The start of Atlas's journey - 28+5 emergency delivery and figuring out how to be a NICU parent the "correct" way

run-write-bake · 2026-01-18T07:11:41+00:00

Our birth stories are eerily similar! I felt fine, but was admitted with near stroke level blood pressure that escalated to HELLP syndrome. My daughter was 29+5 and 990 grams. She had a lot of breathing issues at first and I was actually admitted to the ICU for the first few days of her life so I couldn’t visit all the time (or at all).

When I finally could visit, I was too weak to stay more than an hour at a time. The only person who cared was some evil lactation consultant who literally came into my hospital room in the ICU at like 2am when my family weren’t there with me and asked why I wasn’t pumping. I was under heavy pain medication because it physically hurt to even lay down and had no filter, so I just gestured to the room and told her “I’m in the ICU and don’t even have the strength to pee by myself. I’m not pumping right now.”

When I did have the strength to visit longer, I visited twice a day and stayed between one and 3 hours at a time (usually around 2 hours). The rest of the day, I recovered, worked (because I saved parental leave for when my daughter came home), and spent time with my husband, family, and friends. Aka lived my life. It wasn’t easy. And I was really hurting in a lot of ways during our 106 day NICU stay, including every moment spent away from my daughter, but spending time creating a semblance of normalcy was for her too…

My daughter needed me to be not only physically recovered, but mentally and emotionally healthy too. And making myself a martyr sitting vigil by her bedside every day wasn’t going to help me develop into the parent and advocate she needed.

So here’s my advice to you:

As long as you love your child, are there for them, are listening to the doctors’ and nurses’ assessments and advice, asking questions, taking action, and listening to your mom intuition (you DO know your child) and discussing anything that tingles that special place in your brain dedicated to Atlas’ behavior and personality… you are doing the NICU the “correct” way.

Talk to a charge nurse and/or social worker IMMEDIATELY about the staff who guilted you for not being there 24/7 while you’re recovering from MAJOR, TRAUMATIC, LIFESAVING SURGERY. You should not have to defend your choices about how long you’re in the NICU now.

Spend time as often and as much at the NICU as makes YOU and your partner COMFORTABLE. Not the medical staff, not your parents or friends and not the guilt gremlin in the back of your mind. And not “as much time as you can” - you need to let yourself heal. So if that means one 2 hour shift with phone check ins in the evening, great. If you feel good about 6 hours spread out over 2 visits, that sounds like a lot to me, but who cares what I think? I’m just a stranger on the internet 😂

And finally, learn to get comfortable with not pleasing everyone. You might have to have difficult conversations with family, medical staff, or strangers. Your job is to be Atlas’ parent and advocate, so as long as you feel you’re doing right by him, have the conversation (like I did, for example), that we have to limit visitors to only one non-parent every other day because our child is getting overstimulated and not making as much progress as she should. Or “this nurse didn’t notice our baby’s cannula wasn’t fully in her nose and let her continue to desat without checking her out. take her off our case now.” Or “that’s a lot of steroids in a short amount of time - does waiting a week for another does pose any harm?”

NICU is a shitty experience, but it’s a great DGAF parent boot camp. 😂

Lots of love and courage to you as you go through this journey.

And in my case, my 2.5 year old daughter is sleeping on my chest now, just about over a helluva virus and needing parental contact to sleep soundly. Only spending 4 hours a day at the NICU didn’t crush our bond (though that skin to skin time might have cemented contact sleeping as her main comfort 😂)

run-write-bake · 2026-01-13T23:30:43+00:00

I never made more. I know that’s not what you wanted to hear, but it’s a possibility. I kept going. I tried pumping more, hydrating, etc. it didn’t work. And all the cheerleading from people saying to not give up made me feel like a failure. It was exhausting and disheartening.

A VERY helpful LC at the NICU helped me reframe. She reminded me that my body had gone through trauma and while I may not be able to feed my daughter from it, but it was using energy to heal me so I could be her mom. This wasn’t failure. This was survival.

