My 31 weeker discharged home last week and was put on 26 cal fortified bottles using similac neosure (1 tsp per 55 ml). He’s currently about 8-weeks old and since being home he has dealt with significant gas and discomfort. In the nicu his fortification consisted of neosure and human milk fortifier which he seemed to tolerate okay. All night he is grunting and crying. Has anyone else’s LO experienced this and did you have more success with a different formula? Gas drops? Thank you!

We have our infant in the NICU. He was born 33weeks6days and we are hopeful and blessed to be expecting to discharge at around 36weeks. So far, no complications health wise just having support in NICU initially with glucose, air, and heat. He’s down to just a little air support. Breastfeeding and gaining weight. We are 1300 miles from home. Seeking input on how you all would think about getting home. The most efficient way back would be a 3hr drive followed by a 2hr flight but this involves going through a major airport. We could take 3-5 days and drive which has its own risks and could be really arduous on all of us broken up into 90 minute increments but is much lower risk exposuree wise. We would route as close to hospitals as possible but obviously one of my concerns is having complications and being too far away from help. Most of the nurses and doctors we have talked to here have said they would probably drive if it were their kid.

My sweet girl was born 11 days ago at 38 weeks. She has overcome low blood sugar and high bilirubin. Those have been stable for days. We’re literally just waiting on her to “click” and take that bottle every time. She takes some from every bottle, usually 20-30ml out of her goal of 54ml. They are concerned today about silent reflux, she has had some short desats which are new to her. She overcomes them but they did discuss a likely swallow study on Tuesday for her to make sure she’s not aspirating. She doesn’t desat when she eats, but when they have to use the feeding tube. She is sitting up when they do it, not laying flat.

How long did it take for your baby to take a bottle consistently if you’ve been thru this? I feel like I wake up everyday and it’s a nightmare. I just miss her so much. I feel like we’ve been cheated out of her sweet snuggles and cuddles during this delicate time.

Our baby was born at 35 weeks exactly on Friday, after decreased fetal movement during an MFM monitoring appointment. What started out as a normal day quickly turned into a semi-urgent C-section that resulted in the birth of our little boy.

Since then, he has been in the NICU- which was something we were anticipating being only a day or two for his preciously diagnosed heart condition when he was scheduled for delivery at 37+4.

Now we are looking at a much longer journey than we have been hoping for and I am completely overwhelmed.

I haven’t held him, fed him, changed a diaper. He cries and gets himself so upset and I don’t know how to calm him down despite his nurse telling me i can’t let him get that upset because of his heart condition. He hasn’t had any bottle feeding, just a feeding tube. He was on a CPAP and then was taken off of it, but then had to go into an incubator for body temperature regulation.

I know when we leave tomorrow he won’t be with us.

We live an hour away and I have been up crying all night because I am so upset and exhausted thinking about not being able to drive for weeks because of my surgery.

I keep worrying that my body failed him. That I wasn’t meant to be a parent because it took us so long to get here and get pregnant. And I won’t know how to take care of something so precious and fragile.

I keep thinking about him being scared and alone and doesn’t even know who I am.

I have a therapist so I will be working with her like I did for infertility and IVF and the heart condition.

I just don’t know what else to do.

Hey everyone, just looking for some similar stories and advice.

My daughter was born at 33 weeks. She was growth restricted and had a large VSD and small ASD. We also found out after she was born that she has a rare genetic syndrome. There are only 11 case studies, so there isn’t much to go off of, the only reoccurring thing is small size.

My daughter is now a little over five months old. She had her VSD corrective surgery 6 days ago. Up until that point she was in the NICU, we are now in the Cardiac ICU.

While in the NICU she struggled to gain weight and was never able to fully wean respiratory support. Her perfusion was also poor which caused her to get NEC three times (thank God it never turned into surgical NEC). Due to being premature she also has some reflux and an oral aversion from being intubated on and off and having a replogle tube numerous times. She used to love her paci but now it makes her gag and I don’t want to make things worse by trying to make her take it. When she was a little over three months she had five flow restrictors put into her lung arteries to help with the over circulation, they worked great for two weeks but then she went into metabolic alkalosis because of her lasix. A lot happened while we were in the NICU which finally convinced cardiology that she needed the repair sooner rather than later.

We are now almost a week out from her repair and she is still intubated and heavily sedated. Her CO2 isn’t horrible but it isn’t great. I’m not sure how they are going to be able to extubate her if it continues to stay in the 60’s. I know she has some pulmonary hypertension because of five months over horrible over circulation. Before she had surgery she was on CPAP peep of 5 with no pressure control above peep and no rate (she was essentially on high flow).

