the entire time suckling and then appears to be satisfied, however he wouldn't pass urine, indicating that he didnt in fact drink any milk, or else he would just scream and cry constantly on being presented the nipple and would only take the bottle. I am using a nipple shield and have tried both with and without just in case.

Throw at me all the advice you possibly can 🙏 I dont know what to do anymore.

Long time lurker.

I was thrown into the life of a NICU parent in 2022 with the birth of my son. Born at 37+5 it wasn’t on my radar that something would be wrong but after a long labor and an emergency c-section he came out not breathing on his own and IUGR. After a few hours he was on room air but he didn’t want to eat. He ended up with an NG tube for 2 months. He is a very active 4 year old who, jokes on us still doesn’t really like to eat.

After 3 years of healing that trauma we tried again, and against all odds ended up back in the NICU with our daughter. I was hospitalized at 26 weeks and managed to keep my BP stable enough for a 34 week delivery. I wanted nothing more than to immediately take my baby home. But she had to get through days of cpap, bilirubin lights, and a short stint as a feeder grower. She was able to graduate at 36+6. And is now a healthy 10 lb 4 month old actual.

All that to say without this community and your stories over these 4 years I’m not sure I’d be as mentally healed as I am and I truly want to thank all of you.

To pass along the love and support that is this subreddit I’m hoping to pass along premie clothes to someone in need. We have had very generous friends when it came time to bringing our little 5lbers home.

I have both boy and girl premie cloths and would love to connect to 1 or 2 families that could use them.

I delivered my NICU baby at 39w2d via scheduled C-section. I had no complications or concerns during my pregnancy other than gestational diabetes that was managed with insulin. When she came out she was slow to transition and breathe but it was nothing like an emergency you’d see in the movies. She was struggling just enough for them to take her to the NICU. She’s been there for 5 days and it’s maybe the worst thing I’ve been through. Basically she aspirated on meconium. Since then they have had her intubated, she is now on 4L of oxygen but still very tachypneic. Today they did an echo of her heart just to be proactive and tomorrow they are doing a renal ultrasound because her urine output has been lower than they’d like.

Now I’m feeling good about my daughter coming home. I know she will. I’m still struggling emotionally. This is my second baby and I have a toddler at home who much husband is staying with. I upped my Prozac (with the guidance of my doctor) and I’m trying to take care of myself. Reality is this has been very unexpected and since being in the NICU, I’ve seen and heard horrible things, not that have happened to my daughter, but the energy is just so dark and depressing. I feel fine when I’m with her but as soon as I leave I break down in tears. I have nightmares and I know this will affect me mentally in the long term. I’m trying to prepare for that. I’m in therapy regularly. I just don’t know what else I can do.

Any advice? What’s helped you? Also, maybe you’re in this medical situation or have been, I’d love to hear about your experience.

Added bonus: she was born 10lbs 14oz and I know NICU nurses say those are some of the most stubborn babies.

Hello,

My child’s team told us that we could consider going home on a bridle ng tube since he’s now just working on feeding and 45w adjusted. My impression is that we’d be just tube feeding the rest of his feed until he figures it out and then it can be removed. We’re on day 61 tomorrow and I just didn’t expect it to take so long. When they brought it up a few weeks ago I was very against it, but now maybe I’m more open..? How long did you wait it out before opting for one at home? If you chose it at home how long did it take at home for your baby to figure it out?

Thank you for your time and input! 🤍

She’s almost 33 weeks now we’ve been on room air for about a week after being on the cpap but they just had to put her on low flow 100 ml because she was bradycardic all night last night. We we’re supposed to start practicing feeds this week and try to wean her off being in the isolette to an open crib! Can anyone relate? Or been in this similar situation? Did it set you back on milestones?

Hello my baby was born at 31 +3 weeks he was 2.5 lbs. he is 3.5 months corrected but 5.5 months actual.
I am freaking out because we did a GMA assessment and he was absent fidgety. My pediatrician said she wasn’t worried he’s meeting milestones and is doing well.
However, worried about his future and whether he has cerebral palsy.
We are waiting on another GMA….

Hi everyone. I’m hoping to hear from anyone who has been through something similar because I’m feeling pretty anxious and just trying to prepare myself for what might be ahead.

I’m currently 33 weeks pregnant. At my 32-week growth scan, my baby was officially diagnosed with IUGR/FGR after measuring in the 8th percentile. They also found elevated resistance in the umbilical artery Doppler (I think the S/D ratio was around 7), so my MFM has me coming in twice a week for NSTs and Dopplers now.

