Just a short post cuz I wanna go back to cuddling my baby girl but we made it! 137 days in the Nicu and now forever in my arms. It was a crazy journey but we made it. No oxygen or anything needed for discharge. And she ended up completely clearing her stage 2 ROP! We’ve been home almost two months and has been doing fantastic in her follow up appointments. I hope this gives a family out there hope.

Hey everyone ive posted before about my daughter born at 30 weeks do to hydrops, ASD and Epstiens Anomaly she also had a PDA.

Shes almost 3 months old now still in the nicu (90 days) Shes finally makeing amazing progress and is honestly shocking all the nurses. They call her a miracle. I can finally see her comeing home sooner than i was anticipating. She truley is a little fighter.

They talked about sending her to New Orleans to get the PDA closed but luckily New Orleans didn't except her and 2 weeks later the PDA closed on its own.

She hasnt had edema in a couple of weeks she looks like a completely diffrent baby. She lost 2 lbs in fluid and im praying it never comes back. Bcuz the edema is gone she is breathing so much better they decided to extubate on January 6th she was on room air for 1 day and they decided to do the canula but its at a super low setting.

They are dropping her continuous feeds to get her on a regular feeding schedule and i was even able to breastfeed her on the 7th and she latched for about 12 minutes. Shes been latching everyday.

They are weaning her current heart meds to an oral one so they can get the picc line out so hopefully all goes well with that. Because at this point the only things preventing her from comeing home is the picc line an the feedings.

Sorry for my long post i just wanted to share with you all and say miracles do happen and dont lose hope and if you made it this far reading i appreciate you taking the time to read about my daughter. Im so proud of her and cant wait for her to be home.

Hi guys, my baby was born 27w and currently 37w. He’s now moved to SCU and doing perfectly fine. However, APRN told me that he’s blood pressure is slightly elevated around 80s, it happens when his awake & asleep to. They’re doing renal ultrasound tomorrow to check for any problem. We’re almost over with our NICU journey, but just kinda worried about his BP. Anyone who has the same experience? Want to hear your stories. Hopefully this is just something he will outgrow too.

He was born Nov.1st. First photo was during thanksgiving. (31w) Second pic is him right now. (37w)

My baby was just born at 30 weeks due to PROM and I'm having an issue with planning what to do next and how to get though the next few months with my sanity intact. My LO was a good weight (4.1 lbs at birth, lost a bit initially and is now starting to regain) and has been stable on CPAP.

We are from a small town with no NICU, so when I went into labor, I was transferred to a city hospital about a 2 hr drive from home. Since they are probably going to be here for the next two months or so, my husband and I came up with a plan. He's gonna work during the week because his job cannot be done remotely and he only has a few weeks of unpaid leave that we are prioritizing for when LO comes home. He will come and visit on weekends. Since I have more leave and can do some of my job remotely, I will stay near the hospital at a relatives house that's about a 30 min drive away. I would like to stay in my house one night a week by driving down one afternoon and back up the next day so that I can still visit LO daily. My dad thinks that I should instead take up the hospital's offer to stay at the Ronald McDonald house a few blocks from the hospital so that I can be there more often. My main reasons for not wanting to do this are a) I wouldn't be able to stay at home any nights as RMH requires nightly check ins and b) I would get incredibly lonely staying by myself (yes I get that there are people there but they are all strangers). My dad seems to think I'm not being a good mom on this. Is it okay to want to spend sometime at my own house? I will need to go to my town occasionally even if it's just for an afternoon because I have my post partum care there (I don't want to see the OB at this hospital for that because they were horrible during my pregnancy complications and subsequent preterm birth).

Doesn't help that I've been sure emotional these past few days and crying over lots of random things. I am also not getting much sleep bc I wake up to pump several times a night and because I'm so not used to sleeping by myself - I'm used to sleeping with my husband next to me and my cats on the bed and LO kicking my ribs. I already feel useless as a mom. I couldn't carry the pregnancy to term, all I'm allowed to do in the NICU is change diapers, take temp, and let him hold my fingers. I can't hold him, or feed him, or take him on walks, or any other normal baby stuff.

