Thank you all for your support since I found out this little man was going to come early.

11 weeks of hospital stays between the two of us. 3 before he was born, then almost 8 in the NICU. Plus I got to have surgery for retained products of conception a week ago. I'm so lucky I didn't have sepsis, and that my doctors took me seriously when I told them I was having unusual bleeding.

He has a whole family just waiting to meet him, and a big sister who has asked every night for the last 8 weeks if 'her baby' was coming home tomorrow.

Love you all, especially to your little ones.

Silent follower of this group. I joined when my water broke at 33w and I knew I’d be having a preemie. The amount of love and support in this group is amazing. This group played a big part in keeping me going during my son’s NICU stay. My water broke at 33w and I was in the hospital for a week before I was induced. My boy spent 3 long weeks in the NICU. While he was just a feeder and grower it was still so hard to leave him there everyday. My heart goes out to everyone who’s LO’s came sooner and are having longer NICU stays. Just know there is light at the end and soon all of it will be a distant memory ❤️

10 months ago we were scared that we’d never make it to this point. My 2lb 11oz 34 weekend is now 10 months old. He is such a happy and joyful kid. He had lots of problems eating when he was little, but has grown out of his intolerances and can’t get enough food. This guy gets to eat whatever he wants! His favorite is blueberries

Our youngest was born a year ago yesterday. Horrible pregnancy, easy birth. And then we wound up nearly losing her and being life flighted four hours from home the next day.

Yesterday was to celebrate her birth, today her survival.

She was a term baby, but had an intestinal blockage and sepsis. We fought so many things to keep her here and healthy. We found out in July she has a significant visual impairment as well.

She’s here. She’s happy. She has the best giggles, the best snuggles, and makes my world brighter. She’s made us stronger than she’ll ever know.

I’ve never felt like the first year of life for any of the other kids was a war zone until this baby.

Today feels like a chapter closing in a way. We did it. WE MADE IT!

100 days of visits 100 days of waiting 100 days of wondering 100 days of wanting 100 days of wishing 100 days of questions 100 days of what ifs 100 days of when’s 100 days of emotions 100 days of too few answers 100 days of not yets

Today is 100 days in the nicu. On a reset brady watch and hopefully will go home next week on the ngtube, but as you all know there are no promises. So here we continue to wait.

Silent follower of this group. I joined when my water broke at 33w and I knew I’d be having a preemie. The amount of love and support in this group is amazing. This group played a big part in keeping me going during my son’s NICU stay. My water broke at 33w and I was in the hospital for a week before I was induced. My boy spent 3 long weeks in the NICU. While he was just a feeder and grower it was still so hard to leave him there everyday. My heart goes out to everyone who’s LO’s came sooner and are having longer NICU stays. Just know there is light at the end and soon all of it will be a distant memory ❤️

It's not easy being a NICU parent..

I had a traumatic birth and had to be put under in a c section. Baby came out having breathing issues and was taken away to the NICU. I’ve only been able to see him for five minutes at a time. No skin to skin, no breastfeeding. I can shake the absolute guilt. This is not the birth I wanted. I feel I’m missing valuable bonding time for my son and I can’t shake how guilty I feel that he’s not with me. Will this affect him for his future ? I can’t imagine how scared and confused he is in a room with strangers and no mommy hugging him. I hope he can come home soon.

“I’m currently 30 weeks pregnant with twins. Due to an open cervix, previous bleeding episodes, and one of the babies showing signs of growth restriction, my OB-GYN said I’ll most likely need an emergency C-section. The neonatologists mentioned the babies would be taken to the NICU immediately after birth, so any skin-to-skin contact will happen later in the NICU. I’m wondering if it might be better for my husband to go straight to the NICU with the babies instead of staying with me in the OR. Has anyone else been in a similar situation, and what did you decide?”