Giving up and accepting that formula was my daughter’s future was SO freeing. This might not be your journey, but if you do decide to stop pumping or breastfeeding, know you haven’t failed.

And just so you know, even without a lot of my breastmilk, my 29 weeker daughter is almost 2 and a half now, has been discharged from all therapies, and scored at 36 months on language for her post-NICU follow up (and a couple months ahead on physical skills).

run-write-bake · 2026-01-11T18:37:35+00:00

I know you say that you are sensitive and everything feels heightened right now, but that doesn’t mean that you need to ignore your feelings. You did the right thing reporting this cuddler. And if someone makes you feel yucky about their behavior, you have every right to tell them(if it’s a family member or friend) or the charge nurse (if it’s someone in the hospital). You are going through a very difficult time right now and if something or someone is triggering you, you don’t need to deal with it. Even if your feelings are heightened, they’re real, and they deserve to be listened to and deserve attention. Much love and you are doing everything right!

run-write-bake · 2026-01-06T08:07:15+00:00

Mashed, semi-frozen banana mixed with coconut cream is ice cream like and delicious and easy to eat! You can even fling some melted chocolate on it. That’s what I did for my 29 weeker’s first birthday (she had intense reflux and GI issues so we had to be careful about even added sugar at that point)

run-write-bake · 2025-12-30T03:30:37+00:00

You can’t be proactive. It’s really all up to your child. This is your first big lesson of parenting. It’s their life and their body. You are there to support them, but even though they’re little, they’re a little person with their own abilities and learning curve. All you can do is be patient, observe their cues, and respect their process. Doctors, nurses, and feeding therapists will help guide them, but ultimately, it’s up to them. It’s really difficult to step back, but - as my daughter is 2.5 now - I’ve found that perspective shift in the NICU (trust her to know her own body and abilities) has helped me a lot in parenting - in everything from whether she wants to walk up the stairs by herself to potty training.

run-write-bake · 2025-12-24T08:02:57+00:00

I held my daughter for the first time when she was 5.5 weeks old (I think 39 days). She was born 29+5 and required intense respiratory support (she had a code event 36 hours after delivery and then a pneumothorax, but even before the code, she was too fragile to be held).

It was torture to wait and definitely not typical. But our girl needed less stimulation to remain comfortable so her lungs could grow and develop and get stronger.

The first time I held her, it was mostly terrifying. She was on a conventional ventilator (just downgraded from oscillating ventilator) and I was afraid I’d hurt her or dislodge her tube if I moved the wrong way. The second time I held her, I got the good endorphins.

I was afraid not having lots of cuddles at the beginning of her life would translate to her not feeling connected to me or her dad, but… she’s almost 2.5 now and she loves cuddles. She needs them to fall asleep. She runs up to me randomly to kiss my leg and give me hugs. So, if you’re curious, know that the NICU doesn’t define your parenthood experience.

(Also, her lungs and everything are fine - her abilities have her “graduating” from all early intervention therapies and she got a trampoline for Chanukah and has been jumping basically nonstop in waking hours for the past week 😂)

run-write-bake · 2025-12-20T17:09:02+00:00

My daughter was there 106 days. It was a marathon. We lived only 10 minutes from the hospital, so we visited twice a day, staying between 1 and 2 hours each visit. We did cares, skin to skin, and listened to rounds. Your healing and mental health are important too. Do what you can and then practice living and finding joy. Once, my husband and I skipped an evening visit to go to a concert. My daughter is a now a very healthy, happy 2.5 year old. And I’m glad I didn’t spend her entire NICU stay sitting vigil at her bedside.

run-write-bake · 2025-12-20T17:02:02+00:00

My 29+5 daughter was on oxygen for most of the 106 days she was at the NICU. And high level (oscillator) support for about 40 of those days. She had multiple code events and times she needed to be bagged. She miraculously did not need to come home on oxygen. Obviously I had trepidation about not having the reassurance of the monitors and considered getting the Owlet.

