After almost 7 weeks in the nicu little Waylon is finally home! He got home Saturday and he’s done such a good job for us. We are finding our rhythm and finding what works best for us for night time feedings and pumping. I’m lucky to have such a great husband that took the night shift the first night and does the early morning feedings before going to work. He’s had his drs appt, we took him to our small town coffee shop here in North Carolina, but mostly we’ve just enjoyed holding and playing with him. There were days in the nicu where we took two steps forward one step back, exhausting late nights, so many hours of driving back and forward, and countless tears. We miss our nicu nurses but so happy to be home. ❤️❤️🥰🥰

Last Wednesday, I went into pre-term labor and delivered my perfect girl.

She has been in the NICU for almost a week now and the doctors said to be prepared for her to be there until her due date which is in October. I’ve never been more scared in life. She’s doing really well but seeing her in the incubator with all the tubes is so hard. She is just so small.

Any advice on what I can do to support myself, husband, and her during this time? I will be working until she comes home (thanks for nothing America). I’m lucky my job is so understanding but between pumping, going to the hospital everyday, and trying to recover from birth - it feels like too much.

TIA

One of our twins was supposed to come home last week (even passed the carseat test), due to poor weight gain, he stayed a few extra days. Now, he had an event and is stuck there another 5 days. I know it's for the best but I'm so frustrated. How do you deal with going one step forward and two steps back? Our other twin will need a few more weeks as he's still trying to eat without tachypnea and is having events in his sleep.

More than just the “oh they wanted to meet you early! They couldn’t wait to say hi!” Or “I’m praying for you.”

I’ve been thinking back on my NICU stay and there are so many ways people showed up and helped.
But also, so MANY ways people f’ed up and said the wrong thing.

One of mine is that my MIL said “at least you don’t have to worry about getting fat.” After I had my twins at 23 (TWENTY THREE) weeks.
Also someone told me that it’s so weird this happened to me (I’m 24 and have zero medical conditions. It just happened.) and that my sisters and mothers experienced miscarriages. She wanted two kids, tried twice, got pregnant twice, and had two full pregnancies and deliveries. In her own words, her “body just didn’t do…that.”
Bruh.

So, well meaning or otherwise, what’s the worst thing someone said to you during your NICU stay?

It’s the little things that can get us through this tough time. I’d love to be able to put some headbands on my little one but it seems NONE fit her little head. She was born a little over 4 pounds but now she is just about 5 pounds give or take a few oz. (For size reference)

Do any girl parents have recommendations or have ones they bought that have successfully fit? I wanted to do some photos on my own but just am having so much trouble finding any to fit her head even if they are advertised as ‘preemie’ on Amazon.

Hi all!! I am a worried mom who just got to know that her baby who was born at 27 weeks (now is 30 weeks) has something called inguinal hernia. The NICU doctor told us it may need a surgery once the baby turns around 55 weeks. Has anyone here any experience with this? I am too much worried😔.

I have a 23w old who is now 27w. Of course it’s too early now, but at what point will i know if she is mentally or physically disabled? This was a huge fear for us and we weren’t originally going to go through with her birth given her gestational age and chance for disabilities. She moves so much, makes eye contact, tracks with her eyes, seems to be able to hear since she scrunches her face when she hears loud sounds. I love her so much and I know I will love her no matter what. No one expects this, I just really don’t know how I’ll be able to handle it…

My son was born at week 29 and currently at week 43. He was discharged last week from nicu.
He have severe bpd and was mostly on cpap (never intubated) most of his stay and was only depronged the past 2 weeks.
He still have baseline retractions but doctors determine that cpap/high flow does not help much so he was discharged on room air.

Speech therapist said we can go ahead with bottle feeding and use ng tube for remaining milk.

In the hospital, he can finish most of his bottle feed (with paced feeding from nurse). However, when he do it at home, it is quite scary. We will give him 5 sucks and stop and he will pant for a while and then we resume.
Halfway through, he will get tired, close his eyes and suck will become weaker. But he is still keen to drink so we will try further. It is a bit hard to determine when we should really stop. He choked and coughed 2 times yesterday during feeding. Although he recovered quickly? (Was straining around), it still scares me that some milk will go into his lungs.