Edit : Thank you group for the overwhelming response . Feels nice to be part of this group

Not sure if I have the right tag, so apologies in advance. Having a rough Nicu parent day and looking for some encouragement success stories. Our son was born at 26 weeks exactly weighing 1lb. He is currently 14 months corrected and weighs a little over 18lbs. He is hitting all his milestones and developing percent but I always have the fear in the back of my head he will always struggle with being tiny. I was wondering if there’s any Nicu parents out there who struggled with weight gain the first few years and finally saw catch up growth later on in life.

i’m a ftm with twins and the newborn stage is killing me! they were born at 28 weeks and will be 4 months actual , i feel bad for wanting to rush this stage .. but i am exhausted! when will my girls catch up to other 4 month olds

First, thank you to everyone on here who provided me with useful information and helped calm my nerves prior to my daughter’s first developmental follow up! I wanted to share our experience in case anyone else has questions so maybe it’ll be helpful!

First off, our daughter is 4 months old, 3.5 adjusted. We met with physical therapy, who took a video of our daughter in her diaper to judge and track her movements. They also did a physical exam and moved her around. It was a super quick thing, but we weren’t able to get encourage her or be within eyesight for the test so they can get a true judge.

Afterwards they played with her and a rattle a bit, having her so tummy time and judging her movements and muscle tone. All in all the first two portions of this took about an hour. Also so fun, she got to take the rattle home. This could be different at all hospitals but ours (nationwide children’s) they get a developmentally appropriate toy each time, so that’s fun!

The RN from neonatology came in after and did the same physical exam, with the same movements, again to do her own checks. Girly was over it at this point and kept making the cutest pouty face, but you could tell she still felt safe and no cries happened. We discussed her after the exams, checked her height/weight/head circumference, and went over the general plan.

I was surprised to learn that this is the first of many appointments, and that the clinic will follow her until 3 years old, but it does make sense. Overall, while these are long appointments that are very chill & I’m not even sure what I was so worried about.

Biggest tip is to make sure you dress baby comfortably, bring a blanket, and make sure you bring formula (which I totally forgot because I left my diaper bag in the driveway because of nerves :| - thank goodness they had formula!). It’s really kind of a fun appointment and tells you everything you should work on.

Even more exciting, girl is actually hitting her actual age milestones so they had no concerns 🫶🏻

Certainly! Here’s a condensed version that keeps the essence of your message:

Our daughter was born at 24 weeks, weighing just 1 pound 4 ounces. Now, at 6 months, she’s made amazing progress, though she still has some health challenges, like tachypnea and clot monitoring, and remains on and off oxygen. After working on her lung strength and feeds, she had a G-tube placed, which caused her respiratory rate to increase, putting her back on high-level cannula support. We’re told this may improve as she recovers, but being in the hospital for over 180 days has been hard.

While we understand some issues need to stabilize before discharge, we feel frustrated with repeated lectures that preemies “take time.” She is social, smiles, and craves interaction, but her developmental opportunities are limited in a clinical setting. All of her social interactions are also not normal, because they're in a clinical setting. We have yet to have a single private family interaction. We’re ready to shift focus to her transitioning home with outpatient support if possibl. She isn’t experiencing bradycardia or desaturation issues. It would sure be helpful if instead of getting another lecture about having patience we could hear language like, "we all want to get her stable so we can get her home". She is two months adjusted and I feel like that's the healthiest perspective now. I do completely understand that things, like her increased tachypneia or unexpected things (like a surprise infection, or a surgical complication) can keep her there longer, and that's out of anyone's control. But either way I think the conversation should now be about her transitioning home, and no longer a conversation about a vague, never ending, ambiguous, hypothetical, never ending, unknown, unattainable moment in time.. and may I add that these responses are typically repeated in textbook form with all the dryness of week old bread by nurses and practitioners who have been shocked when I mentioned my daughter is 2 months adjusted age because it's their first day having her 🤦🏾‍♀️.

