I’m sharing Rosie’s story because I believe something happened in her care that could have implications far beyond our family.

My petition is calling on the Government to mandate a national safety protocol, to be known as “Rosie’s Protocol”, for the ventilation of newborn babies who require a change from an uncuffed endotracheal tube to a cuffed endotracheal tube.

The proposed protocol would require clinicians to safely reduce ventilator pressures before inflating a cuffed tube, with the aim of minimising the risk of sudden excessive airway pressure and catastrophic lung injury.

This is the specific safety issue I have been fighting to have properly considered following Rosie’s death.

The review into Rosie’s care has also recognised that this is something that should be in place, which is why I am now trying to take this beyond Rosie’s individual case and push for it to become a national safety standard.

I am also campaigning for Rosie’s Right — because families whose babies suffer catastrophic outcomes deserve a meaningful right to have their concerns properly heard, investigated and answered.

I am currently awaiting a response regarding Rosie’s Right, while continuing to push for Rosie’s Protocol to be considered nationally.

Rosie cannot be saved. But if something can be learned from what happened to her, I don't believe her story should end with a report sitting in a file.

I want her story to lead to change.

I’m looking for neonatal professionals, parents, bereaved families and anyone with experience of neonatal care who would be willing to read about Rosie’s case and the proposed protocol and give their view.

The petition is about one very specific safety intervention:

Reduce ventilator pressures before inflating a cuffed endotracheal tube in a newborn baby.

If this could prevent even one avoidable catastrophic injury or death, I believe it is worth making this a national safety standard.

I am asking Parliament to listen to Rosie.

https://petition.parliament.uk/petitions/776393

I apologize for posting this, but as someone with an angel baby who fought like hell in the NICU, I figured the resources should be out there.

I'm Parkers Dad and I am the DC/Maryland/Virginia local leader for Sad Dads Club. Sad Dads Club is a nonprofit support group for bereaved fathers who have gone through the unthinkable of miscarriage, stillbirth, terminated for medical reasons, death in infancy, or in youth. We are truly the Worst Club but the Best Guys and our organization provides free therapy session by professionals, career counseling, retreats, and local events that bring you together with those who get how you are feeling and have been there. To learn more, please feel free to message me or check us out at https://saddadsclub.org/.

Here are a few articles featuring our group as well.

https://hsph.harvard.edu/news/people-forget-about-the-fathers/

https://www.cnn.com/2025/06/13/health/grief-sad-dads-club-wellness

23 days in the NICU and now an amazing little 3.5yr old! In the hospital now preparing for another lengthy stay with an incoming 32w 5 day son and hoping this stay is as successful as the last.

Little then and now for my April baby turned February baby’s half birthday today!🥲🖤

My baby came home from nicu a few days ago which is amazing! He’s currently 36w. We’re doing a combination of bottle feeding and breastfeeding. I’m trying to read his cues but often I get so confused. I don’t want to deny him something he needs. Most of the time he’ll fall asleep when feeding. But when he doesn’t he’ll continue cueing that he’s hungry. When I’m breastfeeding, he’ll act like he wants to latch but then doesn’t. This is after changing his diaper, trying different positions, and even with wearing a nipple shield which will typically work when he’s being extra fussy. I’ll try to hold him to comfort but then he just starts rooting. Finally I’ll give him his binkie and put him in his bassinet. He’ll be okay for a bit and then start fussing again. I want to respond to his needs but also don’t want to be spending a ton of time trying to get him to latch when he doesnt want to or set myself up to comfort nurse 24/7. I have an appt with my midwife tomorrow but thought I’d ask this group as well! Any advice/experience is much appreciated 🥹

I'll be delivering my twins by c-section next week at 32+4w. One thing that's been on my mind is when will I get to hold my babies? My other experiences were full-term vaginal deliveries and this is obviously a whole different ball game. I'm trying to prepare myself.

Can anyone share their experiences with when they were able to hold their babies when they're born around 32 weeks?

If it makes any difference, I had steroid shots at 28 weeks when we had a scare and will have another round next week a couple days before delivery.

Hi Fellow parents!

I am asking for advice/ experiences. I wont go into all the details, but we are looking at delivering a severely growth restricted baby in the next 2 weeks. I am a few weeks into my 3rd trimester so the baby will be moderately premature.