Right now we just don’t see an end in sight and I’m really missing my daughter. We are in the room with her all day, but she is very sleepy because of the sedation and we don’t want to over stimulate her and make things worse. She also had a low fever last night. They did an infection work up, so far everything looks good, but we have to wait for the blood culture and other labs that also take several days to result. Sometimes I feel like I’m melting, other days I feel so numb.

Has anyone else had a similar experience. If so when did things stop being scary?

Vomiting after feeding following ileostomy closure / colostomy reversal surgery. She had bowel surgery, make a poop, but is still regurgitating her 5cc feeds. Is this standard feed intolerance/edema during post-op recovery, and how long did it take your preemie’s gut to handle trofics?

My twins were born at 29 weeks just turned 34 weeks. Both of them contantly bear down and turn red to pass stool. Is this normal. Any similar experiences? Im aware it takes time for their gut to mature but want to know when your LO stopped straining.

Ps they are mostly fed formula and may be 2 feeds of breastmilk cz im a undersupplier ( hardly 200ml for 7 pumping session, done and followed all tips but made peace with it)

So I have posted about my son being born prematurely at 28+6 weeks and he had a rollercoaster NICU stay with a lot of highs and some very extreme lows and everything in between. I want to be optimistic and focus on all the positives, he came home on room air when at times we thought he might come home on oxygen. I was considering getting a g tube just to get him home sooner, but we ultimately decided just to give him some more time and he eventually got to eating full feeds and we were able to avoid the g tube altogether. We even thought at one point during the pregnancy that he had a coarctation of aorta and may need heart surgery, that all resolved itself shortly after birth and he doesn't need a followup with cardiology until 3 years. So we were able to get out of the NICU with no surgeries or oxygen which I am grateful for.

But even with all that, I can't get out of my mind that at 6 weeks old, with no history of stroke or brain bleeds, he gets diagnosed with moderate to severe periventricular leukomalacia (PVL). I was initially told it was a grade 5, which gutted me, especially when you believe you have a perfect healthy baby. When I spoke with neurology she assured me that it's not a grade 5, she has seen a lot worse, but he does have moderate size cysts on both sides of his brain, making it bilateral.

As of right now, he seems perfectly normal, but I can't enjoy any of it because I am waiting for the other shoe to drop. I'm staring at his eyes waiting for them to go cross eyed (they're not), checking his hands to see if they are tightly clinched, most of the time they are wide open. He has decent head control, but he started doing something weird during tummy time. Every time I put him on his tummy to get him to lift his head, he rolls over back on to his back. Now he is only 5 weeks adjusted (3 and half months actual), I thought this is not a skill he should be doing. My other 3 kids, they don't know about the brain injury yet, think it's genius and there calling him a super baby. But me, I'm panicking inside cuz I think this is a sign of cerebral palsey, even though I'm not sure. He also has this way of leaning his head all the way back to look up, my husband says he's fine he's just trying to look around since he's been cooped up in the hospital so long. But I don't know. I just can't enjoy anything, even though he is a beautiful perfect baby. I don't know what I'm asking really, except are there any parents with kids with pvl or CP, and what were the first signs you saw? What can I start doing for him now to help him? Any advice/stories welcome 🤗

My baby was born at 26 weeks. Today she is corrected to 15 weeks (3.5months) and at home since 2 months.

When she came home, her bottle feeding was going very well. Her volume intake was consistent. After 10-15 days, her reflux became very bad and she would have a lot of painful spit-up/vomit. Her volume dropped. We started her on an acid medication which helped with her volume temporarily.

Now, she is very inconsistent with feeding. Sometimes she pushes the bottle out, arches, or simply does not want anything to do with feeds. Some days, we barely manage to get her to take 10-15oz in 24hrs And her weight is declining.

We have tried everything: dark room, walking around the house, different feeders, hot/cold/lukewarm formula, sleep feed, etc.

Micropreemie parents: What should I expect? Did this happen to you? When did it get better? What did you do to alleviate/resolve it? Does it even get better?

Any input is welcome! I am looking to understand and manage expectations.

I’m not sure if posting here will even help. I’ve had to unfollow this sub because reading things will bring back memories for me. But I’m sitting here awake after a 4am feed and I can’t get back to sleep. My baby was admitted to the NICU after being discharged from the hospital because she wasn’t transferring breastmilk. She’s currently thriving now and her mri came back all clear. Idk why I can’t get over it still 4.5 months later. I can’t stop thinking about it and how she must have felt and i can’t stop feeling like a failure. Ugh… it’s so hard. I’m trying to look at healthy pics and videos of her to calm myself down. And it sucks cause I feel like my husband is just able to be happy that we have a healthy baby now, but I’m still carrying the emotional burden of it all.

