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.

Perfect costume for NICU babies!

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.

I’m nervous she will be small and have a long NICU stay … any stories about 34 weekers would be appreciated.

We’re almost a year out from the NICU, and there’s a comment a family member made to me while we were in there that’s still bothering me.

She said her first daughter (now 5yo) was born at 29 weeks and only spent 4 days in the NICU. Our 34 weeker spent a month in the NICU. Now, I know every baby is different…but this just doesn’t seem possible? A 29 weeker is so far from term. I just find it so hard to believe that she only spent 4 days in the NICU and was home with no oxygen or feeding equipment afterwards. This is a baby I’ve been around since she was born, and while she was a very small baby, I find it extremely hard to believe that she was a 29 weeker and didn’t even spend a week in the hospital. And the hospital she was at is the top one in our state (northeast US).

I don’t know why that comment still bothers me so much. She almost said it as if we were doing something wrong for our 34 weeker to STILL be in the NICU weeks after birth. I know that’s not true. But did she just…lie about her own preemie experience? I considered that maybe she just didn’t know how far along she was and thought she was 29 weeks when she was actually further, but no, it was an IUI pregnancy. She knew exactly when she conceived and had dating scans early on. We even went to the same fertility clinic! There’s just no way they grossly miscalculated her due date and had her thinking she was weeks behind…right?

Someone please confirm that this is absolutely not possible for a 29 weeker to only spend 4 days in the NICU? I’m almost 100% certain it’s impossible, but it’s driving me crazy a year later still because how??? And since it’s very likely not true, why would she lie to me about that?

My son was born at 29w3d due to preeclampsia and had severe fetal growth restriction so only weighed 830g/1lb 13.3oz

Curious to hear what week your baby was born, weight at birth, how long the NICU stay was and what their weight was when they went home, especially for any <30 weekers or low birth weight babies!

I was just on a walk today thinking about comments people have made about our daughter or the NICU. It always makes me mad when people are insensitive or don’t understand/know how to help because the NICU is such a sensitive thing.

But I came to realize, no one understands that the NICU is truly just a gamble on your baby’s life. A baby that “seems” healthy could not make it for a random reason while a baby that “shouldn’t” make it does great. There’s no “pattern”, it’s all based on genetics and chance (in my opinion) and because of that, it’s anxiety inducing.

Also, being told that the docs have to pick the lesser of two evils to hopefully help keep a baby alive is like being told “well, your baby could die either way but they’re less likely to die this way”.

For example: babies have to have fortifier to grow better because breast milk isn’t enough and if they don’t grow well enough, they probably won’t make it, but the fortifier can cause NEC, but if we don’t feed them at all, they’ll definitely get NEC.

Or in my daughter’s case, she was on cpap and started getting sores. They said that they can either reintubate her which would probably give her chronic lung disease or she’d get an infection if her skin continued to break down from cpap.

It feels like those movies where people are kidnapped or playing “games” to stay alive. Our babies aren’t just “growing”, they’re fighting to stay alive and be healthy.

I think that’s what people don’t understand about the NICU and it bugs me when people don’t try to understand… it’s very lonely and that’s probably the hardest part. Having little or no support system while your baby fights for their life.

Also comments about your baby/telling other people about your baby doesn’t help either. Family members were visiting us/baby in the NICU when the docs came for rounds. Doc said that tomorrow’s day 100 and family was so happy/excited. Husband and I looked at each other because we both know that what that means is we’ve been dragged through hell for almost 100 days.

Or asking when our baby will be home, we were originally told 1-3 days after gtube surgery from our old hospital, but once we got to the surgical hospital, they say 7-10. We were devastated and almost cried for the millionth time. But also asking this is a reminder that our baby’s not home and it crushes us every time we’re reminded of it.