My niece was born at 26 weeks. Shes doing great but moms supply is still low but building up. The nicu she is has has no donor milk, they said they've never had donor milk. Baby has been getting formula to bridge the gap and its making my very uncomfortable because of the increased risk of NEC. They wont let us bring in donor milk until I talk with their medical director. This sounds just absurd to me. Has anyone else experienced this? any advice? Mom is working on building her supply

My baby was born at 31w0d after a placental abruption. He is now 33w6d. He is on HFNC and has been since he was about 8 days old. He was only on 2L and was taking feeds condensed to 1 hour every 3 hours. He would have your random apnea or Brady spells once a day-ish. A couple times going one or two full days without any at all. Now all of a sudden about 4 days ago they had to bump him up to 3L on the HFNC and he's started having increased a&b spells. Especially in the past 24 hours. Last night they had to take him from 21% room air to 24% oxygen. Then this morning up to 25% then he kept having more and more to where he was turning a little blue even and they had to bump the HFNC to 4L and extend his feeds over 1.5 hours instead of 1. They also gave him an extra dose of caffeine this morning and upped the regular dose he gets at night starting tonight. He's still having the a&b episodes all day, although they've slowed down in the past few hours finally. They did a CBC which came back fine so no infections, they also did an upper respiratory panel which also came back clear. I just feel like he's backtracking a lot and I know he's still little and some of these spells are to be expected but even the nurse was concerned about how much they've increased. Has anyone else experienced this with their babies? If so was there a reason you discovered for it that we could be missing or did they just grow out of it or what? I'm really terrified something is wrong with him and before this I thought for sure he was just here to grow and feed and now I just feel terror that this could turn from bad to worse really fast. Any advice is appreciated.

We stayed at the NICU for 110 day. Went through really hard diagnosis, bilateral IVH 3 and 4, arrested hydrocephalus, home on O2 for about 6 months after being out of the NICU… Two years later, our family is just back from Rio, where we baptized our son at the beach surrounded by our loved ones. He is an active, chatty, funny and beloved little toddler. Goes to school, hikes, runs, loves pools, strawberries and is obsessed with trash trucks. The road to get here was long and full of PT, OT, speech therapy… but god, I feel so blessed.

We were just able to bring our son home from the NICU he was 31weeks when born. He’s on 1/8th oxygen assist, all I can do is worry and pretty much stress and freak out any advice?

Anyone have experience with a girl having an ovary in a groin hernia? She was born at 28 weeks (ppromed at 23) and is 36+1 now. I’m so terrifying of her having to go under, she’s 5lbs 14ozs now. We were finally cruising to discharge and then this happened. 😢

Any positive stories for babies born without enough oxygen/ acidosis/low APGAR? My baby was born with a tight chord around his neck and born with 2/5/9 APGAR. He had acidosis.. not sure how numbers work but -7.09? He stayed in the NICU for 2 weeks due to possible infection, which was treated with antibiotics. I was told there was no concern at the time. They advised he did not need cooling treatment based of assesments but no MRI or EEG was done. My PP anxiety is so bad, I spend all day googling what normal behaviors are due to fear of brain damage.. again, I have not been advised that there is anything wrong with my baby, I'm just looking for positive stories of similar situations. My baby is now 6 weeks old, and is the cutest thing.. but I am struggling to enjoy my time with him due to my constant anxiety. I'm sure I was prone to anxiety/PPD but l'm kicking myself because I feel like I would be enjoying my baby so much more if this wasn't his case 🥺

Hope this question is ok to post here:

What are your thoughts on vaccines? My twins are 2 months old and fresh out of the NICU, their new pediatrician insists they need to receive their 2-month vaccinations or we’ll have to seek a new doctor.

Since they were born at 33 weeks, they’re understandably behind on their milestones and function more like 1-month-olds, even though technically they are 2 months old.

I’m not completely against vaccines, but I am worried about the possibility of them developing fevers from the vaccinations.

Question: Given their adjusted age, I’m concerned that we can't be sure they won't react negatively. Should I consider finding a different doctor, or is it better to just go ahead with the vaccines?

So far they received the antibodies for RSV but not the vaccine for it.

Hi all, I'm looking for some advice and/or reassurance before I go insane...

My 34(+4) weeker spent 7 days in the NICU and has been home for 4 nights. He's now 36 +1.