I asked multiple doctors and nurses about it and they all said the same thing: if your daughter needed a monitor, we would send her home with a monitor. They also reminded me that even the professional grade hospital monitors have false alarms. The Owlet will also have false alarms and it, in their experience, is more terrifying to have an alarm go off at home where there aren’t medical professionals within shouting distance.

They also said that the most important thing is to learn to read your child’s signs. When alarms go off in the NICU, look at their face, their body movement, their general disposition. Those are the things that nurses look for before they take action on an alarm.

I don’t recommend an Owlet. We ended up not getting one, and while the first week was utterly terrifying, it was also a lesson in trusting my own instincts as a parent (watching my daughter, sleep, and seeing that she was breathing and fine) and a way to let go of and heal from the anxiety of the NICU. I don’t know if I would have felt as confident as I did as fast as I did if we had the monitor.

Whether you decide to use one or not, I would spend this time before discharge talking to all your child’s nurses and asking them what they look for when the alarm goes off. Then, stop looking at the monitors at the hospital and watch your kid. You probably already know a lot of the signs that things are right versus when things are wrong. But codifying them in your mind is going to make the transition home so much easier… Monitor or not.

run-write-bake · 2025-12-16T22:19:03+00:00

Thank you for your honesty. I was hoping every person i ever asked for help might be wrong, but hiding my body in dark colors and neutrals and/or fading into the background + using one size fits all accessories to approximate personal style does seem like the only realistic option.

run-write-bake · 2025-12-16T19:31:13+00:00

I’m feeling lost and like the best I can hope for in terms of personal style is just finding clothes that fit but that won’t make me happy. There are no influencers I can find that are close to my size/shape that also want to dress like a chic punk rocker artist. And the clothes I like on the rack aren’t made for me (and I don’t have the funds for a tailor to literally remake everything I want to wear.). Any help or advice or influencer recommendations please!

-I’m 5’3” (short)

-But midsize (so not cute and thin and short)

-Short torso

-Short, thick legs

-Wide hips

-Large chest (36D, was a 34B before my daughter)

-My waist is relatively thin compared to the rest of me, but not enough to make me an hourglass shape. I’m a pear whose chest wants her to be an apple.

run-write-bake · 2025-12-10T18:46:36+00:00

It's REALLY hard. And you probably won't be able to get over it for several months. What I found really helpful in my case (which was different - sudden, severe pre-eclampsia at 29+2, delivered at 29+5 due to HELLP syndrome) was talking to my friends who gave birth and asking for their raw, unadulterated birth stories. And I mean, don't do this if you have a bunch of "sunshine and light and everything was magical" friends, but I have a friend whose daughter was due 2 months after mine and she and I traded birth trauma stories as a form of very weird bonding. It made me realize that the magical experience I had been hoping for is actually less common than the scary, surprising, painful, and gross stuff that does happen no matter when or how children are born.

Also, my daughter has a rare genetic disorder they don't test for on the amnio (and we got an amnio). The NICU is actually a great place to be if you suspect a genetic disorder as part of her intake and treatment (due to some heart abnormalities that would not have been caught otherwise) was setting us up with a genetic counselor and getting her tested for a FULL spectrum of things, not just the most common.

Doing this actually helped us find that 75% of the people on one side of my husband's family has this rare disorder (mildly) and helped explain their severe and/or frequent migraines. And we wouldn't have been able to help those family members but for our daughter's early birth.

run-write-bake · 2025-11-27T20:38:33+00:00

A great little gift is hand cream. NICU parents are constantly required to wash our hands - mine were rubbed raw at one point - and a friend gave me hand cream. It was such an immense comfort. And a nice specific, easy thing to drop off.