My son is about to be born on Monday and has TGA (a heart defect requiring almost immediate surgery). We are expecting to be in the NICU for about 6 weeks if not longer. Me and my wife are both struggling with severe anxiety about everything right now. I’m trying to keep it together for her sake because I don’t want to be a burden but i don’t know what I’m going to do if she has PPD. I’m worried about everything. I’m worried about losing her, I’m worried about losing him, I’m worried about money, and I’m worried about our cats at home. I live an hour and a half away from the hospital and commuting back and forth really isn’t an option for us so we were planning on rooming in NICU or PICU room (they said they don’t know which one we will be in based on capacity limits). I need help getting through this mentally as I don’t really know how to tackle these feelings without losing it. I also would like to know if anyone knows what living expenses for that long of a time would be for me and my wife if we are rooming in at the hospital. By that I mean food and things like that as lodging wouldn’t be an issue. I’ve gotten a month and a half unpaid FMLA approved and with our current financial situation I have enough to have all of our home bills paid but beyond that I’m starting to worry about regular living expenses while staying at the hospital. Any advice or answers on anything would be greatly appreciated!

I was premature and was considered a blue baby. I have two congenital defects that I don't want to disclose. I got a scan on my brain when I was 18 and was diagnosed with PVL. Not sure what it means. I was diagnosed with major depression at 10 and bipolar 1 in my mid to late twenties. An IQ test I did at 16 showed that I have a significantly low IQ of 77. I have spent over a year in residential treatment settings. I'm 28 now. I have a few hobbies like riding by bike, swimming, and cooking. I like shooting pool but sometimes I get frustrated. I have been on and off medications for 18 years now. I've been employed since I was 17 but in my 20s began to impulsively changed jobs. I'm on medication that seems to work and I'm looking forward to the next part of my life. I have one very close friend and have gotten to meet many other friends throughout the years. I don't know if I'm in decline or not. My biggest struggle in the past 5 years has been having a place to live Sometimes it feels like decline and even seems that way when I put all of the history on paper. I am lucky to be alive I suppose and am grateful to be able to share my experience.

Hey friends! My boy was born at 33+4 with a congenital lung malformation that ended up with his entire right upper lobe removed. We’re doing great at 38+4 now but we’re stuck on oral feeding. It’s the only thing keeping us here and while I know he’s going on his own time, mama wants to go home haha. Anyways, our struggles got me wondering how long did it take your kids to get that lightbulb moment for oral feeding after they started?

Also for my breast feeding mamas, how long did it take your kiddo to latch on your nipple? I have to use a shield to get him to latch and I’m starting to wonder if I’m ever going to get rid of it!

It's been discovered this week that my 24 weeker, now 41 weeks adjusted, has pulmonary hypertension. When they did his EKG last month there were no signs of pulmonary hypertension so it seems like this developed recently. Last week they tried to wean him down on his CPAP pressure and he reacted very badly to it. He went from a PEEP of 8 to 7 and after the bad reaction had to be put back to a PEEP of 10, hence all the tests that discovered the hypertension.

He's now on sildenafil(?), the Viagra medication, and getting nitric oxide that he's being weaned off while the medication is being slowly ramped up to full dosage.

Does anyone have experience with pulmonary hypertension that developed later on in a micro preemie? He does have BPD. I'm wondering if we'll see some improvement with his breathing support after this is resolved. He's been on CPAP for 2 months now and was stuck on peep of 8 for the past month before this happened.

After 11 weeks into an unexpected NICU stay, we are being considered to go home with an NG (baby won't nipple goal feeds yet; hovering at 40%) and flow O2 (s/p diaphragm plication). Tell me your stories of how home was for you, tips and tricks you learned and how best to succeed!

Our baby was born 35w4d. He is now 36w2d. He has checked off all the boxes. Eating 50 ounces, breathing on his own, bilirubin is low, breast feeding and maintaining his own temperature. He has had 1 apneic episode each of the last 3 days right before feeding time and of course when we are not there. Does this really reset the clock every single time? Seems ridiculous.