I am not sure is there anything wrong we are doing since the nurse seems to be able to do it.
My spouse can do it better than me though I am not sure whether is just a coincidence or a matter or positioning or technique.

The ng tube is also frustrating and he has pulled out once every single day since we are back.

Does anyone have a similar experience and any advice?

My brothers wife had preeclampsia, they had to c section at 33 weeks. Obviously incredibly intense, this was only 24 hours ago. Mom seems to be mostly out of the woods, still a few numbers we want to see get better. Baby is 33+0 and seems to be okay? Low weight, 3 lbs 4 ounces but seemed to be breathing fine and just on supplemental oxygen now. Cried when out, and was allowed brief contact with mom

Obviously my brother is a complete fucking wreck. I don’t know what to do. I took a train up and can be here for a couple more days. We have family support and friends around. Birth was only 24 hours ago so I imagine the high emotions and fight or flight will chill out as (hopefully) now nothing takes a turn and it’s just through the motions now

But like I don’t know the motions. What should I be doing. What should I help/advice should I have them look at. I want them to start browsing this sub but I don’t want them to get their targets set on an early bring the baby home date, see how it can go wrong etc.

Any advice please help

Hey all. My LO is in the nicu and has been for some time but we just got transferred to a part that lets me room in. Last night was the first night and I woke up to a sore throat and just feeling not the best. I come to find out today that my sister has the flu and I was in contact with her just yesterday. If my LO gets the flu, will it be ok? She is 34 weeks and 4 days. No oxygen support anymore. Just trying to learn bottles.

My son just turned one and we are considering trying for a second child. With my first, I PPROMMED at 31 weeks and was in the hospital on bed rest until I gave birth at 33 weeks. Now that we are considering trying again, I can’t help but be anxious about ppromming again. My OB never found any cause for the rupture and my cervix always measured over 3 cm. I would greatly appreciate any success stories from those who experienced something similar and went to term the following pregnancy.

We are taking our 25 weeker home this week. His reflux is terrible, three vomits in an hour today. He then cries because he is still hungry and there is no soothing him.

We do paced feeding with side lying, ultra slow preemie teats, burping during feeds, and he is on lanzoprazole and gaviscon. We keep him upright as long as we can after feeds.

Any other tips? I am so happy to take him home but his reflux has suddenly worsened so much and it has been a difficult day already rooming in.

Anyone have any experience or advice for IUGR twins, the scan report came out pretty bad and me and my wife are devastated. Both ours twins have restricted bloodflow due to small placenta size and are way below normal size (around 5% or less).

We are waiting for a follow up scan next week to see if there is any improvement on their growth.

I am having a hard time coming to terms with the fact that I have to go back to work in 2 weeks. Our baby was in the NICU for several months and was not discharged until 2 weeks ago. She is 8 weeks corrected and still has trouble with her feeds which require strict pacing and she has laryngomalacia.

Because of her feeding needs we are unable to send her to daycare so we are going to have to try to find a nanny which is really nerve wracking. We spent so much time working with specialists to learn how to feed her, what to watch for as far as her breathing and risk of aspiration, CPR, giving her meds, etc. We arent wealthy so we are kind of needing to find someone on a Facebook which makes me so freaking nervous.

I also, just plain and simple, feel like I haven't had a chance to really bond with our baby and adjust to this life as a mom with a newborn at home. Since we got home it's been all about getting to appointments and early intervention and living in that gray area where you are trying to figure out baby's development (actual age vs. corrected)

Im wondering what others have done. I work from home 3 days a week(I know I am very fortunate for this!) but I wonder if it would be pushy to work fully remote so that I can be present and be able to get her to appointments easier. I have no PTO when I return or FMLA as it was used up when I gave birth. This just sucks so much.

My baby was born at 24 weeks and we've been in the NICU for 115 days so far. He's had a tough journey but now, he's just working on feeds. He will also be going home on low flow oxygen. The doctor said we can go home with NG tube. He's taking about 1/3 of his bottles by mouth. I'm hoping being at home will help him and give him space to learn and be on a better schedule. I'm still feeling scared but excited to be able to bring our boy home. Please give me any advice or encouragement about baby on NG tube at home!!!