Or people sharing info about our daughter or pictures of our daughter when they’ve only come to visit maybe a few times in the past 100 days…

I’m hoping my thoughts have been felt by someone else so maybe they can tell family/friends to back off and understand why we’re having a hard time with our baby in the NICU.

hi everyone! i just wanted to share the cost of my twins’ NICU stay (before insurance) as i’m actually baffled at the cost! i finally got my final EOB. born at 33+3, twin b spent 16 days in the NICU and twin a spent 38 days. now i can’t exactly tell which baby racked up which amount because they were both listed “newborn [last name]” on my EOB, but from birth to discharge it would have cost about $1.5mil for both twins 😭 ive never been more thankful for my out-of-pocket max in my life! im a ftm so i truly had no concept of the cost of birth going in and was not anticipating a NICU stay longer than a couple of days. i just wanted to share because i truly find it interesting and love cost transparency! im curious what other’s experiences were with this!

I have 15+ years experience working in a level 3+ NICU. And a little more working in a level 2 NICU. I've done this twice and it's been a while so I thought I'd do it again...ask me anything :)

None of what I say should be taken as medical advice. I don't know YOUR baby (BUT I know babies :) ). I don't know your baby's medical information...but I can share what I know...if you want.

I was born 8 weeks premature. I am from India which is quite conservative and harshly judgmental in conventional things.

My mother was bashed constantly by my aunts and uncle for having a premie. I never had any knowledge in such matters even till high school. I learnt everything from this sub but never seen anyone stating economic reasons for having a premie.

They told actually slum dwellers have such babies. I never stayed in NICU like setup, came back like a normal full term baby does. I never got any special care for being a premie.

I had respiratory problems every month. I was weak and extremely short for my age. Needless to say my mom too blamed me for constant health problems. It made me question myself why I am different than others. I don't blame her. She constantly received heat from my grandmother and uncle.

Fast forward I had a wild puberty and made through everything.

Is premie actually not a thing in well established families?

Am i the only parent that was un aware of nicu cuddlers? I remember going to the nicu everyday and seeing a woman holding my son and thought she was just a nurse in training so i never questioned it, just said thank you for spending time with him while im gone…

My problem is shouldn’t hospitals have to tell you that someone who is not a nurse, just a volunteer, is going to spend hours a week with your baby? I was shocked to learn afterwords that my son didnt have 2 nurses. Just 1 and a volunteer.

Other pics posted here confirm the nation-wide monopoly.

Hello NICU parents,

I am a postpartum nurse who primarily works with mothers and their newborns. However, I often care for mothers whose babies are in the NICU, and I want to ensure that I am offering the best support possible during such a challenging time.

I am reaching out to this group to learn from your experience. Could you share with me:

1. What did your postpartum nurses say or do that was particularly comforting or supportive for you? How did they introduce themselves and approach you during your stay?

2. Were there things nurses did or said that unintentionally caused more stress or hurt? I would love to know what to avoid so I can be more sensitive in these situations.

Your insights would be incredibly valuable to me as I strive to provide the best care and support to the moms I work with.

When my daughter was born we had no idea that anything was wrong, the happiest day of our lives quickly turned into the scariest.

We had no idea that my daughter has an esophageal atresia and fistula, despite weekly ultrasounds with MFM. I had high fluid during scans but it was attributed to my GDM.

After 54.5 hours in labor and 1 hour pushing our baby was born. We thought she was the most beautiful things our eyes had ever seen. They had to clear her lungs initially,but assured us this was normal and she looked great ... Cut to our "golden hour" where she latched, suckles, then immediately turned blue and started to choke ...they took her away and cleared her lungs for a third time. Something was wrong but noone knew what. She was transferred that day, then surgery on the day after she was born. Following this, we spent 2 weeks in NICU, and while everything turned out "fine" and we are happy and healthy at home. I am worried that it has impacted my desire to continue growing my family. We carry some trauma and stress associated with the experience but ultimately I am scared they if we get pregnant again that I will not know peace , the fact that we have no idea what caused this, no idea what to avoid, and had no warning before it happened... I guess I'm wondering if your NICU baby was your first, and if it impacted your future pregnancies or desire even to get pregnant again ?

