Just wanted to say i’m thinking of everyone who is still in the NICU, that your babies continue to grow and heal and make it home to you. Giving extra love to the families who babies didn’t get to make it home. Not a club any of us ever wanted to be a part of, but i’m glad we have this community to lean on. ❤️❤️

She started ABA therapy today ❤️

Hi everyone. I’m looking to connect with anyone who has had a similar pregnancy and hear how things turned out.
I’m currently 23w2d and being followed by MFM for severe early-onset fetal growth restriction. I have an amnio scheduled today.
Here are the details so far:
• Dating is considered accurate based on an early ultrasound.
• At 5 weeks baby measured on time.
• Around 7.5 weeks baby measured about 1 week behind.
• At 11 weeks baby measured about 5 days behind.
• At 20w3d baby was estimated at 10 oz and around the 3rd percentile.
• At 22w4d baby measured 364g (13 oz), <1st percentile
The growth restriction appears to be very symmetrical, with head, abdomen, and long bones all measuring similarly.
Other findings:
• Detailed anatomy scan was normal
• No soft markers identified
• Normal amniotic fluid
• Normal umbilical artery and MCA Dopplers
• Normal ventricles and cisterna magna measurements
• Posterior placenta
• Eccentric cord insertion (slightly but noted)
• Breech presentation
Testing:
• NIPT low risk
• Infection testing negative
• Autoimmune testing negative
• Amniocentesis scheduled to evaluate for possible genetic abnormalities or chromosomal conditions that may not have been detected by NIPT
Pregnancy history:
• I had a subchorionic hematoma early in pregnancy that resolved around 12 weeks.
• I also have a healthy full-term child born last year.
Has anyone had a pregnancy with severe early symmetrical FGR, normal anatomy, normal Dopplers, and a low-risk NIPT? If so, did you ever get an answer for the cause, including whether genetic testing identified a genetic abnormality or chromosomal condition? How did the rest of your pregnancy go, what gestation did you deliver at, how much NICU time did your baby need, and how is your child doing now?
Thank you to anyone willing to share their experience. ❤️

Hi everyone, looking for some support. My 26 weeker (10.5m chrono / 7.5m adj, 17 lbs 6.8 oz) weaned off her NG tube 4+ months ago and has been thriving, but I’m spiraling over a sudden drop in her bottle intake.

She used to consistently take 28 to 33 oz per day. Lately, we have had a lot of big changes hit all at once. We increased her silent reflux meds 1 week ago, moved from 3 naps to 2, started slow rolling a transition from HiPP HA Stage 1 to Stage 2 (currently a 75/25 blend), and dropped from 5 feeds to 4 per 24 hours (including one dream feed) because she was getting playful and distracted during that bottle.

She never compensated for that eliminated 5th bottle, and her intake dropped from 28 to 33 oz down to 23 to 26 oz per day. Solids aren't taking off yet either, maybe 4 to 6 spoonfuls of yogurt max. A feeding therapist comes Friday, and she does PT 10 times a month. She’s hitting developmental milestones, but I’m so traumatized from our NICU stay and terrified of her regressing or needing a tube again.

Did your baby's intake drop temporarily after a reflux med adjustment? Could the Stage 2 formula taste different to her? Did anyone else’s baby take 20 to 25 oz at 7.5m adjusted and keep growing normally?

My LO has been in the nicu well over 100 days now at Texas Children in Houston, largely due to her small size and need to grow. She was moved over to the BPD team but I feel like they are stalling her progress. She has been doing so well but their lack of effort to wean her respiratory support have me hesitant about keeping her on that team. For context, she is on LFNC of 0.5L and been on 21% for at least 2 months. Her vitals are great given her baseline as sometimes being tachypneic. Anyone have any experience with this team? Before being on this team, the doctors were more open to weaning her, but even when they agree with me, they still have to refer to the BPD team who always seem overly conservative in their approach and methodology. It was actually a challenge convincing them to put her on LFNC because it wasn't part of their practice. I made enough noise about it and they finally did.

Hi! My baby boy was born 1 month early and measured 5 weeks late of growth (feral growth restriction due to a problem with the placenta). 1700g for 42cm.
He’s now 2 months old and has gained plenty of weight (3420g 51cm) but he can never settle. We’ve tried everything, rocking, swaddling, white noises, music and nothing seems to work.
He literally only sleeps when we take him for a stroll (but wakes up as soon as we’re home) or he cries himself to sleep.
We tried soothers that won’t calm him, he’s breastfeeding and just won’t take them.
When he falls asleep in our arms it’s almost impossible to put him down without him waking in the 5 following minutes…

I feel like it’s a battle

At night I tried getting up to every cry, and putting him back in bed but I cant manage the next day with my 2 older kids so we end up co-sleeping and he just seems to breastfeed through the night.