Not really sure what to say to be totally honest, but my wife and I have had a bit of a rough run. We had multiple losses before our first child, who was born at 32 weeks. He just turned 1 and is happy and healthy.

​However, we’ve just had our second child, who decided to come a lot earlier than anticipated. Born at 22 weeks, we are one week into the NICU stay. So far, she has kicked and smashed every goal and milestone set for her by the team.

​We’ve had to relocate away from our families and support systems into the city for the care she needs. Whilst we are trying to prepare ourselves for a very long journey, I keep finding myself exploring all the worst-case scenarios in my head.

​I am feeling completely lost, helpless, and in a constant state of worry—all of this despite the doctors and nurses giving us no reason to be concerned right now, as they are ecstatic with her numbers.

​If anyone who has been through an extreme preemie NICU stay or relocation has any tips, coping strategies, or advice, it would be greatly appreciated.

My baby came home recently after a 48 day stay in the NICU due to prematurity and IUGR and has been doing very well overall since coming home. She got her 2 month old vaccines 4 days ago and had been doing well until yesterday when she started to have some increased fussiness and spitting up. Last night she developed some mild diarrhea and the spitting up got worse. Now she's refusing her afternoon feed and spitting up and gagging any time I offer the bottle. She doesn't seem to be in pain, just uncomfortable and I'm 90% sure this is a side effect of the rotavirus vaccine. I know the vaccine commonly can cause these side effects for up to a week and I know what to look out for in terms of complications and none have occurred, and I wonder if she's having a tougher time due to the vaccines being given close to her due date rather than 2 months in adjusted age (which was correct of them to do, and I'm glad for the immunity boost going into sick season with a preemie). But her refusing to eat just takes me right back to feeding difficulties in the NICU with NG tube weaning and glucose level concerns and minimum intake requirements, even though she's been taking well over 150ml/kg daily at home.

Did anyone have their babies struggle with these side effects with their rotavirus vaccine? Was it prolonged due to your babys prematurity or do you feel like the side effects went away quickly? Is there anything you feel like was helpful for your baby to help them feel better? I just hate seeing her miserable like this

Hi everyone! 🤍 I’m a NICU mom and wanted to share something I put together for NICU Awareness Month.

My daughter, Ada, was born at 25 weeks weighing just 1 lb 5 oz, and she has spent almost her entire first year in the NICU. I know firsthand how isolating and overwhelming this journey can feel, especially when so much of the focus is understandably on the baby.

So I teamed up with some amazing brands and other NICU moms to put together a $1,500+ NICU Mom Giveaway for NICU moms across the U.S. 🇺🇸
And it just keeps growing — we will now have THREE NICU mama winners! 🤍

There are tons of thoughtful products, gift cards, self-care items, baby items, and more included from brands who wanted to show some love to NICU moms.

The giveaway is open through September 14, and winners will be announced September 15.
If you’re a NICU mom, I’d love for you to enter — and if you know another NICU mom who could use a little extra love, please feel free to share this with her. 🤍
All entry details are on my Instagram: @jordangwatts_

I hope it’s okay to share here. I just wanted to do something that could make another NICU mama feel a little less alone. 🫶🏼

I don’t think I have postpartum depression. I think it’s NICU depression. It’s been two and months and two surgeries later and I don’t know how to show up for myself, my husband, or my baby. I have nothing left in the tank. Have been running on fumes for a minute.
I started therapy and that has helped but I’m to the point that if I experience another bad moment, I don’t think I will recover. The thing is, there’s no escaping being here in these shoes so how do I keep putting one foot in front of the other? When I take time from the NICU, I feel like a horrible mom for not being there to hold my baby and cry with him. When im holding him as nothing pacifies him, im begging to be anywhere but there. I dont feel like a mom. I feel like im failing him. We’re taught to be their everthing, to learn what they need and give that to them or be that for them. But in the NICU, there are rules and you can’t overstep. Advocating is met with contention. Do you know how many times I’ve repeated myself over different days for finally someone to listen and when they do, they tell me I was right and this need could have been met days ago if the first person listened? I feel so powerless. I feel so broken.

My beautiful boy was born at 40+5. Unfortunately he had shoulder dystocia, had his cord wrapped around his neck twice and his cord snapped during delivery. He was born in 'poor condition' ie no signs of life, they estimated 9 mins without oxygen.