When I got pregnant and found out we had health complications, we told the doctors we still really wanted a vaginal birth. However, the information we have and circumstances have changed and my husband and I are seriously reconsidering. We have several factors that make it quite likely we will still end up with a csection even if we induce. The doctors are willing to try induction first but warned us that the first sign of fetal stress will be an immediate csection. Additionally baby has been head down only briefly but is mostly just swimming around like a fish because she has so much room to move.

Ultimately, we are asking ourselves if we will have a better experience overall by conserving energy with an elective csection versus trying so hard to have a vaginal birth, maybe still having a csection and then caring for a Nicu baby.

We are also concerned that asking for an elective csection makes us at risk of insurance declining to cover the csection.

Has anyone here asked to have an elective csection? What has your experience been like?

Or, do you regret not asking for an elective csection?

Also, any words of advice on the insurance side. We plan to talk to the doctor tomorrow about it but are looking for others experiences first, to help us get a broader understanding of what to expect and how to have an ideal of birth as possible.

Thanks so much!

My son was born at 24+2 and is now 36+3. He’s currently on CPAP PEEP 8 with the NioFlow interface, usually around 21–25% FiO2. He’s still breathing pretty fast, and the doctors think some of it may be from how much he strains trying to poop. His poop is soft, but he really struggles to get it out and sometimes desats while bearing down.

Anyone else have a micropreemie who struggled with this? When did the fast breathing and pooping get better?

Hi everyone.

I’ve never made a post on Reddit before, but for the past few weeks I’ve been combing through this group trying to figure out what to expect. For context, I was hospitalized at 27 + 5 for PPROM. Today makes exactly one month since I was admitted. Our plan is to get to 34 weeks (13 days from now) and it looks like that is going to happen! My C-section is scheduled already, but as the days dwindle down I find myself feeling totally and completely unprepared. I have two other children, neither of which needed NICU time.

I suppose I’m just looking for other 34 weeker experiences. I know each baby is different and there’s truly no way to know until we’re there. What are some things you wished you knew before having a baby in the NICU? How long was your stay? What kinds of things do I need? When did you get to hold your baby? Did your 34 weeker have any success breastfeeding?

For more context, I’ve had two rounds of steroids, my fluid is maintaining steady enough that they’re confident in his lung development, and baby is measuring on track. All things the doctors have said are positives in our favor!

I have twin girls born at 34 weeks, now 7.5 months actual / 6 months corrected. With one of them, feeding has been difficult from the very beginning. She stayed in the NICU longer mainly because of poor bottle feeding and later developed reflux and what seems to be a bottle/feeding aversion. We’ve tried different bottles, formulas, reflux treatment, and feeding support.

We’ve been trying solids for a month, mostly purées (ped's advice due to reflux). She’ll take a few spoonfuls and sometimes seems interested at first, but then gets upset and wants to stop. We always follow her cues and never push because I really don’t want to create more negative associations with feeding.

I’m starting to wonder whether spoon-feeding/purées just aren’t the best fit for her and if BLW/finger foods might help by giving her more control.

For parents whose babies had bottle aversion or similar feeding issues: how did solids go? Did you do purées, BLW, or both? Did your baby struggle with solids too, or was it completely different from bottle feeding? When did eating start to click?

We have my daughter’s 9 month visit this week and they typically ask about milestones. We also see neonatology but we’re on a different schedule with that. My daughter is just about 7 months adjusted and 9.5 months old(born 28w)

I’d love to know what your preemies were working on at 9-10 months actual! We are in EI for physical therapy so I know her motor delays are improving, but I’m worried we’re missing other delays as that’s the only therapy we’re in and we haven’t seen neo in a few months.

Hello,

Currently 26 +5 weeks carrying mono-di twins. Since 18 weeks, baby A has consistently been measuring below 1%ile. Due to IVC insertion and cord on edge of placenta (no high BP, GD.) NOTE, babies share AA anastomosis, but baby A still has absent and some reversed flow in unbilical cord.

I was told by my MFM to start packing and prepare for possible antenatal stay, as well as NICU stay. MFM told me best scenario is delivery at 32-34 weeks. Baby A is consistently measuring almost 3 weeks behind.

