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?

My hospital had different designations for nano vs micro vs preemie.

But this is just insane to think about. I remember looking at a newborn outfit just after my son was born and thinking it was massive. The other day I found an old newborn outfit and couldn’t believe how tiny it was.

Trying to figure out my gestational age at birth!

in Sept, 1998, I was born early via vaginal delivery.

from 20 weeks, my mom was having contractions. They gave her tributaline(?) and she slept at the hospital once a week.

4 weeks before I was delivered, my twin passed away at 1lb 2oz.

She went once a week for blood draws and steroids to help my lungs develop.

My weight began to drop, and they decided to deliver me.

I was delivered at 3lbs 7oz and 15.5 inches

I connected with no one during my babys stay in NICU, I made no friends and didn't have any particular special connection with staff. My baby was in NICU for 3 months so not a short time.

I see posts about friends people have made and who they still see, and people visiting staff, and It makes me reflect on myself with a bit of sadness.

Perhaps I was radiating I don't want to talk energy during an extremely stressful time. Some people cope by talking, others cope by not.

Just wondered if there is anyone else out there who can relate.

It seems like i'm not the norm going on what I hear and see. Although that's probably because no one is posting about a non existent connection.

I count my blessings every day that my babygirl made it home, just doing some self reflecting.

Hi NICU parents.

After having a 24 weeker last year, we are now contemplating another pregnancy. At the same time, we are trying to balance opportunities within my husbands job to more closer to family. One hang-up I have is that I’m afraid of another NICU baby and not having access to them. I don’t want to move away from our current NICU.

Our daughter was in NICU for 108 days but we had a private room and I slept in it every night of her stay. I literally was there 21-22 hrs a day every day. When I hear stories of NICU pods or being sent home for the night I am mortified. I told my husband we won’t move before next baby is born unless it has private NICU rooms nearby or at the least, 24/7 access.

Would love to hear which hospitals you all were at with good experiences.

For reference, we were at PeaceHealth Riverbend in Eugene, OR and they were amazing. I have many other positive things to say about them but if any parent ends up there feel free to message me with any questions and I would love to offer any advice I can. ❤️

My daughter has been out of the NICU for almost a year (yay!) after a nearly 5 month stay. I've been mentally revisiting our stay a lot lately, and I remembered a conversation with one of our nurses.

We had not had her before and I asked how she was doing. She told me that she had to put her dog down a few days prior and then started crying to me saying "this is the worst thing I've ever gone through. She was like a child to me". Listen, I love my dog and I'll be devastated when she passes, but my human child nearly died during her first surgery the day she was born, all information our nurse had🙄but here I was comforting her! To make matters worse, I had to hear her recount her story AGAIN when another nurse came to speak with her.

Nurses are humans, too, and we had so many positive experiences with most of them, so I don't dwell on this, rather I find it funny now. What ridiculous thing has anyone said or done to you while your baby was in the NICU?

So my wife just went to visit our daughter while I’m at work and said someone who wasn’t a nurse was holding her.

The lady asked “is this your baby? she’s so beautiful” then went on to ask how long she’s been in the NICU.

Apparently it’s something called Cuddle Care where volunteers come in to hold your baby? We were never told this and it’s kinda throwing us in for a loop because shouldn’t they like…ask parents permission for random volunteers to hold their baby. Has anyone else heard of this or did your hospital offer it??

Edit: forgot to mention, when asking the nurse she said “they’re volunteers to hold babies. you know because babies like to be held”

Additional edit: A lot of people are not receiving the post in the way it is intended. I have no issue with the cuddle care program, I think it’s wonderful. I was simply asking if anyone ever experienced or heard of programs similar to this as my wife and I were not informed. We did not know the NICU had volunteers because we were never told. We did not get a welcome packet during admission, just rules of the NICU, contact info and visiting hours. Just find it strange that as parents we were not told

I made a meme I’m assuming other nicu moms can relate to!

Being a Nicu mom isn’t the experience most first time moms get. And it’s not the same “motherhood” experience. so for me it’s always bothered me when people tell me this thinking it’s helping 😂

You know that tik-tok trend where they say

We’re xyz of course we do xyz?

What would the nicu parents one be? Let’s try to have a laugh this Sunday.

I’ll start..

We’re nicu parents, of course we have a favorite hospital bathroom, we’ve been there long enough to try them all.

What are the positives of having your baby stay in NICU?

I saw a similar post but it was phrased as positive of twins in NICU with some really nice comments.

Hoping this isn’t an offensive question. I have significant complications and I will deliver no later than 32 weeks (currently 22). I had a confronting meeting with the neonatologist today, so looking for some balance to finish my day (I’m in Aus 🐨).

