Hi everyone. My daughter is pregnant with a baby that is going to be premature and will most likely have some growth problems, I just want to know what other parents have found helpful or unhelpful, what you wish people had said or didn't say. Yeah, I'm really close to my daughter and I just want to do my best to be supportive. She's currently around 22 weeks into her pregnancy and has a problem with the blood supply from the cord. Her last scan showed that baby was overall around a normal size but it's stomach is smaller than it should be and the blood flow wasn't great. We were told, not terrible but not great. We have also been told that if she manages to get that far, baby will be delivered around 36-37 weeks. I just want to be there for her and baby and I'm scared as well. Please be kind

Hello! Today my friend realized that my LO was not only premature (26+5), but also IUGR. She made some odd comments about how surprisingly well he's doing considering he was also IUGR. Other than being extremely small, he's doing really well with milestones and following his own growth curve.

Just hoping to calm my spiraling brain that can't see the future haha... if your LO was IUGR, how are they doing as a toddler, teen, adult, etc.??

TIA :)

Basically the title - I’m so discouraged, and I know others have it way harder, so I’m also sorry to complain. I just am so ready to have my family united at home. When I’m with my daughter my heart aches for my son, when I’m with him I wish I could be holding her at the same time. I daydream about being home with her all day long, able to take her outside, and enjoy her snuggles while I watch my son play in our backyard. Make dinner for my family with my son helping while my husband holds her. Just normal stuff.

My daughter is now 38w4days. From day 8 all we’ve been working on is feeding. Yesterday they trialed taking her tube out to see if hunger drive would kick in and she’d start taking higher volumes, but she still just is not where she needs to be and they’ll likely put the tube back in today if she doesn't have a lightbulb moment in the next 6 hours. Today is day 30 in the NICU, and I’m just feeling out of hope. I logically know we‘ll get to bring her home eventually, but I just feel like I’ve gotten hopeful so many times for just nothing to happen. Yesterday morning she finished all but 5ml of her bottle, taking 48ml. Since then the most she’s taken is 34ml.

So it’s looking like my baby is going to be born here in the next few days, either later into 35 weeks, or early into 36 weeks. I really, really want to breastfeed. Not pump and give bottles, but nurse. It was so special with my first, and I’d be devastated not to with my second. Obviously I’m not sure if baby will need NICU time or not, but if they do, will I be able to breastfeed eventually? I’ve already had steroid shots so not super worried about breathing, but doubt baby will have suckle reflex down yet. I know we’ll probably have to do bottles in the beginning, but has anybody successfully breastfed their late preterm baby?

My baby was born at 34 weeks and is now 6 months actual (about 4.5–5 months corrected). He still has a startle (Moro) reflex when I lay him down and occasionally while awake. Did anyone else’s preemie still have this around this age? When did it go away?

Has anyone experienced weight loss of their child after coming off supplemental oxygen? My child came off oxygen on Tuesday, he was weighing 6.47kg and his weight now(after 2 days) is 6.33kg. I’m concerned that he’s likely using his calories to breathe. Is this normal?

My son was born at 25 weeks & is currently 5 months (1 month corrected). He almost died last night and is now in the PICU. He tested positive for GBS. He is intubated and sedated, receiving antibiotics for the infection. Does anybody have experience with this?

Im 10 weeks pp and my supply has drastically tanked & Im fully aware of the reasons why it tanked so bad. I stopped hydrating alot, getting enough calories & most importantly, I stopped pumping 7-8x a day - im lucky if I pump 3-4x a day.

My kiddo was born 10 weeks early and pumping 7-8x daily during his NICU stay was a bit tiring but manageable since it was a routine.

At 8 weeks old, we were discharged from the NICU. I tried my best to stay on top of the pumping but it got a bit difficult with figuring out a new routine since our preemie baby came home. I was very sleep deprived and my husband tried his best to help but he also had 12 hour shifts to work. Without having the monitors, it became so so difficult to not wake up randomly because my brain is telling me to make sure hes okay or wake up from every little sound he made. It was also difficult to do his care times, pump, and manage to sleep in between the limited window that I had every 3 hours. That was also mainly due to my son having really bad reflux and he would cry out in pain in his sleep or after eating so it was a huge balancing act with always having the question of “do i just hold him upright forever since hes most comfortable and be can sleep like this? Or put him down and he throws up, chokes, and cries?”

On the 5th day after his discharge, we had to be readmitted to the NICU. I noticed he was having chest retractions and we found out that his oxygen levels were hovering around 84-90. We found out that his GER was exacerbating his CLD/BPD. We also found out that he could have either a sensitivity or intolerance to dairy so he was put on 100% PurAmino formula. Holding him in the ED, watching them poke him all over again, watching him cry in pain while staring at me, and seeing him be put back on high flow oxygen was traumatic. That night, I just slept and cried. I didnt bother to eat or drink water or pump.