Is it just the premature syndrome of always wanting to be in our arms?? He burps really easy so I don’t know if it could be colic’s.

My parents always let us self soothe and told me to let him do the same and people around us too but I feel awful.

Is this normal? Does it calm down? 😓

Hello, it’s me again.

Two days ago, our lives changed in a way we could never have prepared for. My wife gave birth to our first baby boy at only 25 weeks. He is incredibly tiny and precious, and he is currently being cared for in the NICU.

We had always imagined that our first days as parents would be filled with holding our baby, bringing him home, and introducing him to our family. Instead, we are standing beside an incubator, watching the machines, listening to every sound, and praying that our little boy continues to fight.

My wife is also worried because she is currently producing only one or two tiny drops of colostrum each time she pumps. We understand that even these few drops can be extremely valuable for a premature baby, but we are unsure how to handle them properly. Should she collect the drops in a sterile syringe, label it, and place it in a breast-milk refrigerator? Or should we give the syringe directly to the NICU nurses immediately?

This is our first baby, and everything happened so suddenly. We are still in shock and trying to understand all the emotions inside us. We feel scared, heartbroken, grateful, hopeful, and happy to finally meet our son, all at the same time. I am trying to stay strong for my wife, but honestly, I am frightened too.

To other NICU parents, especially those whose babies were born around 25 weeks: could you please share your experiences, advice, or hopeful stories with us? How did you cope during those first few days and weeks? Did your wife also produce only a few drops at first, and when did her milk supply begin to increase?

Any guidance, encouragement, or positive story would mean so much to us right now. We are taking this journey one hour at a time and praying that our tiny fighter continues to grow stronger every day.

Hi all!

I’m working with Miracle Babies to create a social media campaign advocating for additional leave when babies are in NICU or SCN. I’m looking for families of premmies to learn about how lack of extra leave and pay etc affected them.

It’s called the 58 Days Campaign (how long my son was in for).

Socials are all '58dayscampaign' (Instagram and TikTok)

If you’d like to be involved or know someone who’d like to be, please have them complete this form:

https://forms.gle/ms5KVPy9vbZWNC7b8

To read more about the Paid Parental Leave Alliance and what Miracle Babies are doing check out this page: https://www.miraclebabies.org.au/content/additional-paid-parental-leave/gjtf0g

My baby is okay and does not have a fever!! Just wondering!

I know babies under 3 months who have a fever should go to the ER, so for a preemie would that be 3 months corrected age?

Hiii fellow nicu parents. My son born at 27+3 & is now 40+3 is about to get discharged and we have to decide between an NG tube or G tube due to silent aspiration he can only take 10ml by mouth. He has BPD & was on cpap up til 38 weeks then hi Flo & now lo flow. They think his lungs history & taking longer to come off support added to his inability to swallow.

They will reassess him with a swallow study in 3 months.

We are leaning toward NG because we believe he just needs more time, but the medical team is recommending G tube & their reasonings are all due to convenience (baby pulling it out, getting aversions from the stickers on his face, difficulty with hands to mouth). I’d rather not put him through surgery for convenience even if it requires more maintenance from us parents.

Anyone with NG tube for their babies can share pros & cons? Related to the tube, development, oral aversion or anything?

Thank you!!

Just wanting to ask parents of severe/global brain damage parents. My daughter has global HIE from lack of oxygen at birth and we were told she wouldn’t be able to see, hear, walk, and have severe cerebral palsy. As of now, she can see, hear, and has good muscle tone and eats bull bottles, latches on to the breast, smiles, coos, and does everything like a normal newborn. Obviously we cant know the extent of the neurological damage yet. But parents of kids with severe damage, was it obvious from birth or did it slowly manifest? Its so hard to imagine her losing skills overtime.

Hello all,

Just wanted to share our story. My wife is pregnant with our daughter, and two weeks ago it was detected that she was undergoing rapid cervical shortening (almost by accident - we are glad our daughter did not cooperate for anatomy imaging and we had to come back a week later). Her cervix went from 3.7cm -> 2.3 cm in 1 week, and then 1.9 cm in roughly 3 days. Progesterone was originally prescribed but our second opinion doctor (who specialized in cerclages) immediately scheduled the surgery for the next day.