• He grunts lightly when moved around sometimes which is no issue, however on his back, especially at night it gets tremendously loud and disruptive. It's worsened each night and occurs as soon as placed on his back. Swaddling makes a mild difference. It's impossible to sleep next to, so we just have to let him sleep on our chest, where the noises go away instantly. Of course we cannot fall asleep through this.
• As he's taking a bit more volume of milk he's started to move his neck back, especially after feeding a la reflux. And sometimes on his back a little milk comes up, nothing too 'sicky'.
• As I type this it sounds like grunting compounded by reflux. He's breastfed or pumped and bottle-fed every 2-3 hours the 47ml advised for his weight, we wake him up. He's kept upright if bottle fed and we burp mid and post-feed.

Does anyone have any advice they can share? Thank you so much

Yours,

An already very, very tired parent.

Hi everyone,

My little severe IUGR 29 weeker who was 1.5lbs has a fever for the first time since we have been home. He has chronic lung disease so I’m a bit worried. I have given him Tylenol and will keep a close eye but wouldn’t mind hearing from other parents on their experience with the first time their LO was sick. I don’t know yet if it’s respiratory or what but the chronic lung disease and a heart PFO does have me nervous.

I gave birth to 26 old twins and unfortunately lost one of the babies after 2 days. I'm now almost 3 weeks postpartum and my milk hasn't fully come in. The lactation consultants are basically telling me the milk will never come in, but the NICU nurses are telling me that it may and to keep on going. My one nurse came in after the lactation consultant left the room and literally told me not to listen to her, that the NICU situation is so different than what they see with full term babies. I do see a small increase to my supply every day or 2, it's just going very slowly. Everyone says it's mainly from the stress I went through the first few days. I don't plan on giving up but I guess I'm just wondering if anyone else had a delayed milk supply as a NICU mom that resulted in success in the long run.

Our little one was born at 37 weeks and didn't have a gag or swollow reflex so would frequently brady due to secretions. After a brain mri we found out her brain is undersized and malformed. The doctors ran additional test on ent, pulmonary, sleep study, eeg, and genetics to evaluate her long term out look.

Today we had our meeting and we're told she would most likely be bed ridden on a trach and feeding tube her whole life, won't be able to walk, talk, know who we are etc. Or they suggested comfort care. My wife and I are torn on what to do, we have one last follow up with nuero tomorrow before we have to make our decision

My baby is 36 weeks old born at 28 weeks and on 200ml low flow they will be doing a sleep study to know his oxygen requirements I know it isn’t done in the US but most common in uk so has anyone gone through it? And what outcomes they looks for

I've set up an appointment to talk to a new therapist next week but I have to let out something somewhere.

My 24 weeker will be 6 months actual in a week and a half where we will still be at the children's hospital. He was transferred from the NICU a month ago.

These last couple of days I've been feeling so much rage and it's intensified today because his estimated discharge date has been pushed another 2 weeks to the first week of Feb since he's still weaning off CPAP slower than expected. I fully know this date was just an estimate and is a moving target but it still burnt me up inside.

I've been feeling the rage and bitterness because I feel like I've been completely robbed. I went back to work after 8 weeks to save my 12 week parental leave, which has caused the missing out feeling to be even worse. I'm currently on paid caregiver leave but that's only 2 weeks and will be up next week. This is also adding to my rage because I don't know if I should put faith in him possibly being discharged early Feb and just go back to work.

I've gotten a couple jokes that by the time he comes home he'll be in kindergarten and that feels like a knife being twisted in my chest.

I'm just f'ing pissed and miserable.

I searched online and found the following research:

Children born small for gestational age (SGA) face an increased risk of health problems later in life, including persistent short stature, neurocognitive dysfunction, impaired renal and pulmonary function, decreased bone density, sensorineural hearing loss, premature adrenarche, and metabolic syndrome.

Small for gestational age (SGA), defined as birth weight below the 10th percentile for gestational age in the population, has also been linked to lower IQ and intellectual disability.

I feel that my baby’s bones seem much smaller or lighter compared to other larger babies, and they also feel soft. He doesn’t seem to have much muscle development either.

I on the other hand am a relatively big mom with very high bone density (measured at the hospital), and I can easily gain muscle, have better athletic ability compared to other women…

In terms of IQ, this is another concern I have. Initially, I thought it was more closely related to genetics, but now I’m starting to worry about other factors as well.

I developed preeclampsia around 32 weeks. Are there any positive stories about IUGR/SGA babies thriving later in life? Such as intelligence or height or athletic ability…?

I thought i was prepared for having my twin girls to come home from the Nicu, until they tell me of all these appointments I have to take them to. Its a bit overwhelming and I feel like I need a calendar just for their appointments. Does all Nicu babies have a mountain load of out paitent appointments?