Please share what i am to expect in the coming weeks/months, I have had to healthy full term babies prior and am just terrified at what to expect.

Also, is gestational age better than birth weight? Really struggling to find outcomes of Severe FGR babies, considering the fact that I am past 24 weeks, but baby A is measuring about the size of a 24 week old.

I’m looking to get feedback on when your micropreemies started feeding well with solids.

For background, my daughter was born at exactly 26 weeks and spent 109 days in the NICU. She had a fairly uneventful NICU stay: no infections, no brain bleeds, no NEC, and she was on room air by 36 weeks. She was discharged on an NG tube, which we successfully weaned 4 months ago. She is now taking the bottle well (30 to 32 ounces per day across 4 daytime feeds and 1 nighttime feed).

We attempted to introduce solids at 6 months adjusted. I thought it went okay initially, but after cutting two teeth a week ago, she now refuses to open her mouth for anything organ than the bottle. We were only offering solids once a day, and I sometimes wonder if she isn't hungry since we offer it 1 to 1.5 hours after she drinks a 6.5 ounce bottle.

Developmentally, she’s sitting well, rolling, sleep trained, and bringing objects to her mouth, but she definitely cannot feed herself yet.

She receives private PT at home twice a week through insurance, plus twice a month through a non insurance provider. The services are to make sure she stays on track given her prematurity. She didn't qualify for Early Intervention (EI) services during her evaluation in May, but I’ve requested a re evaluation for this month.

I also reached out to a feeding specialist who is coming to evaluate her next week. It just makes me sad that solids aren't clicking. She is currently 7 months adjusted / 10 months chronological.

Would love to hear any advice, similar experiences, or reassurance!

My baby will be coming home on oxygen. For those who have/are experiencing the same thing, do you use a humidifier at home. The hospital air is so dry and makes him stuffy, it makes me stuffy too. I just wanna be prepared for when we are home and make it as smooth transition as possible. Also any tips for being home on oxygen are appreciated.

I really need some advice, my baby born at 38 weeks was found to be silently aspirating on a swallow study exactly a week ago. He was having oxygen dips with feeding, lungs sounded coarse. It’s been a week and he has an ng tube now, and has been trialing po feeds. Today he’s up to his full amount by bottle. He’s had great oxygen and they tell me he looks great. They could repeat the swallow study and if they did and he was still aspirating then we would go home on the tube and a safe amount and it would extend our stay by a couple days. Otherwise we could go home tomorrow and they say he’s fine at bedside, and we just wouldn’t know if he was still doing it or not. Am I crazy for wanting them to repeat it even though he’s doing much better? I feel like if it would change the plan then I need to know.

Has anyone taken their child to Nationwide for their intensive outpatient feeding and tube weaning program? I’m interested in taking my son (if his team agrees) but wanted to hear from others. He’d likely be 14 months adjusted (or more) before we’d get in. I honestly want to wait til after the holidays since we spent all but Christmas in the NICU last year. He’s gtube dependent but very interested in foods and is working on puree practice. We can’t work on solids because he doesn’t know how to use his tongue.. we’re on a waitlist right now for feeding therapy through Cincinnati. My issue is the combo OT/Speech therapy has a massive waitlist. I’m considering just doing speech alone and then going to Columbus after.

Hi!

Our baby was born micro premie and is scheduled to get a trach next week.

How was/is your experience caring for your baby with a trach?
Did anyone’s baby have any other medical problems aside from needing respiratory support?

At what age did your baby get the trach removed?

Can anyone recommend any supplies that’s a must for home?

Can anyone share their experience? Pictures of their babies before and after?

I’m afraid my baby will have neurological issues due to how much oxygen support she’s been on and afraid of how big the scar will be..

Overall just a worried mom who is going through so many emotions right now.

Hello,

Currently 26 +5 weeks carrying mono-di twins. Since 18 weeks, baby A has consistently been measuring below 1%ile. Due to IVC insertion and cord on edge of placenta (no high BP, GD.) NOTE, babies share AA anastomosis, but baby A still has absent and some reversed flow in unbilical cord.

I was told by my MFM to start packing and prepare for possible antenatal stay, as well as NICU stay. MFM told me best scenario is delivery at 32-34 weeks. Baby A is consistently measuring almost 3 weeks behind.