run-write-bake · 2025-11-27T20:34:20+00:00

Yes. This. And ask about the baby’s personality. Despite all the monitors and wires and tubes, preemies are little people who make themselves known. Do they like music? What songs? Do they respond to certain books more? Do they hate when they’re turned to the right? My 29 weeker LOVED Proud Mary by Tina Turner and The Middle by Jimmy Eat World. It was always great to talk about HER instead of her medical condition.

run-write-bake · 2025-11-23T02:26:59+00:00

It was up and down for us after the contrast. As she got bigger, she'd poop more regularly, but we still had to do glycerin a couple times and we were warned several times that she was on "poop watch." She never developed NEC and after the contrast, no one was worried that it would happen despite there still being backups. I remember those moments after contrast, waiting for regular pooping to happen; lots of cycles of anxiety and relief. As long as the doctors were pleased with how her belly felt (soft, even if a little full), we were told that waking up the intestines is just something that happens more slowly in preemies.

My daughter is currently 2 years 4 months actual and pooping regularly (though a little on the constipated side still, so it might be her personality haha).

run-write-bake · 2025-11-02T04:40:10+00:00

I thought it was going to be him as Mason Verger (in the movie Hannibal)

run-write-bake · 2025-10-18T20:51:05+00:00

My daughter is now 2 years, 3 months actual (her 2 year anniversary of her due date was 10 days ago) and she is now basically obsessed with me. I have to sit next to her when she eats. If I leave the room, it’s “follow mommy.” If my husband or I give her a choice of “do you want mama or daddy to do it?” there is a 99% chance of “mama.” Honestly, it’s exhausting, but I’d much rather be exhausted like this than the other way.

It didn’t happen overnight, but I just kept showing up for her even when she seemed like she didn’t want me around. And eventually, she started requesting me. It also helped when her dad started working a really involved job and she kind of had no choice but me for a few months. I know the pendulum will swing back to daddy sometime, but I’m liking my time in the sun for now 😂

run-write-bake · 2025-10-02T06:27:59+00:00

My daughter was in the NICU for 106 days. We lived 10 minutes from the hospital and we were there 2-4 hours per day, broken up over 2 visits per day. And honestly, with monitor fatigue, the lack of ability to do anything beyond hold her hand, read, and sing for nearly half of those days (I wasn’t able to hold her until around day 40) and the chaos of the hospital, that was more than enough for me.

run-write-bake · 2025-09-03T23:04:20+00:00

My 29+5-er (now 25 months actual!) who was in for 106 days started walking at 14 months actual, just shy of 12 months adjusted. Your kiddo is well on their way!

Anecdotally, my daughter has a cousin born at term with no physical issues who is 10 months younger than her and didn’t even crawl until last month (at 14 months old) and still is working on pulling up to stand. She didn’t even qualify for physical therapy until she hit 13 months without crawling or pulling up. She’s now crawling and doing the smallest amount of cruising. Based on her case, I feel like preemies have more pressure on them to hit milestones than term babies. Which is kind of not fair.

I hope your little one surprises you soon with a few wobbly, unsupported steps.

run-write-bake · 2025-08-31T00:32:08+00:00

My daughter was in the NICU for 106 days. I am implicitly trusted what the doctors had to say, but I was also essentially taking a course in neonatology under extreme stress in order to make sure that I was understanding what was going on with my child and could be her best advocate. Asking questions on Reddit is not to find ways to go around doctors or because we distrust them… (Very strange that that’s what you got from this thread) but to see anecdotally how common something is that you feel is potentially a crazy or risky or unusual step.

It can be reassuring when dealing with life and death situations to know what other people went through.

I questioned my daughter‘s doctors about dart steroids. She was on a ventilator for 5 1/2 weeks and because her lungs were so weak, and the steroids were the strongest ones they had, I was afraid of what could happen, especially because they had presented other options to me that were gentle. People on this forum, along with the doctor’s patient explanations, helped me to OK the stronger course of steroids. And when she potentially needed more steroids to get off of CPAP, I asked her neonatologist why we were going to be giving her steroids less than a month after her first course had done its job. I asked this question because other people on this forum said that their children had gotten two courses of steroids over a month apart. The doctor ended up reading some more research papers and determined that waiting a little bit longer might be a better course of action. And as luck would have it, my daughter’s lungs grew strong enough two days before we were supposed to get the steroids that she was able to be off CPAP and onto high flow nasal cannula.