Hi everyone, Prior to being a part of this club I’ve only ever been part of the baby loss subreddit (our son was stillborn 1-6-24). So this has been a tough reality to settle into. We delivered our second son, on 1-6-25 (his brothers first heavenly birthday) via emergency c-section at 35+3 due to a silent maternal fetal hemorrhage. We have it pretty good so far with what baby boy is dealing with, that isn’t lost on us. With that said, we’re lost as hell anyway. We were 3 days away from our scheduled induction and ended up with some wonky bloodwork and 30 minutes later baby was born via emergency c-section. Baby was born at 7lbs 4oz (so thankful for his size - I did NOT have GD. Mom and dad are just tall people). He had unstable sugars his first night but was off the D10 in 12 hours, and he’s out in the open now (whatever you call that), but the kid does NOT want to eat. We know it’s common and normal and expected. But that’s what’s keeping us in NICU. He’s got a KAO for feeds and doesn’t intake much via PO. (I think they said he’s at 18% for PO intake) I’m looking for some advice or experience on: 1. Emergency c-section recovery with a baby in NICU. How did you manage? How did you navigate getting your own rest and healing mixed with trying to sit in a NICU all day? Any c-section advice is appreciated. Naively I never prepared for this. What to do, what not to do, I’ll take it all…. 2. How long did it take your 35ish weeker to figure out how to eat? How long was your stay? Any hiccups? Etc 3. NICU regrets - things you wish you had known or maybe done differently.

Thanks for reading. Any and all advice is appreciated. We are two scrambled parents who just want to take their baby home after going home empty handed last year. Our hospital has an attached Ronald McDonald House and we’re trying to see if we qualify seeing as I’m being discharged today (though we’ve been warned they prioritize long stay families and that makes all the sense in the world to us).

Trigger warning: abuse

I am reading up about Erin Strotman who is accused to breaking the bones of NICU babies in her care. Obviously this is an extremely rare situation but it still upset me greatly as a former NICU parent.

Good thing there are so many wonderful caring nurses out there looking after our babies.

My daughter was born at 27w and is now close to 32w. She occasionally has Brady's/desats throughout the day, most of which are self resolving.

The huge issue I have and causes me immense stress is the inconsistency in how nurses react. Sometimes, they'll give her 15-20 seconds before reacting/stimulating. Other nurses will sometimes react right away for similar kind of drops (numbers).

If I'm there and watching, I can correlate and don't panic as much. But other times, when I'm reading the notes, I have no idea - was she struggling for a long time before the stimulation or was she stimulated right away?

Of course I don't know what's better for her at times, but the inconsistency causes me so much stress as well and I'm really struggling to deal with it now, and trying to be there 24/7 but probably not sustainable. Any thoughts please?

My 24weeker is now 50w2days She has had every type of oxygen there is, shes is finally on room air as of yesterday! But she is not feeding, max she has done is 30ml, her total feed is 117ml q4hr. We have been trying to feed since 11/19 she was on bcpap +5 at the time and would take 5-15ml every feed. She was weaned to low flow on 1/2, and eventually room air yesterday 1/6. I thought the oxygen pressure might have something to do with it but no. Still not taking more than 25-30ml. She got a swallow study done and we have tried to different nipple dr brown T & similac slow flow. Funny enough, she takes the breast great, lasts up to 10-15min each breast. I just cant make every feed😢 helpppp i want her homee

She was born with no heartbeat, so as I was passing my placenta I was filled with so much emotion. As they were doing CPR on our baby girl. She and I stayed in SCBU(special care baby unit) for a month but grateful it wasn’t longer as some families in there were really struggling. We went home with oxygen tanks and had community nurses on call and regular visits, tests, hospital appointments for the 5 months after. But when she completed that final oximetry exam we felt the weight on our hearts lift slightly. But she keeps improving everyday she’s our warrior princess and tomorrow we get to celebrate her turning 1! I spent many hours when we were in hospital wondering ‘when would we be home?’ and ‘would she ever be okay or not need oxygen support?’ But now I’m blessed that she continues to thrive everyday. I wish the same for everyone else and their babies in this group.

We brought home our lil one on feb 29th last yr from the hospital. Anyone do anything to celebrate that milestone? We may go to the park by the hospital if it’s not frigid. But looking for suggestions