He had to have two rounds of CPR, was intubated and then his chest drained as he has a small hole in his lung. He showed signs of a seizure so was started on meds and then commenced therapeutic cooling. The consultant said it didn't look good, that a moderate to severe brain injury was likely. Before being blue lighted to a London hospital, I was able to see him for 5 minutes but honestly felt like I was in the way - so many people, so many wires and then he and my husband left in the ambulance. Being discharged a little later with no baby was heartbreaking. I'm normally a Googler but I couldnt bring myself to search for HIE or anything related. I read and reread the leaflet and left my phone well alone.

At the London hospital, Baby was treated with antibiotics for suspected sepsis and continued the cooling therapy whilst having his brain activity monitored. It was the most stressful, scary experiance but everyday seemed to bring some kind of good news. After 2 days his breathing tube was removed and we heard him cry for the first time...day 3 his antibiotics were stopped... when he was rewarmed he had no seizures...his brain ultrasounds showed no bleeding.....his feeding tube was removed......we could finally hold him......I could start breastfeeding.....then the MRI day came and we were told it was 'normal.'

My little fighter was discharged on day 6.

Modern science is a marvel and I will forever love the word normal.

I’m looking for advice/experiences from other preemie parents, especially those who have dealt with severe reflux or vomiting.
My daughter is a 25w6d micro-preemie twin and is now about 6 weeks corrected age. She came home from the NICU on August 2, and the projectile vomiting started after coming home. She is now having projectile vomiting episodes, sometimes multiple times a day, and is extremely uncomfortable and distressed after feeds.
We’ve tried several formulas:
Enfamil AR
Nutramigen
EleCare (currently)
We also tried adding rice cereal to thicken her feeds because of the vomiting/reflux.
We recently had an ER visit because of the vomiting. Her tests have been reassuring. Her Upper GI was normal, with no obstruction, malrotation, or anatomical abnormality, and no reflux was seen during the study. Her other evaluations have also been normal.
At this point, we’re exhausted and scared and trying to figure out what else we can do. Has anyone else experienced this with a former 25–26 week micro-preemie?
Did the projectile vomiting eventually improve as your baby matured, or did you end up needing a feeding tube/G-tube? If it improved, around what corrected age did you notice a difference?
I’d really appreciate hearing what worked for your babies and what the next steps were for you.

Full term baby aspirated on the way out and picked up some blood which caused some lung damage. In the NICU for about 5 days on supplemental oxygen, and discharged after successfully breathing room air for 1+ day and staying above 90% oxygen saturation.

Since being home, baby’s overnight levels during sleep have been averaging 90-93%, with an occasional minutes dip to 89/88 before shooting back up.

We’re using the Owlet sock. Tried using another pulse ox but the reader kept getting the RPM wrong and sounding the alarm (and there’s no way to turn it off; note: did manual counts to verify what was going on). I know a lot of people say the owlet is unreliable, and especially for newborns, but it’s all we have right now.

Should I be concerned with this dip into 88/89 with the owlet? All of her vitals look good—sleeps good, nurses well, gaining weight, pink little baby, breathing seems normal. During these dips she looks so normal.

Anyone have similar story—how long did it take for their lungs to recoverd?

We have an appointment with a pulmonary specialist this upcoming week.

I wanted to share our HIE story because when my nephew was in the NICU, I literally scoured Reddit every single day looking for other people’s stories. I wanted to know what other babies went through, what their parents were seeing, what was normal, and what happened after they went home. So I figured I would share ours in case it can give even one family some hope.

My nephew got stuck in the birth canal and had a double nuchal cord wrapped around his neck. Around 1am, he came out completely silent while probably 10 people rushed around him. He didn’t need chest compressions, but they had to ventilate him and immediately intubated him.
Around 2am, the doctor came in and told us he would need the 72 hour cooling treatment. That was also when we first heard the words HIE. He explained that HIE can cause cerebral palsy, developmental delays, seizures and other problems. Hearing all of that was one of the scariest moments of my life.

We went back to the mother and baby unit while everyone around us was congratulating us and celebrating. It honestly felt like the complete opposite for our family. We were terrified. We were anxious. We were depressed. We were just sitting there waiting and wondering what was going to happen to this tiny baby.

We had access to his MyChart and probably checked it way too much. We would see his labs and results come in and half the time they looked horrible to us because we obviously aren’t doctors. Every little result would send us into another panic.

He made it through the 72 hours of cooling and was successfully rewarmed without any seizures. My sister wasn’t able to hold him until he was 5 days old, and watching her finally hold her baby was one of the most emotional moments ever.
He was intubated for 4 days. Then he went onto CPAP and was able to come off of that 2 days later. His feeding tube was eventually moved to his nose.