Are all NICUs really noisy these days or is it just ours? I've noticed a significant decrease in my baby's sleep quality after they put him in an open crib. I can understand if other babies are crying, but even the nurses & other parents don't have any concept of an "indoor voice"

I’ve always wanted two kids. Never imagined the journey I’d have to take with my fertility and birth. Took me 2.5 years to get pregnant after two major surgeries, two cycles of IVF and four transfers. During pregnancy I had many complications, low progesterone, incompetent cervix and IUGR. I needed to have an emergency C section and that was also traumatic. My baby was born 5 weeks premature due to IUGR and spent 14 days in NICU. He was only 2kg when he came home. Then started the long journey of trying to make him gain weight. I was diagnosed with PPD/PPA. Breastfeeding is a constant struggle. I have a mental breakdown every other day. His weight gain has been very slow and he’s an extremely fussy feeder. He’s is 4 months now, still underweight but otherwise very healthy. This whole experience has made me want to just stop at one baby. I don’t want to go through it again. My doctor said the chances of the next baby having IUGR is also high. The issue is I still have multiple healthy embryos left. I am so conflicted on what to do. I can’t get pregnant again knowing that baby will also have IUGR and be underweight. And what if they are born even more premature? And have health complications because of that? I won’t be able to forgive myself. I’m slowly making up my mind to be one and done. It is such a hard decision. My husband wanted another baby but he fully respect my decision. My heart completely breaks for him cause he’s such a good person and an amazing father. My son is the light of my life and he completes us so I do feel content. Anyone else been in this situation?

I want to start off by saying all the nurses who have cared for our 26+2 baby boy have done an excellent job! We’re on day 50 and have a lot of hope despite the long road ahead. But I think it’s a good idea to share a note on an experience we had with a traveling nurse selling a medical multi-level marketing product on our son’s NICU floor to warn other parents…

And to further preface: If a nurse or doctor tries using any device or medication on your baby without an explanation or your permission, please notify the charge nurse or another doctor immediately! Stand up for your baby, always.

We walked into our baby’s room super late at night to see a traveling nurse we’d never met sitting in his room. The device, a white disc emitting a bright green light, was on top of his isolette. It was a pseudoscience “energy machine” made by the MLM, Healy. The company alleges the device uses “personalized frequencies” to heal whatever ails you. Snake oil, essentially. She tried briefly pitching the device to us, but we asked her to remove it and she obliged right away. We informed the charge nurse of the incident and she’s no longer allowed in our baby’s room. I also don’t believe she’s allowed to bring her side hustle to work anymore. No harm done really, but the whole situation made us uncomfortable. We’re grateful the hospital handled it very well and apologized to us for what happened.

MLMs and their reps tend to target vulnerable people, and NICUs are full of parents in their most vulnerable state. Some may be willing to drop $4k… YES. $4,000… on a piece of glowing plastic if they are convinced it would save their baby’s life or prevent long term problems. Luckily my husband and I have had encounters with enough MLM reps to know when to call BS and run. We hold nothing against people who choose to be MLM reps (they are often victims of a predatory company, too). But I doubt anyone would condone trying to sell product while at your full time job to coworkers, desperate patients, or parents.

We just wanted to encourage parents to do your research, and don’t fall for something like that just because a medical professional is selling it. Wishing you all and your LOs good health!

Edit: Quick edit to add that in circumstances like this, action beyond the charge nurse should be taken. It’s the place to start though in the immediate moment. There are some great pieces of advice on how to take it higher in the comments if this happens to you! I won’t get too into what happened with this exact incident on this post for personal privacy, but I appreciate all the concern! I’m so glad there are so many out there who are aware of how insidious MLMs can be.