Originally I wondered if he was simply a guy with a hammer who thought everything was a nail (such is his reputation) but during the surgery it was determined she had no measurement left and was 2cm dilated. So the cerclage was absolutely the right move - in fact after the procedure (modified McDonald technique) her cervix was restored to 3.8cm.

We all thought the worst was over - then her water broke that night. We called the charge nurse but it wasn't a lot of fluid so she did not believe the water had broken, and could have been discharge from irritation from the surgical stitches. We went in the morning just to be sure - and it turned out it was in-fact amniotic fluid.

So now we are in this incredibly surreal situation, where we haven't reached the hospital's viability of life (24 weeks - which will be 9/2) - and based on the statistics we feel (strangely) comfortable with this.

The hospital has begun the antibiotic protocol developed by Roberto Romero's group at the NICHD Perinatology Research Branch in Detroit, working with Bo Hyun Yoon in Seoul.

Blood testing did show she was low on TSH (Thyroid hormone) and Vitamin D, so she is receiving that now. She was also recommended to drink a gallon of water a day, take 100 grams of protein (in addition to her normal intake) a day, and 15mg of Methyl Folate. She also got her first steroid shot today in preparation for crossing the 24 week mark on Wednesday to help develop our daughter's lungs if she does come early.

My wife has not been put on bed rest. Based on all of the case studies I've read so far, I can't fault any of the actions the doctor is taking - though we are also looking into certain probiotics that have been used in clinical trials to increase latency time.

Prior to pPROM, our daughter's lungs were developing well, and she is in the 50 percentile for size. Thanks for listening to my story (for now) - I hope I'll have many posts in this sub-reddit to come. If you have any advice or similar experiences - I would love to hear them.

I know some women have pPROM'd at week 17 and made it to week 32+. Our doctor had two that pPROM'd right around 23 and make it to week 31, but I also know statistically that those are outliers. The good news is there is no sign of infection and so far no contractions.

how do doctors take 25weekers off jet ventilator and put them on conventional to see how they do ?

I’m 4mo PP and my son is still in NICU. I’ve always been an under supplier but was getting 500-600mL/day until last month, then my supply dropped to around 400/day and now I’m lucky to get 6-7oz/day. I’m feeling disheartened bc pumping for 20-25 mins and only getting an ounce is tough, but I feel so so guilty for thinking about stopping pumping. My son’s formula is half my breastmilk and half formula for a higher calorie content so he’s already getting some formula. I guess I’m wondering if I’m a bad mom for only pumping for 4 months. Or if I’m a bad mom for stopping?

\i accidentally deleted my recent post* wanted to hear more good vibes sorry*

I honestly don’t know how to process everything that has happened.

My wife had already been admitted to the hospital for four days. While she was there, we were video calling each other when, without warning, I heard her screaming and desperately calling for the nurses. Hearing that through the phone while being unable to help her was one of the most terrifying moments of my life.

I immediately rushed to the hospital. During the entire journey, my mind was filled with fear, and I kept imagining the worst possible outcome.

Our baby was delivered at only 25 weeks, weighing around 800 grams.

Our baby looks okay for now, and I am incredibly grateful for that, but seeing such a tiny body inside an incubator, surrounded by tubes, wires, monitors, and machines providing support is heartbreaking. I know those machines are there to help our baby breathe, grow, and become stronger, but as a parent, it is still terrifying to see.

Everything happened so quickly. One moment, my wife and I were simply talking through a video call. The next moment, our baby was suddenly here, far earlier than we ever expected.

My wife has been unbelievably strong through all of this. I am proud of her beyond words, but I am also scared. I’m scared about our baby’s development, possible complications, and the long journey ahead in the NICU. I’m trying to remain strong for both my wife and our baby, but inside, I feel overwhelmed, helpless, hopeful, grateful, and terrified all at the same time.

Right now, we are taking things one hour and one day at a time. We are celebrating every stable heartbeat, every small improvement, and every bit of good news the doctors give us.

If anyone here has had a baby born at 25 weeks, or has experienced a similar NICU journey, please share your story. How is your child doing now? What helped you survive the fear and uncertainty?

We could really use some prayers, good vibes, encouragement, and hopeful stories right now. Our little baby has already shown us how strong a tiny human can be, and we are holding on to every bit of hope we have.

So we have a lovely 18M baby who was lucky to be recovered and discharged only 4 months old

They've been doing amazingly until this weekend where they've been vomiting every meal offered. In hand with explosively wet stools and excruciatingly dry ones.

