I unfollowed this thread a few weeks back because the baby I was adopting had made it to almost full term so I thought surely I wouldn’t need to be here! Welp, I was wrong. Born at 37+1 and in the NICU for respiratory support. I realize we are extremely blessed and he is doing generally pretty well and I am thankful for that. I slept here last night… and by slept I mean maybe 1 hour with all the in and out, beeping, etc. I’m a zombie. How do you all handle the added interruptions to sleep being in the NICU? Do people go home to sleep? I’m such a poor sleeper as is, I don’t want my day time with him to be me being a zombie 😭

My girl was born at 25+2 and discharged on Tuesday at 38+6 with an NG to continue to work on feeds at home.

She’s done really really well since we’ve been home, taking about 85 percent of her bottles and we tube the remainder.

Her NP wanted to talk to me about switching to ad lib PO today, but with horrible luck we ended up back in the ER with congestion and retractions. Luckily a good sucking out and a negative virus panel sent us back home, but we decided to reconvene on Monday to discuss the next steps with the feeding tube.

But for about 3 feeds over the last two days she’s still been rooting after she ate her full bottle. Instead of making her another bottle I’ve been offering her my breast. The first time she latched for about 5 mins, then 8, and this last time for about 12.

My problem is, she latched for about 12 mins a little less than an hour and a half before her next feed. So I feel like she won’t want the entire bottle and I hate to tube the rest if she’s full. What should I do?

First Time Mommy here 👋🏾 My Baby Girl Jewelz Was Born 10/16/24 due to me developing severe preclampsia. I thought my pregnancy was going fine until I went in for a routine check up and was admitted to the hospital that night. The weird thing is I had no symptoms leading up to it other than minor swelling in hands and feet. I’m feeling all the things. The guilt, helplessness, and worry. During my emergency c section I lost 3L of blood due to hemorrhaging and had to receive transfusions. Everything in my life drastically changed within 24 hours 💔My baby girl is a true fighter but I honestly I feel like I failed her. The doctors are saying overall she is doing well but that we could be on the NICU pass her due date (02/01/25). She weighed 1lb 2oz at birth and currently 1lb 5.1 oz today! They have her on a ventilator due to her lung development. It may sound selfish but I feel like I’ve been robbed of my experience 🥺 I was unable to have a baby shower nor maternity photos, I was just starting to feel her and it feels like she’s been taken from me. It’s killing me that I am unable to hold my baby. It’s like one day you’re pregnant and the next day you’re not. Financially, my husband and I thought we had more time so it’s additional stress there. I came across the community and I guess I just needed to vent to a village that would understand. All advice and prayers would be greatly appreciated ❤️

My LO was 33 + 1 in the NICU for 34 days, we just came home two days ago. He was there bc he was having respiratory issues, and now that we're home I feel numb. I'm balancing between excited, terrified, overwhelmed, scared and i end up just sitting there feeling nothing.

How do you cope with sleep? I constantly feel like he is breathing fast and i'm gaslighting myself into thinking he's okay? I feel like there's no way to know if he's okay beside the obvious, not breathing, panting, red face etc. because he didn't do any of that in the NICU just had mild tachypnea. How do i know we don't still have it?

How do I sleep? And he does not want to be put down, i assume it's the trauma of coming home and the new environment. Has anyone else had a NICU baby come home and want to just stay on you?

32 weeks today & woke up with cramps that brought us to L&D - she was born 8 1/2 hours later in a really quick pre term labor. She was diagnosed IUGR at 20 weeks and while she's teeny tiny she came out at 2lb 15oz which is even better than she was measuring from ultrasounds. Turns out the cord implanted in the membrane of the placenta instead of directly into it which restricted her growth.

She's in great hands. We can believe she's here but she's already a fighter.

I found a note we received in a care package from the Ronald McDonald House. This note came at one of my lowest points on the same day, the day my baby was tested for Central Congential, Hyperventilation Syndrome and when her father left for the military. It lifed me up just enough to find the strength to go downstairs and eat for an hour. It gave me the strength to trust she wouldn't die while I was downstairs for the first meal I ate in 3 days. It was the first time I stopped crying despite still being low. That note made me feel like I wasn't alone.

I just want to say, sometimes it's the little things that get us through.

Side notes: the test was negative and she officially was diagnosed with infant sleep apnea. Her father tried to stay, but they made him return. The sergeants really pulled alot of strings to even give him 3 days. It was kinda a hint hint wink wink, you have this day to this day we won't be checking your room thing.