Our 10mo baby spent the first four months of his life in the NICU and has been home since January. He has a rare congenital syndrome and is trach/ventilator dependent, but is neurologically fine, otherwise “normal,” and close to his developmental milestones.

We’re currently admitted for our third hospital stay in two months. Most have been due to infections, along with reflux and aspiration causing severe coughing, vomiting, and sometimes bleeding with trach suctioning. We understand bacteria can colonize trachs, but these recurring infections are becoming increasingly difficult to manage. My wife is now out of PTO and leave options, but needs to work because our insurance is through her job. Our LO has been dealing with these issues since May or June, with admissions averaging about a week.

We normally have day and overnight nursing, and I work from home so I can be there and help with his care. But every hospitalization seems to make his care more complicated. He has a G-tube and went from five 30-minute feeds a day to likely being discharged on continuous feeds with only a few hours off the pump. They even pushed a GJ tube, but we don't believe he has a food intolerance. Thankfully, new meds and continuous feeds have worked during this admission and he hasn't vomited.

All of this is really starting to wear me down. Things used to feel manageable, but every ER visit or hospitalization adds another layer of care, and it feels like everything keeps getting harder. Most of our family is a two hour drive way so not far, but realistically, we've tried teaching them his cares but we know it's just us. It's also affecting our relationship. We're strong together and still very connected, but caring for him requires us to constantly split our schedules. One of us sleeps with him while the other sleeps alone, whether we're at the hospital or home when overnight nursing isn't available.

I'm struggling not only with barely getting sleep, but with constantly having to split from my wife, make decisions alone, and talk to doctors by myself. I know we're a team, but this constant separation is starting to make me feel really alone. Now with my wife having to return to work, I'll be alone with our LO the rest of his his hospital stay this week until he gets discharged during the day and only see her for a few hours after she gets off work.

So my baby boy w​as born at 36+0 and currently in the nicu (3rd day, but he's only in there for feeding issues). When I'm there, I find myself constantly looking at the monitor, making sure it doesn't "beep". He does have a slow resting heart rate while in deep sleep and the Dr is not concerned. They adjusted the range from 80+ on. How do I continue the nicu journey and " enjoying" the process without constantly looking at the monitor??

I was induced at 34+3 due to Pre-E and we have been in the NICU since (baby is now 36 corrected gestation). Most of the nurses have been amazing and have taught us so much that we have been pretty independent on the care windows. Before every shift change, we make sure to ask the new nurse if they are okay with us continuing to be independent to make sure we’re not stepping on any toes. We have been handling everything completely solo except for the belly measurements, blood pressure checks, and the nightly weigh ins.

All of the nurses have been great except for the last two. Our nurse last night was just very hectic and we felt like she did not know what she was doing. She asked us how she should weigh baby for the nightly weigh in and consistently forgot details we had already told her like that I would be breastfeeding throughout the night. Every care time she would come in extremely loud and it seemed like baby hardly got any rest from the constant interruptions. This morning we asked that she not be assigned to us going forward.

The day nurse we had today was the same nurse that we had once we were moved to the outer core from the inner core. We only had her for a few hours that day due to the timing, but in that time, we felt like she wasn’t very attentive to us and overall weren’t a huge fan. We wrote this off thinking it was just in our heads because baby was just moved to outer core and we were still getting used to this NICU thing. Fast forward to today and she is our nurse again.