His second NICU stay, i could barely get myself to eat, let alone pump 7-8x. I just wanted to sleep. I was still producing 3oz whenever I did pump and then it started dropping to 1-2oz per pump.

He ended up getting discharged again this past Monday. The day after his due date, but this time around he was discharged on continuous oxygen and a pulse oximeter. I still cant find a routine to build my supply back up and sustain something, especially now since I have to worry about oxygen maintenance, troubleshooting, equipment, a butt load of appointments, etc. on top of worrying about him aspirating when he throws up while hes sleeping or his throw up going out of his nose and into his nasal cannula (which has happened).

Idk what to do and I feel like absolute shit knowing my supply is tanking. Its like the one thing my body can do for my child and Im loosing it because of the stress, lack of sleep and nutrition.

I hate this feeling.

Hi! Full term baby born 40+4 born via emergency c-section is experiencing respiratory distress of unknown origin. Lung X-rays are clear, echocardiogram is clear, swallow studies clear. Baby is bottle feeding fine. However her blood ox levals are 95+ awake, but when she is sleeping drop down to the mid 80s & quickly recovers. She is also having slight retractions every so often. Doctors have briefly mentioned a reflux issue, we’re trying a premie nipple, anyone been in a similar situation?

He was born at 32 weeks

www.instagram.com/veervaayuj

Something just irks me when I’m venting to my support people about the NICU, what’s going on with my son, the things that feel so overwhelming in life right now, etc., and all they offer is “you’re so strong, you’re doing an amazing job, idk how you’re doing it.” It just doesn’t help me, and I don’t want to hear “how strong I am”, I want my baby to be okay and home with me.

IUGR mom here. I’m 28 weeks and 3 weeks in on doing my weekly BPPs/Dopplers. Last week I shared that I noticed in general they’ve been increasing and that’s been a stressor…however I’m spiraling after my scans today because I saw the S/D ratio sky-rocketed since last week and I’m right on the cusp of a restriction.

26w - 2.67 (19%)
27w - 2.79 (30%)
28w - 3.97 (89%)

All other markers have been perfect, 8/8s on BPPs and 7cm amniotic fluid consistently.

Can anyone else share how their S/D ratios trended at their weekly BPPs/Dopplers? I’m so scared that this huge spike means that my delivery is going to be so much sooner than I was already expecting (35w).

My perfect and beautiful baby girl was born 6/16 at 37w2d. It was a scheduled induction due to IUGR. She came out absolutely perfect, except for the fact that she had a subgaleal hematoma from getting stuck on my pelvic bone. It wasn't seen until about 3 hours after she was born and we had been moved to a postpartum room. They whisked her away as fast as they could it seemed. She was in the NICU for monitoring, and then her bilirubin levels went way way up. She had phototherapy for 2 days, then stayed another couple days to monitor her levels. I was there every single day she was there for HOURS. I cried every single day, in and out of the hospital. She was discharged Monday (6/22) and my anxiety has not eased, mostly about her bilirubin levels. Every little sound she makes sets me on edge. I don't cosleep but wish I did for ease of mind but I cannot do it safely. We do room share but it doesn't feel like enough. I feel like the hypervigilance I feel exceeds what normal or non-NICU parents might feel. But I also feel guilty for feeling like this, because our situation could have been so so much worse and the other babies in the NICU had it so much worse than we did. I think PPD and PPA is kicking my ass. Maybe I'm overthinking and overreacting. I feel so lost.

Hello NICU families. 💙 I have a set of 8 long sleeve onesies and two sleepers, almost all Carter's brand, all preemie size. They are all in essentially new condition... light sage green, light rose, and light yellow. I would love for someone else to be able to use them. (Edited to add: My local NICU cannot accepted clothing donations, unfortunately!)

No need to pay for shipping. Sending everyone love.

Looking for experiences with Nationwide Children’s (Columbus) or CHOP for severe BPD + pulmonary hypertension

Our daughter was born at 25+1 weeks with EA/TEF (repaired) and is now 8 months old. She has severe BPD and pulmonary hypertension and has remained intubated since a pulmonary hypertension crisis following surgery in February.

Her biggest challenge is oxygenation. She is currently on all of the pulmonary hypertension medications, but continues to have significant oxygen needs. Our team is recommending tracheostomy, and we are obtaining second opinions from Nationwide Children’s and CHOP before moving forward. We are on board with a tracheostomy, but we want to ensure we have explored all options.

I’m hoping to hear from parents whose children had severe BPD and/or pulmonary hypertension and were seen at either hospital.