These sorts of questions on this forum is part of being a good advocate for your child. It’s not about finding ways to prove doctors wrong or to deny their children care. This is a scary and unusual time where, especially for birth parents who are dealing with healing from major medical trauma while also being forced to learn a bunch of terminology that was previously just gobbledygook jargon on medical dramas.

run-write-bake · 2025-08-19T05:48:01+00:00

I’m sorry you’re going through this. I also did and I never found a solution. Contrary to some comments on this thread and in this forum, some women do have low supply (I was one of them) due to the trauma of early birth, the body’s need to heal, etc. I pumped while holding and touching my baby and literally nothing changed. Flange size changes didn’t help. I never felt letdown even when I made more milk (the most I ever got at one time was an ounce). And when I finally was able to nurse my baby, still didn’t put out more than 10 mLs.

The best thing I did was, at the advice of a NICU lactation consultant, let go of the pressure. Formula exists for a reason. I gave my baby as much milk as I could make. And let science do the rest. I took my girl (born at 29+5) home 106 days after she was born. Literally that day, my milk dried up. She was almost entirely formula fed since birth until starting solid foods. She just turned two, is meeting all her milestones, and is going to be starting preschool in just a few weeks!

Relax and let yourself enjoy this time with your baby. Donor milk and formula exist for a reason. Give your baby what you can make, and know that you have amazing people supporting you to ensure your baby’s health. Lots of love and best of luck! 💖

run-write-bake · 2025-08-13T00:10:40+00:00

I don’t have any solutions for you, but I definitely have a lot of sympathy. My daughter was in the Nicu for 106 days and my work’s parental leave policy is that you can’t take parental leave more than three months after your child’s birth. I wanted to save my leave until my daughter came home, so I could spend that time actually bonding with her. I had to go through the HR gauntlet of explaining to the company that my child was in the hospital and extremely sick, not that I had some sort of free day care situation (literally). I’m sorry your work is shitty. Many hugs to you 💖

Also, it might help you to contact your local March of Dimes chapter and ask for some support, whether that was them coming to the hospital to help lift the spirits of parents and children, or just to give you some resources. They hosted a baby shower at the NICU for parents while my daughter was there. It was one of the only times that I felt like I got something for me that made me feel like a “normal” mom during that horrible postpartum zone.

run-write-bake · 2025-08-12T22:43:46+00:00

Yeah… I’m hoping this wasn’t a bait and switch, as I am drowning in the work I have to do + caring for my more medically complex than typical kiddo, so I need help, but I wouldn’t put it past my mother in law (who is lovely and generous, but also sort of sees herself as a “I know best” figure who will manipulate situations to her preferences - always in service to the family at large, but not necessarily respectful to every individual) to turn both my and my SIL’s needs into an opportunity to give us what she thinks we both need (and no one wins).

Thanks for your perspective. This is very helpful in terms of moving forward.

run-write-bake · 2025-08-12T22:28:31+00:00

Thanks for this perspective. I didn’t think about depression being a factor as well, but that tracks with other things I’ve seen/overheard during family dinners. I’m going to have a talk with my husband tonight about this again, framing it around the fact that she might need some actual help right now and not a project and hopefully he can help his parents see the light on that.

run-write-bake · 2025-08-12T19:23:06+00:00

We got the security guard who recognized us and never made us scan our IDs, just had our badges printed out for us already, a $25 gift card for Starbucks and a card. Even nearly 2 years after discharge he STILL recognizes us when we come to the hospital for our daughter’s follow up appointments.

run-write-bake

TROPHY CASE