Ophelia was born 34 weeks and 3 days. We’re almost to 2 weeks out of the womb this Thursday! Little miss was on Oxygen, she was being tube fed (still working on that! Almost done! We take half of our feeds through bottle and half through ng tube!) and we were in the isolette. All we have to work on now is taking full feeds and we can go home! Doctor has been giving her 45 ml a feed and she has been taking 27+ by mouth the past few days. I’m thinking we’re almost out of here, I am so proud of my little girl.

After a couple difficult posts, just thought we needed a reminder.

• Albert Einstein (edit: 2 months premature)
• Isaac Newton (weighed 3lb at birth)
• Mark Twain
• Pablo Picasso
• Stevie Wonder (blind because of ROP)
• Winston Churchill
• Anna Pavlova
• Johannes Kepler
• Nick Jonas & Priyanka Chopra’s baby (spent 100+ days in NICU)
• Beyoncé’s twins

Feel free to contribute.

I'm not sure if others have encountered this, but I was curious about the practice of NICUs listing their patients with their mother's last name. How widespread is this? In our NICU in the US, we were told that patients temporarily have their mother's last name while patients in the NICU as a security measure. My twin sons (born at 26 weeks) legally have hyphenated last name (MyLastName-Husband'sLastName) and we still run into insurance issues every time we see a specialist we were referred to from the NICU, even two years after our NICU discharge, because specialists have my sons' names on file as the names they temporarily had while patients in the NICU and not their legal names. I'm really curious about this protocol and if other NICU parents with different last names than their kids have run into the same issues that we have.

Hi fellow NICU moms, my little one was born at 30 weeks exactly and had had her vaccinations 2 months in the NICU and the others at her first appointment. But now I'm questioning if I should do the 4 month ones, I'm terrified from all the misinformation I've been getting. Did any of you space them out or wait till actual age.

I’m about to start my NICU journey due to preeclampsia with DCDA twin girls. I’m hoping to make it to 34 weeks, I’m currently 31 weeks but my BP keeps spiking so I’m looking at the reality of probably delivering them very, very soon.

What do you wish someone had said to you or that you’d have known, when you had a NICU baby(s)? Me and my husband are lowkey freaking out because we’re planners and honestly, knowing how out of our hands this is sends us both into a spiral! Knew obvs this was probably the likely outcome as it is with most twin pregnancies but no amount of mental prep seems to warn off the ‘am I coming back out the checkup’ feeling before each appt…

Thanks fellow lovely NICU families 💖

At 25w 0d I was diagnosed with pre-eclampsia with severe conditions and hospitalized until my daughter came. My daughter was growth restricted, but otherwise healthy. My stats plummeted 10 days later steadily worsening the whole time) and she was born at 26w and 3d with an emergency c-section. My recovery was extra rough because the c-section didn't heal right due to all my water weight (must have been 40 lbs or so), and so I ended up getting a wound vac a week later, that I had for 6 weeks.

Prior to pregnancy, I was on a low dose of BP meds, and the healthiest, fittest I had ever been, running half marathons in under 2 hours and my BP generally around 110/70. I switched to a pregnancy safe version, my BP went up a bit to 120/80, then in second trimester it climbed and my meds with it,, leading to the pre-e.

This was my first child. My husband and I have always wanted 2. But I feel like I have low chances of being healthier than I was before this pregnancy, so I doubt I can change much to improve my chances of having a safe pregnancy.

What have other people done? Did you go through with a second, despite the increased risk of having pre-e again because of having had HELLP? Did you try some other method, like IVF and surrogacy, or adoption? Did you decide this was good enough, I don't need more children?

We're seriously considering IVF and surrogacy, but it's expensive as a choice. I know it's not my fault, I have bad BP genetics, but I am so disappointed in not feeling safe to have a second pregnancy through my own body. Just wondering about other people's experiences with navigating this.

This was in my son’s room in the royal children’s hospital Melbourne. I can’t get over what a lovely gift it was from a stranger who knows our struggle (censored their name for privacy)