Oh and she is now a healthy happy 7 month old.

My full term son is 6 days old and was already diagnosed with an extremely rare vascular condition at 4 days old. So rare there are less than 100 other males in the US with it. The odds are 1:10 Billion. We were transferred to a level 4 NICU at a research institution so that the best specialists could evaluate and treat him. Everything seemed so bleak and then hopeful again, as they told us most of his treatment could be outpatient (but probably life long) and we were supposed to go home today. Then they ran a few more tests and decided to start a new treatment tomorrow that will keep him there til at least Monday. My husband decided to come switch with me since only one person can stay and my post partum recovery is not going well sleeping on the couch. I feel so empty without my baby. He was with me for 9 months, and now my stomach is empty and he isn’t in the bassinet next to me. I feel guilty for leaving, but my husband is really concerned about my physical and mental state if I don’t sleep in our bed and get some rest. How do I deal with this guilt? I’m his mother I should be with him!!! I need him. I feel like the air has been sucked from my lungs and a weight has been dropped on my chest.

This is my third update to my initial post where my wife experienced PPROM at 21 weeks.

We have now made it to our second milestone, 28 weeks! Back when this all started the NICU doctors came to speak to my wife and I, and they continually reiterated how important making it to 28 weeks was. So now that we have finally hit that milestone, it feels like we can finally take a deep breath. Today they conducted a BPP Test which is scored out of 8 total points. 2 points for breathing for 30 consecutive seconds, 2 points for flexing an arm or a leg, 2 points for 3 big movements, and lastly 2 points for fluid levels. We were ecstatic to hear that he scored a perfect 8/8. Fluid levels today measured 11.5cm, which is up from our last sonogram and is well within accepted range. My wife has still not leaked since that first fish of fluid at 21 weeks (so it has now been over 7 weeks without any leaking).

We feel truly blessed to have made it this far, considering how bleak things looked just 7 weeks ago. My wife has remained stable as could be during her stay at the hospital, and for that we are grateful. Our baby continues to grow and develop healthily, and we pray that he progresses everyday until it’s time for him to arrive. The doctors are still preparing us for my wife to be induced at 34 weeks, so the next 6-week countdown is on! We wanted to thank this group for the unwavering support and we will continue to pray for those in similar situations.

Today was another hard day. Our baby had to be paralyzed again because when they lifted the paralysis last week she was not able to keep her satiations high and her oxygen low despite everything the doctors were doing. They gave her a one time does of the paralytic last night and her saturation levels immediately increased to 100. They are talking about keeping her paralyzed at least for a couple of days, maybe a week. When I went to see her today she had a hard time getting her saturations up and was sitting in the low 80s they also had to increase her oxygen back up to 100%. If her being paralyzed does not help then maybe they will do the ecmo. They haven’t discussed it but I’m trying to prepare myself. Has anybody had experience with ecmo? I am so scared for our baby. It is so hard to stay positive when she is going through so much. She has severe severe lung disease and I always fear the worst that she will not be able to make it despite everything the doctors are doing. She is almost 37 weeks

My baby is 9 months, 6 months adjusted and not laughing yet. Should I be concerned? She babbles and does little squeals and smiles often.

Hello! My son had a g tube placed earlier this week and is now home. Anyone else with a g tube kiddo found a good app to track how much they take by bottle vs the tube?

Is there a discord group for NICU or preemie parents? If not, is this something that would interest anyone?

Hi there,

I’m 28w5d pregnant with twins and was admitted to the hospital at 27 weeks for high BP and preeclampsia. They later saw that twin A has sFGR- fetal growth restriction, blood flow toggles between intermittent absent and absent, the Doppler are also not looking so great. The doctors seem to be in a grey area whether to wait or do a c section so I’m being monitored regularly with ultrasounds and twice a day nsts.

After todays ultrasound the doc doesn’t thing it’s an emergency situation, but she anticipates delivering the babies next week, which would be 29 weeks.

I’m a first time mom, and this is our first viable pregnancy, my husband and I havee dealt with unexplained infertility for 10 years and I’m just terrified of what this all means and what life as NICU parents of twins will look like, if these babies will have good outcomes or will they have developmental issues.

I guess I’m just rambling hoping to hear some success stories from those who experienced something similar. 29 weeks sounds so early, I think my mind would have been a bit more calmer had it been 34 weeks or so.