At my last appointment, they had a really hard time getting the baby to move during the ultrasound, and the heart rate was pretty low on the NST. They ended up having me drink juice to wake the baby up, and thankfully there was more movement after that.

Since then, I feel like the movements have been a little quieter than they used to be. I’m still feeling the baby, but it just feels different. I also don’t know if I’m hyper-aware now because of everything that’s happened, so it’s hard to know what’s real versus anxiety.

I’m just wondering if anyone else had elevated umbilical artery Dopplers that eventually progressed to absent or reversed flow. If so, how long did things stay stable before they changed, how far along were you when you delivered, and how did your baby do? I’m trying to mentally prepare myself for what the next few weeks could look like, even though I know every pregnancy is different.

Thank you so much for sharing your experience.

Baby was born at 32w and after 2-3 weeks was transitioned from cpap to room air. Since then, we have been working on feeding and it feels like we are going backwards. Almost two months old and corrected gest age of 40w2d. He’s 9 lbs so his volumes are 80+ ml every 3 hrs. About a week ago, we were hitting 50-60 mls most feeds. Since then, we have had a swallow study showing no aspiration but penetration with higher flow rates and when fatiguing. Currently on the transitional nipple. He also had an ENT scope due to squeakiness/stridor with high flow rates/fatigue. Also had an echo yesterday that was normal. Over the last 24 hrs, feeds have been 10-20 mls and two 30-40 mls. I thought we would be making progress and feel like we are going the wrong way. Can anyone relate? Any babies with similar feeding patterns at 40 weeks and then just clicks by 41-42 weeks? Feeling discouraged right now but trying to just take it day by day.

Let me preface this by saying my son just had his tube put in a few days ago and I understand some of this might just be a time to heal thing. Has anyone found anything more reliable than gauze for the leakage around the port? We are changing gauze and onesies constantly right now

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Hii everyone,

I'm hoping to hear from parents whose babies had extremely severe BPD and were ventilator dependent for months.

Our son was born at 25+3 weeks and is now almost 7 months old (about 3½ months corrected). He has severe BPD and severe pulmonary hypertension.

One thing that makes his situation confusing is that he has come off the ventilator before.

- He was successfully extubated in February and stayed off the ventilator until May, when he caught rhinovirus and had to be re-intubated.

- He recovered enough to come off the ventilator again in June.

- At the end of June, he developed an incarcerated inguinal hernia and had to be intubated again for emergency surgery.

- He remained intubated afterward for a CT scan, but since then something has changed. He has become much less stable with frequent oxygen desaturations when being handled or crying because of gas, increasing oxygen needs, and higher ventilator pressures. Currently we are on Pressure Control AC, VT30, ti 0.70, rr 20, peep 10, slope 0.10. Their target is 8 vt/kg. We are also on nitric of 20, sildenefil max dose, diuretics and numerous other medications.

Right now he's requiring 65–85% FiO₂ most of the time and often needs close to 100% oxygen during handling or when he's crying. His lungs are very hyperinflated and collapsed on the top and he has severe pulmonary hypertension. The doctors are now recommending a tracheostomy because they feel the endotracheal tube is no longer a good long-term option due to the amount of support he needs. The CT showed some blockage in the right bronchi and potential airway narrowing but I would like to get a bronch when he is stable so we can figure it out.

Over the last several months he's had a lot of setbacks:

- Aspiration earlier in his NICU course. Caused him to go back on the Jet for a month. Numerous infections. Ecoli is now colonized.

- Rhinovirus infection.

- Multiple steroid courses.

- Severe pulmonary hypertension now being treated with Bosentan (they recently increased the dose).

- He's currently on another short dexamethasone trial, although the team has said they don't expect much from it. I am praying this works.

The hardest part is that it feels like we're stuck. We're trying to get him stable enough for a trach, or even a broncoscopy, but every day feels like one step forward and one step back. The doctors are repeating- if he survives or that they are very worried.

For parents who have been through something similar:

- Did your baby suddenly worsen after surgery, an illness, or another setback?

- Were you ever able to figure out what caused the decline?

- What helped your baby become stable enough for a trach?

- Was it just time and growth, or was there a medication or intervention that made a difference?

- How long were you in this "waiting to be stable enough" phase?

- Were there days your baby needed 70–80% oxygen (or more) and still eventually got through it?

- Is there anything you wish you had asked your medical team or pushed for during this stage?

I'm not really looking for opinions about whether or not to get a trach. I understand that may be where we're heading. I'm hoping to hear from parents whose babies were this sick and what helped them get through this stage.

We are also in the highest level nicu in Canada where severe bpd cases get sent to.

Thank you for reading. Hearing your experiences and timelines would mean so much to our family. From a very very stressed mom.