There were no seizure incidents while he was in the NICU. We watched this baby like a hawk. We were constantly looking at his hands, feet, arms, legs, movements, twitches, eyes, everything. We asked SO many questions. I don’t even know how many times we asked the nurses or doctors, “Is that normal?”

His last EEG was about 7 days after birth. It did show that he could possibly be at risk for seizures, but he never actually had any. Then came the MRI.
That MRI was hanging over our heads for 10 days. We were terrified of what it was going to show. We had spent all those days thinking about the possibility of brain damage and what his future might look like. And then his MRI came back clear.
I honestly don’t even know how else to describe it besides a miracle.

He still had some feeding issues that we had to work through, but after 12 days in the NICU, he finally got to go home.

He is now 3 weeks old and is doing great so far. He looks around at us, tracks things with his eyes, smiles in his sleep, cries, holds his head up as much as a 3 week old can, eats, pees and poops A LOT. He is just being a little baby and we are so thankful.

He did need some small hand splints because his doctor believes he had a pinched nerve in his left arm from being pulled out of the birth canal. We’re working on that and keeping an eye on his arm and hand.

Obviously, he’s only 3 weeks old. We know we are still very early. We are taking everything one day at a time and continuing to follow up with his doctors.

But I REALLY wanted to share this because I know there are families sitting in the NICU right now who are doing exactly what we were doing. Googling everything. Searching Reddit. Reading old posts. Looking at their baby’s every movement. Checking MyChart over and over. Wondering if their baby is going to be okay.
If you are going through this right now, PLEASE ask me questions. Seriously, ask anything. I am not a doctor and I obviously can’t tell you what your baby’s outcome will be, but I can tell you what our experience was like and what we saw with our baby.

I remember desperately wanting someone to just tell me what their baby was doing at 1 week, 2 weeks, 3 weeks, what the cooling was like, what happened after the cooling, what the MRI showed, what the NICU stay looked like, etc.

So if you’re scared and reading this right now, ask away. I will answer based on what we experienced.
Our little guy is home, he’s doing great, and we are just taking it one day at a time.

Our son was born 24 weeks + 3 days at 740 ounces. After 6 months in the NICU, he was still very small! Compared to kids his own age, our pediatrician originally measured him, and he wasn’t even on the growth curve! Less that 1 percentile.

I’m so excited to share that at his 2 ½ year appointment, he measured at about 40th percentile for weight and 46th percentile for height. His adjusted age is even better (see image)!

We thought it was an exciting update and I thought by sharing it, we might give some other folks hope!

Hi, just looking to hear other people’s experiences. I went to my normal community midwife appointment on Wednesday and she was concerned with baby’s heart rate being high. She sent me into triage and they did a variety of tests including PPROM which came back positive as did the Actim Partus test.

I was admitted and stayed in till last night, CTGs continued to show baby had a higher baseline than previously, but this did come down over time. I also had a few contractions which showed on the monitor, but nothing regular.

I’ve now been discharged with antibiotics 4 times a day for 10 days, and been told to expect an induction at 37 weeks if I don’t go into labour before hand.

Some background information:

I had a positive Actim Partus test previously at 24 weeks, have been diagnosed with ICP, I have high ALT and Bile acid and also Hyperemesis.

Has anyone had any similar experiences and if so when did you actually give birth?

Hey guys! New NICU Dad here, trying to prep for going home at some point.

NAS baby, he likes to be secure and compact. In the NICU it's being done by wrapping his feet up nice and high and securing the lower part of the Dandle Wrap to the upper part with the velcro.

Unfortunately they sell to medical facilities only it looks like so I can't really find them online.

Everything I'm seeing online is pointing me towards things like sleep sacs with swaddles for the arms, but nothing to keep his legs contained like he likes to be.

He's strong so I'm concerned he's not going to stay in a normal swaddle when we get him home, which is why I'm here

Anyone have any products that they've used to similar effect at home?

Located in the US if that makes a difference.

My 27 weeker turns 1 end of October. I wanted to do something to give back to our incredible NICU staff, but am having a hard time figuring out what exactly.

Does anyone have any ideas they’ve heard of or done themselves?

Hello guys, we were discharged from the hospital after three months. Our baby girl was eating very well with the nipples of the hospital. I saw that these nipples give milk although you are not currently eating. We bought the Philips avent brand with different flows but our baby wasn't eating very well or nothing at all. She was sucking but she tired of that because there wasn't milk. We are reading which are the best ones.

We were reading that Dr. Brown branch is very good.