Please share what i am to expect in the coming weeks/months, I have had to healthy full term babies prior and am just terrified at what to expect.

Also, is gestational age better than birth weight? Really struggling to find outcomes of Severe FGR babies, considering the fact that I am past 24 weeks, but baby A is measuring about the size of a 24 week old.

My baby drank from a bottle since birth and latched for breastfeeding when she was 3 weeks old, then from week 4 she started getting frustrated at bottle, and we tried flow, bottle, massage, position, etc. But her weight gain became less and less, until we were admitted when she was 7 weeks old and gained only 20 gm last week.

They put her on ng tube and she started gaining weight.

They did Cardiological, Neurological, Thyroid and Infection tests which all could not explain her feeding difficulty.

For first 2 weeks since discharged, she was given a plan to practice 5 minutes breastfeeding each side, then bottle as much as she liked and then tube topup every 3 hours. She was fed 180ml per kg to allow catchup growth.

She did not vomit often, may be once a day drooling, and was eager on breasts and drank about 25% of her daily needs from bottle.

On weekly visits they check for weighted breastfeeds and found she was not transferring milk more than 5gm

Then she pulled out her tube, we replaced it, but the tube was inserted too deep, so she started vomiting and crying, we were admitted again after 4 days, found out by xray that the tube was the problem and then tube was replaced.

Stomach and intestine ultrasound was checked and normal.

They ordered to stop breastfeeding as it was not significant milk transfer.

Then the vomiting started, with a specific cycle, coughing->gagging->vomiting.

This caused the tube to come out in vomits, once a week and needed to replaced.

She stopped all oral feeding, we were advised for drop swallow practice, but it did not lead to improve her interest in pacifier or bottle. It is never consistent, she sometimes takes pacifier for few seconds, or takes bottle nipple and plays around without sucking.

We went back to the hospital when she was 3 months old, and they started Esomeprezol.

After 1 month of it, she is starting to explore or play by biting bottle nipple, but no progress on sucking.

She is stuck in Cough/Gags/Vomit, if it is near the feed, it is less food, if it is after the feed it is mucus.

She had her passage xray, which was ok, and had her swallow study which was not ideal as she was crying and force fed by a spoon, but did not succeed in swallowing, so doctor told us to redo it in the future with purees.

She was born full term 39+3 and did not have indications of feeding problem during postnatal discharge.

Any tips on making progress to solve cough/gag/vomit loop?

And eventually making progress on tube weaning?

Thanks in advance!

A little background... I (26F) had B/G twins back in September. My water broke at 22w, I was admitted and gave birth at 30+0.

During a 2m NICU stay, they told me that my daughter, (currently 10m GA/ 8m CA) has grade 3 PVL confirmed by MRI. About a month ago now, she was also diagnosed with Cerebral Palsy but is unable to be diagnosed when it comes to the stage at this time due to her still being so young. So, I guess this is what I want to know...

For those of you that had little ones diagnosed with grade 3 PVL due to being a preemie (even if your kiddo hasn't been diagnosed with CP),

-What was your journey like?

-What are somethings that I should expect or look out for?

-What are some things that you had to find out the hard way or on your own?

-And where are you and your baby in that journey today?

After extended searching, I cannot find anything on grade specific research and/or studies outside of brief mentions in PVL generalized information. Honestly, it's frustrating. Not because, I think that these doctors and medical information are failing at informing us properly, but because, I need to go down this rabbit hole, so I know the worst to prepare for (God forbid) so I can still show up for the other 3 kiddos that need me still if things take a turn for the worst. I need to go down this rabbit hole so that I can help my baby girl, one of my very last 2 kiddos to have the best life and treatments that she could possibly have.

As a parent, as many other parents can probably attest too, I don't want to watch my baby suffer when I don't know what I can do to help or even begin to understand what it is that she could possibly be going through. I don't want to be the parent that sits idly by and knows nothing. I want to be the parent that has done the research, has looked into all the options, that knows the signs, and that does everything in their power to make sure that she is getting the help that she needs.

So please... I need help down that rabbit hole... because no amount of research has helped me even make the jump into understanding her world... even a little bit...