They've had issues passing stools since 6mo / solids introduced and never been medically treated for it properly.

Despite 2 A&E visits for these problems in the past 96 hours, we've been sent home both times with no notes apart from to increase laxatives.

It has taken us hours to be seen by a specialist, which was a service promised upon her discharge.

We are now visiting again tomorrow to try to resolve this, with the hope that as the bank holiday is over, the relevant staff will actually be available.

It feels like we're going in circles when we visit A&E, nobody treats their condition seriously or looks for / understands the risks associated.

When did your preemie start solids? My baby born 31 weeks is going to be 8 months at the end of September, 6 months adjusted. They have good head control but still can’t sit unassisted. Did you wait until your preemie could sit unassisted? Were they able to at 6 months adjusted?

Hi everyone! Mom of a little heart warrior here and looking for some suggestions & experience! My little girl had a VSD repair at 8.5 weeks old. She was born at 37 weeks at only 4lbs due to iugr. Being so small + the VSD made gaining weight and bottle feeds very difficult so an NG was placed. She was hospitalized for her first 2.5 months of life. She made it to 6 lbs in hospital with fortification of my breast milk - allowing her to finally get her repair.

We are home now and she is thriving at 7 months! However, we still have the NG tube and working on bottle feeds. She takes anywhere from 40-100 mls orally and the rest is through the tube.

Post repair we tried just breastmilk without fortification and she gained; however, in recent weeks she had fallen slightly behind..making fortification necessary again. We started on Neocate because in the hospital that’s what we used (she does not have an allergy but had horrific reflux and tolerated this the best).

The problem is that she won’t take the bottle with fortifier. Refusing it and taking 10 mls (max). To test the theory of it being the fortifier, we gave her a bottle with just my breastmilk and she took 70 mls. Ugh!

In the background, my supply is dwindling and it is more difficult to keep up with her necessary volume. I know that switching over completely to a formula is on the horizon.

All this to be said, does anyone have experience with a good formula they used for fortification of breast milk that their baby actually liked? Specifically one that was good for sensitive tummies + reflux and well tolerated? Or just tips to convert?

Thank you all so much! Any insight is so so helpful!

I’m currently about 6.5 months postpartum. My son was born at 34+5 after unexplained PPROM and spent 11 days in the NICU. I recently found out I may be pregnant again. My first blood hCG was only 7, so it’s extremely early and I’m waiting for a repeat test.

I’m honestly terrified about the short interval between pregnancies, especially because of my history of PPROM and preterm delivery. I know close spacing can increase certain risks, and I keep worrying that my body hasn’t had enough time to recover.

Has anyone become pregnant around 6–7 months after a preterm birth or PPROM? How did your next pregnancy go? Did you see an MFM specialist, receive progesterone or cervical-length monitoring, or have any other precautions? I’d especially appreciate honest experiences—both positive and difficult ones. I’m not looking for medical advice, just hoping to hear from people who have been in a similar situation.

First time mom, My baby boy was born early at 34w5d and spent only 4 days in the NICU for feeding. He’s been taking 50ml of formula only, for a while now. Should he be taking more at his age now ? (8 weeks actual, 3 weeks adjusted) he weighs about 8lbs. Whenever we try to up the amount I find he spits up more but I can’t tell if it’s from the amount or because he’s just a very gassy baby.

Thanks in advance!

My twins were born at 32+4 weeks with severe IUGR, weighing 1,290 g and 1,490 g. They spent about 3 weeks in the NICU and are now 2.5 months old and getting close to 4 kg each.

Since discharge, we’ve been feeding them Good Start Stage 1 prepared to 24 kcal/oz. I recently noticed that their discharge paperwork specifically says to continue the 24 kcal recipe until they reach 4 kg.

Since they’re getting close to that milestone, I’m thinking about switching them to Enfamil EnfaCare prepared at the regular manufacturer’s concentration, which would be 22 kcal/oz. On average, they currently take around 85 mL per feed, 7 times a day. They usually have a longer stretch overnight, so we don’t wake them between roughly midnight and 5 a.m.

Twin B also has quite a bit of spit-up and gas issues, but she’s been ramming through it like a champ and continuing to feed and gain weight.

Of course, we’ll check with their pediatrician before making the switch, but I’m curious about other parents’ experiences. Did anyone transition their preemie/IUGR baby from 24 kcal to 22 kcal once they reached around 4 kg? Did their weight gain continue at a similar rate, or did you notice it slow down or become stagnant after reducing the calorie concentration?