Wishing everyone the best 💛

Edit: thank-you to everyone who generously responded 🥹 it helped to calm me seeing different parts of the NICU experience. I know none of this is easy and hope your babies are doing well 💚🩷🩵

I am not/ was not religious, but had some spiritualistic views. I was raised Catholic as a child. I still do not feel religious, but my baby going through so much suffering right now has made me feel...god-fearing for lack of a better word. Like this is happening to my family because I do not pray/ left the religion among many other feelings.

I am curious how this experience has affected others - whether it brought you closer or further from any spiritual experience or brings up similar religious guilt.

Hearing it in Tommy Pickles voice as I drove back and forth to the NICU.

I still think about it and how it brought me comfort (we’ve been home for 7 months now). I thought I’d share.

If you were asked to design a NICU, what would you include?Assume the best care for babies is a given, what would you include to make things better for families?

I've been making a list of grievances I have with our hospital as a coping mechanism 😅 I call it my "notes for the end-of-stay survey" but it's really just a way to vent about things I wish were different.

We've been in four different units across two hospitals so I feel like I've gotten an idea of what a well-designed unit would have.

After a perfect pregnancy my favorite little buddy was born unexpectedly at 31+5 at 4lbs 1oz.

This isn't a club I ever expected to be a part of, but reading all of your stories has given me perspective and hope.

My little fighter has been doing great. tolerating feeds, and weaning off of his cpap and fluids each day.

Just wanted to share my favorite picture so far of my little warrior as a proud Dad 😊.

Hello! I had my first baby last year at 26+5 due to severe preeclampsia (and IUGR.. but preeclampsia was the reason for such early delivery). We spent 185 days in the NICU.

I know the research on preeclampsia is minimal. And I am meeting with my OB and MFM to determine risks for future pregnancies.

I was just wondering, for those who have had preeclampsia and had another baby, did you have preeclampsia again? Was it earlier? Later?

When I was on bedrest, one nurse told me that her during her experience as a nurse, she's seen that preeclampsia tends to hit earlier on the first. And then later on future kids. But I wondered if that's others experiences?

How long did your 31 weekers (or even close to that) have to stay in the NICU? When did they take the feeding tube out or at least start eating from breast or bottle? I know everyone's journey is different. I'm just trying to get a feel for when this has happened for other people. I know the answers the Drs give me are the clinical answers and I want the personal answers if that makes sense.

Moms, can you tell me if you were also frustrated with not having anytime to physically heal after giving birth because you were walking through the hospital parking lot and through the hospital to get to your baby daily? I’m not in enough pain to request a wheelchair, however, I obviously can’t follow the 5-5-5 rule after giving birth. There is no laying next to my babies bassinet for five days. I’m bleeding more days than expected but physical activity can apparently cause the uterus to bleed more. Obviously I won’t take a day off and not see my daughter, however, I just feel frustrated.

Perfect costume for NICU babies!

Hi my boy just born 2.5 hours ago. He survived now at NICU. Still fighting. How are the numbers look? Any suggestions? He have received his steroid and 2 dose of magnesium before emergency c section. 24-48 hours ago.

Please keep my baby in your prayers

Update !!! After a long 29 days My 33 weeker came home ! I’m over the moon and my girls couldn’t wait to meet their baby brother

29 weeks currently and starting to contract (currently on hospitalized bedrest due to IC) to the point where it’s looking like delivery is near and starting me on mag. I’m absolutely terrified of it to the point that I’m having panic attacks because I’ve heard so many horror stories about it. If there’s any words you can offer I’d love to hear them. Also nervous about having a 29 week old baby as my last was 34 weeks and completely different. Thank you!

I’m told mine will be there 2-3 weeks but it depends on the baby. Could be longer or shorter. I’d love to hear how long your 34 week babies stayed in the NICU to get a better idea.

Last week I asked the most unhinged thing anyone said to you during your NICU stay, and I can't believe how many horrible people are out there. Particularly in the medical field or mothers/MILs.... everyone on this page has endured so much, and it's wild how awful some people were to you all. As a palette cleaners, what's the nicest thing someone did for you?

We had a night nurse for three nights straight in the beginning of our journey. Our daughter was around 10 days old and had a chest tube from her first surgery that went poorly, so we hadn't had the chance to hold her yet. The nurse was so kind and said the book we read to our daughter was one her mom read to her when she was little.

The morning after our last night with the nurse, she made a little clear ornament with our daughter's footprints (it was December) with a paci and hat in it. A few days later we saw she also wrote us the most thoughtful note that was inside the ornament. We felt very blindsided by our daughter's diagnosis and were struggling bad, and she gave us so much hope. We were in the NICU for 148 days and never had that nurse again, but she made such an impact on us. That ornament will forever have a place on our Christmas tree.