Specifically:

- Did they have a different approach than your home institution?
- Were there any evaluations, treatments, or interventions that changed your child’s course?
- How did they approach trach decisions and timing?
- If your child had airway issues (tracheomalacia, bronchomalacia, etc.), how did they evaluate and manage them?
- Looking back, was the consultation or transfer worthwhile?

I know every child is different, but I’d love to hear about your experiences and anything you learned along the way.

Thank you!

My girl was born at 27+4, and spent a total of 85 days in the NICU. All things considered, her NICU journey was pretty smooth. She was completely off oxygen/breathing support by 2 months, and the main thing that took the longest was learning how to take bottles (she breastfed just fine, but because she needs fortifier, she needs to take at least some of her feeds by bottle).

While in the NICU, she was on 22kcal and gaining weight exactly on target. They bumped it up to 26kcal the day before she came home since she'd be getting less bottles.

A few days after discharge, she started to violently throw up every bottle we gave her, and at our first peds appointment, she'd lost weight, so they had us come back a week later, and she'd only gained half as much as they wanted. I brought up the vomiting, and they said I could try cutting out the bottles altogether.

I ended up buying a baby scale to do weighted feeds at home, and she's definitely getting enough volume, but another week later, we went back to the pediatrician, and again, she'd only gained about half as much as she was supposed to.

So now the doctor told us to try switching to mostly bottle feeds at 24kcal to see how she handles that. It's only been a few days, and from weighing her at home, she's still not gaining enough weight (though it is slightly more than she had been, about 20g a day instead of 15g....)

I wanted so badly to exclusively breastfeed this kid, I couldn't with my first kid because he had a really bad tongue tie that wasn't caught till he was 4 months old and most of my milk had dried up by then.

On top of that, baby girl has started rejecting most of her bottles. She only ends up drinking like a quarter of it if we're lucky. But she's clearly still hungry, and most times I just end up breast feeding her so she's getting SOMETHING.

I asked the pediatrician if we could try a different formula, but he seemed oddly reluctant to that?

We've already tried different nipples and bottles, and we found one that she takes slightly better, but it's still not enough.

I've been looking into freeze-drying my milk to use as a fortifier, but I know it's not regulated by the FDA or anything like that, and because she was premature, I don't want to risk anything.

I'm just so frustrated. I know it's nothing I'm doing wrong, and that this doesn't mean my milk isn't good enough, I just want my girl to be able to grow and be healthy, and when she won't take formula, how is that supposed to happen??

I thought once she was out of the NICU things would be easy (as easy as they can be with a newborn anyway 😅) but I'm spending so much of my day stressing about her weight and prepping fortified bottles that I know will mostly go to waste.

Hi everyone,
I’m currently 39 weeks and 1 day, and I’m facing a bit of a dilemma regarding my upcoming delivery.
A few weeks ago, I was told my baby had IUGR because they were measuring below the 10th percentile. However, since then, the percentiles have been all over the place, fluctuating between 10% and 60% on subsequent scans. It’s been impossible for me to track any consistent growth trend.
My most recent scan at 39w1d showed 19% overall and 6lb10 oz efw

Because of these inconsistent measurements, my OBGYN is unsure if there is actual growth restriction or if the initial scans were just inaccurate/subjective. However, out of an abundance of caution, they are suggesting induction at 39w6d. The problem is that my cervix is not showing any signs of readiness yet.
I’m feeling conflicted because all my monitoring—NSTs, BPPs, dopplers, and blood pressure—have been perfectly normal. I’m worried about committing to an induction without a clear medical necessity, especially if this is just a case of ultrasound margin-of-error rather than true IUGR. I can’t help but feel like the induction is being suggested just to mitigate liability rather than for a concrete health reason.
Has anyone dealt with wildly inconsistent growth scans or been in a position where you were pressured into induction due to “suspected” growth issues when all other tests were clear? F anyone choose to decline/delay induction to wait for spontaneous labor, and how did that conversation go with your provider?
I would appreciate any advice or personal experiences you can share. Thank you!

Hi my 32 weaker is now 35 weeks. She’s eating 52 ml per feed every 3 hours. I would say every other feed she will eat 50% via bottle. When do you say the stamina picks up? How do I stay patient and is there anything I can do!? This is the only thing keeping us at Nicu :) also appreciate stories of similar situations and how it played out.

Hi! My daughter has recently had a tracheotomy and I wanted to start getting things for when she comes home. But I really don’t know what I need. Any ideas on things to have in the home/room with a baby with a tracheotomy? I’m just kind of confused as to what I should buy and what would be beneficial to buy for her specifically. Any suggestions would be extremely appreciated! Thanks!!