I am admitted to antepartum and am hoping for stories of babies born at 29 weeks. Would love to hear both the good and bad. What is the likelihood of having a baby without significant health issues? If your baby/toddler/child has health issues, what are they? I’ve met with neonatology and I know the risk for severe IVH and ROP is low at this point, but I can’t get them to tell me more specifics. TIA.

My baby is currently on neosure and seems very constipated on it she has hard stool and pushes a lot and nothing comes out 😭 wondering if switching to Enfacare would be better want to hear from other preemie parents

My LO was born at 26w and 505g. At 30w they attempted her first extubation on NIV NAVA but she only lasted an hour before she got too tired out and they had to reintubate. At 38w they attempted her second extubation and she lasted about 5 weeks on NIV NAVA with the last 10 days or so on NIPPV before she had an event and they reintubated her. She’s now 45w and 3330g. We’ve transferred her to a specialized BPD unit at a different hospital and they say they want to attempt another extubation on Monday. I’m beyond nervous and want so badly to have her be successful and this be her final one. We are doing everything we can to set her up for success this time around. DART starting today through the weekend and then weaning to prednisolone. Albuterol on standby, bag lavage suctioning to thin secretions so they don’t block her airway and IV access in case she needs a morphine drip to keep her comfortable. They’ll also stop her feeds around the time of extubation so they can keep her belly vented. I’m really hoping this works especially because she’s so much older now. Any words of advice or encouragement would be appreciated!

Hi everyone,

I posted a couple days ago about my LO having NEC. He ended up needing surgery and got 10 cm of small intestine removed. It's very close to his stomach, so the reattachment surgery will be a bit more risky. He also has to have a heart surgery eventually, but there are talks of moving it up due to it potentially being a large cause of his NEC. In general, though, we are very lucky. He is doing okay and is currently stable.

Anyways, I am dealing with just a huge amount of guilt recently, like I caused him to be sick. Logically, I know none of this is my fault. But at the same time... I feel like it's my fault that he's here in the NICU needing all of these medical interventions. I feel like it's my fault my body caused the IUGR that led to him being delivered at 31 weeks. I feel like I caused NEC because I can't produce enough milk for him. And now that he's post-op, even though his nurse said I can hold him, I'm scared to do skin-to-skin because he has things in nearly every limb, has 2 stomas, and is currently intubated. And I feel just so immensely guilty that I'm scared of touching my own baby.

Is this just part of the NICU parent experience? When does it go away?

My baby was born 31+5 and is now 38+2. He had IUGR and was born at 1.19kgs but is now 1.8kgs. My wife’s breast milk has almost finished up and we can’t support his requirement now. Which formula is better? Options are Neocate LP, NaN Pre and Enfamil Pre?

Has anyone fortified with RTF neosure and their breastmilk versus the powder? If so do you know how I’d fortify? Meaning how many oz? He’s getting extra 26 calories right now. My baby has been on the powder which seems harsh for him the last few weeks. Wanted to try the RTF version he was on in the NICU in which he tolerated much better. I’ve already called pediatrician office and left a message just no response yet! Thanks in advance!

anytime we go out i usually wear him and it grabs A LOT of attention. 95% of people say the ‘aww how old’ and when i say he’s almost 3 months i get a look. and it’s not like an awful look but i can tell everyone i say this too kinda have a look like ‘oh he’s small’ or think im lying (which idk why anyone would do that) and then i proceed to say he was born 2 months early. birthday is 8.8 and was suppose to be 9.30. when i say this everyone is like OHH okay that’s why he’s so tiny. people just don’t understand not everyone makes it full term and there are babies who have to come early. idk why i feel like i have to say this every time someone asks. i guess i don’t have to but i just feel like i need to stand up for him in a way? my husband doesn’t understand why i explain that to people and tells me i don’t have to and i guess i don’t but i do? does anyone else feel this way or do this?

Hey y’all!

So a little background, daughter was born 27+4, got a gtube around 41 weeks, and has had it and been home for almost 3 months! Gtube is great and she spits up quite frequently which is normal. She started getting better because she’s been getting bigger, but the past 3 week, like clockwork between 8:30-9:30, she’ll spit up EVERYTHING. Literally. She spits up upwards of 8 times in that hour and they’re like major, projectile spit ups. The tricky thing is that she eats every 3 hours so 6am was her last feeding, put down at 7am after eating for 30 min and held upright for 30 min and she won’t spit up until between 8:30-9:30. The spit up is a lot more watery but her face will turn red because of how much force she’s trying to push. Has this happened to anyone else? We know it’s not the milk/fortifier. She does poop around this time which does cause her to spit up, but when it’s in this window, it’s just very violent and we feel like there’s something else going on…

Has anyone had experiences with their LO fighting this type of infection in the NICU? Or infections similar?