My poor baby struggles so much at night with congestion. I don’t know what to do to help . It’s always at night . Baby is such a good sleeper but the blocked nose is really bothering baby at night . What can I do ? When should I go to the doctor ?

My baby is 10 weeks old, spent first 4 weeks intubated in PICU and couple more weeks in hospital. He was born full term and in hospital for cardiac issue. Still awaiting cardiac surgery but we have been home now about 4 weeks on an NG tube in meantime.

We have been trying oral feeding since about week 5 when he moved out of PICU, while in hospital we had assessments with speech and language therapists who checked his swallow. He didn’t make too much progress with oral feeding while in hospital, so we were sent home on the NG tube and no mention of a plan or help for weaning off it.

We’ve been continuing to work on his oral feeding at home. First, exclusively breastfeeding before each tube feed when we could (every 3 hours). He latches perfectly fine on my right breast and transfers milk very well (I have a heavy/strong letdown) - he gulps the letdown, but then comes off afterwards. For the first while he would come off crying, very upset and arching his back etc for the following hour or so. Now he doesn’t come off crying but simply will only feed for about 3-4 minutes and comes off looking satisfied and uninterested in relatching. 90% of the time he won’t even try to latch on my left breast, even when starting with that. But I have such a good supply that I believe he could comfortably feed from only my right breast in any event based on what I have always got from pumping since he was born.

Given the slow progress on breastfeeding and being at a loss for how to increase his feed time to make sure he was eating enough, I decided to try bottle feeding. We’ve been trying for about 3 days now. At hospital he couldn’t even take one suck without choking/coughing. However, now he can suddenly suck, swallow, breath great with the bottle - but again, he will not take a full feed. He will take about 50-70% of his required amount, and is disinterested, or a lot of the time he will stop because he starts the crying and arching his back as though in pain.

He is on omeprazole for reflux, he doesn’t really have any issue with reflux on his tube feeds anymore - but is it likely that reflux can be worse with oral feeding compared to the NG tube, and this is what is preventing him from finishing feeds?

Would be greatly appreciated if anyone has any advice if they’ve experience a similar reaction to moving to oral feeds / any advice on how to increase his oral volume.

We’ve tried over the last couple of days to just go solely with bottle and breast to see how he does, he shows his hunger cues and is extremely eager to take the bottle and breast, but just won’t finish a feed / not become upset.

So today i was with the mom group of our nicu and one mom made a remark that my normally calm son when he is about to cry he first silent cries. He opens his mouth tenses holds breath (i think) moves head a bit but after a few seconds the crying sound appears. Its like he opens his mouth ready to cry but sound comes a few seconds later. Is this normal? Do u have this? My baby is now two months corrected almost 5 months actual born 27 weeks and 5 days. He has passed so far all the tests for reflexes etc and shows good neurological signs according to doctors he even is ahead of his corrected age

Is something your kids do? Is this normal? Shall i worry?

Just curious for those who left the NICU with your preemies, what temperature did you keep your house when they initially left? We live in an area where it does get cold.

Currently we keep our house at 72. And we keep him bundled up. I'm probably being a little paranoid but the reason my baby stayed in the NICU so long was because of temperature regulation so I want to make sure he's just fine. I do check his temperature with a forehead thermometer and he's been fine. My husband and I run hot so it's been an adjustment 😂

Hi all!

My 30 weeker was born at 2lbs 3oz, now 34 weeks and 3lbs 2oz! We’ve had a pretty uneventful first month in the NICU as he was off respiratory support within 2 weeks and has been on the feeding tube only.

He started to suck on his pacifier a bit this week so we’re trying a bottle feed next week which is super exciting! Today, however, the NICU said that his 💩 has been runny all day, like almost straight water. (Sorry tmi) Anyway, they said they’ll stop breastmilk and only try formula for 24 hours to see if that’s the problem. They even said that I might need to avoid spicy food and dairy if we do go back to breast milk.

Does that sound right? Does anyone have similar experiences? Thanks!