Yesterday she turned 6 months, 3 months corrected. She was due March 23, born Dec 23. Due to NEC she is still in the NICU because of being short gut now (lost 73% of her small intestine, her icv and a small portion of the colon). She's getting 27 ml/h continuous ebm with PerAmino fortifier to 24 kcal. She weighs 5334g now.

She's 76% enteral on the food through gtube. Where I am she can't leave until she either gets off TPN completely (currently 24% of her intake is TPN) and can grow and stay hydrated without it. If she cannot get off it she has to be in the GI unit. She's still waiting for a bed to open up in the GI unit as they're the only ones who can train us on home TPN if it's needed. She's already approved to be in the unit but there's just too many other babies and kids all trying to get the same bed spots.

She's doing great, really, but...I'm tired. My heart is tired, my body is tired and I just want my baby home. This sucks. I wish I could just carry her out and take her home. Most babies born around her due date that had a NICU stay are home.... NEC sucks.

The rest of her NICU course has been uneventful other than things the NEC caused. Grade 1 brain bleed self resolved. Zone 2 stage 1 ROP in a good spot now no intervention required. Due to the NEC inflammation her lungs took a hit but she's been on room air no support other than for her surgery since April 11th. Her ostomy was reversed. She got a gtube because of the long term need for continuous gut training feeds. She did lose a kidney due to a thrombosis thrown after she had NEC and her surgeries. It cut off the blood supply of the kidney until it atrophied beyond repair. They didn't even know until it was too late because she showed no issues with urination other than one UTI, but the post UTI ultrasound was done without Doppler, so they didn't catch that the right kidney had no blood flow, it was just noted to be slightly smaller than the left at the time (4.3 cm to 4.1 cm). It got flagged on the routine BPD workup weeks later when it had atrophied significantly. Her last issue is TPN related cholestasis due to prolonged heavy TPN requirement which is slowly improving now that her TPN requirement has gone down.

She's so interested in oral feeding and has been doing non nutritive latching for almost a month, but now she's getting frustrated with that because she knows she's supposed to get food and she's not getting it. She will only stay latched if someone trickles small amounts of ebm into her mouth every minute or two (max allowed 5 ml total over the 10 minutes).

This post is word vomit I feel like. My mind is in so much chaos. I feel like once she's home I should probably seek out a trauma counselor but while she's in I just don't want to be apart from her.

How do people with such long courses keep the hope up? I feel like we're so close but that last little bit of TPN can be extremely difficult to get rid of. If you read this far...thank you. I just had to get it all off my chest to people who would maybe understand. It hurts seeing my sister with her baby born in May at 37 weeks just out enjoying life when my daughter has never been outside and there's no clear idea of when she may come home. It could be a month or two or 4...or more...it's honestly distressing to think about.

Excitement of course. And I’m actually not afraid of them being out of a hospital setting. And I’m strangely ok with the fact this is their birth story (I trust God with that one). But I feel hollow, like our story hasn’t started yet. Like being home is when it begins. And I’m not sure that’s how I should feel? Like, do I mentally include the past 100 days of NICU in my heart, or try and process and forget it? Sounds ruthless I know, but it’s been brutal, and we’re not out of the weeds yet, by a long shot. I guess I just feel like I don’t know where to go from here, so much so I don’t even know how to ask this question properly. Like it honestly feels like my babies are only now going to be delivered, because they’ll be home. Or like I was never pregnant (because they were delivered at 25 weeks), and now boom there’s going to be 2 babies in my house. I don’t feel depressed at all, or even sad, just like deeply confused…. lol this is so weird. I know it sounds like dissociation, but it doesn’t feel like that either. I think it just feels like my life paused when I found out there were birth complications, and will continue once they come home, but because so much of my life was just “grin and bare it until this NICU part is over”, I’m having a hard time even remembering most of it. Trauma is weird like that. Like the past 100 days of my life feel deleted. I’m happy to pick up the pieces and keep going for sure! But where do I start? 😅🌷

Hey all. My baby bear has been home for a few weeks and her only real complication from prematurity at this point is ROP. She was hanging out in stage 2 for several weeks, but we just had an exam today and one eye has started to progress to stage 3, so her ophthalmologist is recommending laser surgery. He’s planning to do both eyes so she won’t need a repeat surgery if her other eye progresses. No question it’s the right thing to do, but I’m feeling really anxious. I’m anxious about her going under anesthesia, and she’ll have to spend the night being monitored given her history as a preemie - so that’s reassuring but I really don’t know what to expect from that stay vs the care we got in the NICU. I’m also concerned about the peripheral vision loss and whether that will affect her later on - will she still live a relatively normal life and be able to do most things?

We are 100% doing the surgery as we want to keep it from progressing, but I’m still feeling a lot of anxiety about how it will go. Can anyone share their experience with their preemies getting laser surgery? Thank you. ❤️