Everytime I try to find survival cases or cases similar to Baby Damian I only find studies of infants post-mortem.

I’m just trying to find more hope for my baby.

I’m a FTM to a 4 mo. I has a normal low risk pregnancy but baby ended up in the NICU due to high levels of jaundice, desats that placed him on spell watch, and hemolysis (destroying red blood cells). He was hospitalized for 9 days and the experience was so shocking for me it was a bit traumatic, even though I know it’s small potatoes compared to other parents here.

Our baby has been home and doing well, except he’s been followed by hematology due to anemia, ongoing hemolysis and neutropenia. We still don’t know exactly what is happening but received results yesterday that he may have a genetic mutation that accounts for his presentation. We had just started to consider adding another baby to our family (we had thought we were one and done but love our LO so much we want one more) but our doctor suggested that another baby will likely have the same medical course and will need NICU time.

This is devastating to me, and I can’t imagine having another pregnancy, knowing that we will have to be separated, and our baby will have to be in the NICU for an unspecified amount of time.

Have others been in similar shoes? How have others managed when they knew having a second child would likely result in another NICU stay? Any people who decided to stop having children due to it?

My 7 and a half month old daughter (corrected age) is currently in the hospital with RSV (bronchitis). She is on day 8 of the disease and we thought she was turning for the better but after coming off of the high flow she still can't saturate on 1 litre of low flow oxygen.

I just wondered about people's experiences with RSV and how long it took people's babies to recover after having the disease because my daughter has never been on a litre before and I'm worried were back to square 1 after 4-5 months the of working to get her to 0.3 litre of oxygen.

Deciding on a tracheostomy for PPHN** (persistent pulmonary hypertension of the newborn)

My 26+5 LO is coming up on 7 months next week and he has overcome so much already - PDA ligation, multiple fractures, eye surgery, ileostomy, and take down, just to name a few. However, breathing is still a challenge for him. He has only been on high flow once but ever since battling a pulmonary hypertensive crisis from being sick and needing to be intubated, he's been having a harder time being able to wean his respiratory support.

He's been extubated for nearly two weeks and he's still on very high settings on his CPAP. There are moments where we notice him visibly working hard to breathe but most of the time he seems calm, if not pretty sleepy. His team pulled us in for a care conference yesterday to introduce the idea of a trach. They have a couple of things they want to look at first before they do anything but I think the purpose was to give us an opportunity to educate ourselves more on what that could look like.

To overgeneralize, he needs time for his lungs to develop. The team is confident that they will grow eventually but there's a big question mark on how long that will take. And as of right now it sounds like we have two options to consider:

1. A trach, with the potential to be discharged within a couple months of surgery
2. No trach, with a definite reality of a longer NICU stay

My partner and I are looking at this similarly but also very differently. I think about LO's quality of life right now- he's at the age now where he wants to be interacting with the world and engaged. I'm worried that if he's unable to progress at a meaningful pace (really any movement toward weaning) that it will have an adverse impact on his development. On the flip side, my partner is worried about his long term development with a trach. We will already be dealing with a G-tube and a physical disability. He is very worried about how a trach could delay his communication. Also of course, the complete change in lifestyle that will need to happen with the equipment and home care.

We will obviously do what needs to be done to care for our son, but while we still have options I'm so curious to learn from other parents who were in similar situations.

Did you decide to do a trach? Did you opt for longer stay? How are your kiddos doing now?

Hi r/NICUParents! You may have seen me popping into some threads answering questions about development, the transition to home, or things parents can do at bedside. If you haven’t, I’m new to this sub but excited to offer any insights that I can within my scope! I know how challenging it is for families of NICU infants!

This sub has been really enlightening for me for what issues really tend to be difficult with the transition to home, and I’m able to see some trends and bring that education into back into the NICU to better prepare parents.

So, feel free to ask away!

UPDATE: Hi again! I’m really enjoying all of these questions, so feel free to keep them coming! Going forward in this sub, I think I’ll post something similar periodically to capture more people, questions and trends!

If you’re also looking for more general NICU / developmental content, you can check out my insta: @thepreemiept - where I’m just starting to build resources and information that parents need when in the NICU and what to expect with the transition to home!

Have a great day everyone, and keep asking away!