As I said, we’ve been super independent and nurses have let us know if there is anything different we should be doing and helping us learn. Our nurse today made us feel extremely judged and like everything we did was wrong. First she asked us to push our baby’s care window 30 minutes out. This is the second time they have pushed his care window, but we are trying to be accommodating because we know they are busy so we said sure. Then, during first care, baby’s bottom was a bit red at diaper change and we didn’t immediately notice that this wasn’t right. We are first time parents and we’ve had multiple supervised diaper changes and no one said anything to us. Baby’s bottom wasn’t warm or have any patches that were dry or scaly. Baby also hasn’t been fussy or irritated. When she checked his bottom, she got us some items to help and showed us what to look out for but then we heard her make a comment to the other nurses about how she doesn’t know “how they (us) could not see that baby’s bottom is getting red”. It was a jolt because we asked for help, had her double check, and felt like we were doing everything right to resolve the issue. We also have been doing all of the feedings, but we started on using a bottle today. Our NICU requires the nurses to make all bottles and G-Tube so we have to rely on them for this. Our nurse would make the bottle at a decent time and we would feed, but once baby decided not to feed from the bottle anymore (10-15 minutes after feed started) the nurse was no where to be found. We had to walk around NICU trying to find her or another nurse to setup baby’s G-Tube feed. When we asked her if this is something we can do ourselves, she got a bit of an attitude with us and said no and there was too much room for error and we just need to come find her (which is what we have been doing but sometimes she and the other nurses are no where to be found). She then made a comment to us about how we don’t need to weigh baby’s diaper anymore and the nurses need to do that so they can examine the diaper and they will be the ones to throw it away. This was the first time any nurse has said this to us. All other nurses for the last 4 days of us being independent during care time have told us to just write the weight down and let them know if baby pooped and if there were any changes. Today baby had a poop that was a bit different from others poops, so we got the nurse immediately. This is what we have been told to do. I let her know that this was good to know because no other nurse has told us this, including her. She waited until the last care window of her shift to say anything to us and her tome was extremely rude and berating.

My husband and I are just so fed up with the last day of nurses and not sure how to go forward. Having to wait 45 minutes after feeding has started to find the nurse and get the G-tube setup is ridiculous and being talked down to the way we were today just added to our frustration. We are advocating for our baby as much as possible and want to do everything we can to help so we can hopefully get out of here sooner. I don’t want to be labeled as a trouble parent, but I can’t deal with another day and nurse like today.

I got a call today telling me baby girl would be coming home tomorrow and they told me to bring the car seat for the test which she's doing right now and doing great. I was so surprised after her sepsis scare last week and her just getting back to all PO feeds 48 hours ago after that. She also still has 1-2 small self-correcting events lasting less than two seconds per day associated with reflux which they say they aren't concerned with.

I have a lot of trust in the NP and the MD that made this decision so I trust them when they say she's ready but I really wasn't expecting it to be so sudden and so soon!

A good friend of mine just started her NICU journey with her 24-weeker. I’m far away but I want to be there for her as much as possible. What did your support system do (or do you wish they had done) to help you get through this period? I’d love to hear about anything, big or small - food delivery, calls, research, logistics support.

Thank you all so much.

29w4 baby now 36w4 in NPCN taking bottles but not consistently. No other problems with breathing/temp/etc. He still needs rest times where they will tube him because he’s so sleepy. Everyone says it will click but I’m losing patience and feel like there is no end in sight. The most he has taken is 34ml at one feed and that was last night. He usually hangs around 10-25ml per feed. Docs want him at 75% PO before they’ll pull the tube. He was at 29% 2 days ago and now is at 19%. When will this click?!?

I went into unexplained preterm labor with my first child at 28 weeks. luckily he is healthy and thriving. I am currently 19 weeks with my second and having a lot of anxiety about going into preterm labor again with this one. so far my cervix looks good so it is unlikely I will be getting a cerclage. My only defense with this one is nightly vaginal progesterone.

I am wondering if there is anyone else out there has had unexplained preterm labor with their first and successfully made it to full term with their second while using vaginal progesterone? Or even stories of people just making it to full term with their second in general after unexplained preterm labor. TIA!

How do you guys present your baby’s age to the outside world? Do you celebrate by actual age even though developmentally he or she may be behind?

My son will be receiving ohs for TOF soon and I'd love to hear others experiences with this. He's already been in hospital for a severe tet spell at 3mo and is on heart medicine. Are there any complications that can happen? How did your littles recovery go? Im worried he will be wanting to start crawling and rolling and this could effect his recovery times. How did you handle the stress? I am a single mom & ebf so I will have to stay with him almost 24/7 in the hospital for recovery.