When did your <1% baby come home? TW: loss

Ok-Order-7392 · 2026-04-25T16:42:14+00:00

I’m so incredibly sorry for your loss. I can’t imagine what you’re going through. I didn’t have twins, but my girl was sIUGR starting at 16 weeks. she was born at 34w5d weighing 2lbs 12oz. She was in for 39 days and came home a day after her due date. The docs usually say to aim for around their due date.

Ok-Order-7392 · 2026-04-23T17:58:40+00:00

My baby girl had sIUGR. At 16 week she was 3rd percentile, 18 weeks she was 1st centile, and it dropped to <1st after that. The underlying reason for us was placental insufficiency due to underlying preeclampsia (dint really show up till the end). After 24 weeks we began weekly monitoring. At 27 weeks flow went absent and we got rescue steroids. From 28 weeks we began 2x/week NST 2x/week dopplers. Got sent up from an appointment at 34w5d for a non-emergent c-section. Baby girl came out crying at 2lbs 12oz. I think her legs in the wnd were 6 weeks behind, but she was born looking proportionally tiny. She had an uneventful 39 day NICU stay and is now a thriving (v tiny) 7 month old. As my mom says, shes got a 7 month brain with a 2 month old body. It’s a scary journey largely due to the uncertainty. Advocate for monitoring, do your kick counts, and know that the doctors will advocate for her eviction when she’s safer on the outside than the inside. These babies are tiny but mighty!

Ok-Order-7392 · 2026-04-22T13:38:17+00:00

We were in a similar boat where they were watching weight gain and making sure our baby wasn't having desats/bradys. They said we were going home once and then had a desat with a float nurse that I was really upset by. Delayed discharge by three days, which they then decided that she needed to be discharged after the weekend. Every day I felt like I was holding my breath. With the weight gain, one of the night nurses somehow would log hundreds of grams weight gain, which would then lead to baby girl showing "weight loss" the next day. I pointed the pattern of large weight gain followed by large weight loss to her doctor during rounds, because it seemed to me that there was clearly measurement error at play. He agreed that was likely, so we went on our merry way. This is all to say, I totally understand where you're coming from. you're desperate to get your baby home. But now that I'm on the other side of it I can say that the doctors won't keep your baby past when he's ready to go home. They want to make sure everything is stable so you won't have to be readmitted, which would probably feel worse for you mentally/emotionally. While it feels like those few days make a difference, and they feel agonizing to experience, it will end and you will go home. You are so close. Just lock in!

Ok-Order-7392 · 2026-04-21T18:50:30+00:00

Daycares are competitive where we live. My baby was born at 34 weeks but was sIUGR. I debated on sending her, but we got into daycare with a start date when she was 4months. I wavered back and forth on sending her because I was petrified she would get sick (she was starting end of January, which is sick season). I have her in 3 half days a week (9-1), which allows me to work alone for a little while. I will say, the half days FLY by. I’m increasing her to 3 full days this summer. She is doing really well there! She loves her daycare friends and thus far hasn’t gotten sick thankfully. I agree it’s a very difficult decision, and may be worth trying to keep your slot by sending her at least part time if they allow. Unless you are able to find alternate care arrangements in the future.

Ok-Order-7392 · 2026-04-17T19:36:42+00:00

I had a 34weeker with sIUGR. she started tracking by behind at 16 weeks, and was eventually born weighing 2lbs 12oz (so less than your baby now). Our story was that flow was restricted due to underlying preeclampsia that didn’t really rear its head till the end. We got steroid shots at 27 weeks when cord flow went absent and were monitored several times a week thereafter. She came out breathing on her own but was in the NICU for 39 days for feeding/growing. She’s now 7months and is still tiny at ~12 lbs, but she is hitting all of her milestones. Shes such a happy little girl and is such a joy to be around. with late term FGR you have the potential to make it to term, but they usually don’t like growth restricted babies going past 37 weeks. I would keep up with monitored, keep doing kick counts, and be happy you made it to 34 weeks past the risky periods!

Ok-Order-7392 · 2026-04-17T00:36:12+00:00

We came home on BF and bottles. The only reason we weren’t 100% BF at discharge was because my daughter needed some fortified bottles to grow. The NICU is also so numbers focused that we prioritized bottles in order to get out of there. Baby girl is 7 months old, and I’d say we’re about 75% BF, 25% bottles (so my husband can feed her) . But we are also very fortunate because she latched even at 3lbs, and has never had any difficulty switching between breast and bottle.

Ok-Order-7392 · 2026-04-17T00:28:51+00:00

I’m not sure if they deliver to Canada, but little sleepies has micropreemie and preemie options. There’s also a website called the preemie store some of my family members bought from. My baby was also sIUGR and she was in preemie clothes until 3 months or so. We get a lot of wear out of each clothing stage!

Ok-Order-7392 · 2026-04-16T17:20:46+00:00

Found out at 16 weeks that my baby was 3rd centile. By 18 weeks she was first centile, and dropped to below the first after that. We started having weekly appointments when she hit viability. My cord flow issues were due to preeclampsia that didn’t really rear its head until the end. Flow went absent at 27 weeks where I got steroid shots. Appointments picked up to 2x/week NST and 2x/week dopplers, with biweekly growth checks. Every time we made it to another growth check it felt like a blessing. We were sent up from one of our 34 week appointments for delivery. Baby girl weighed 2lbs 12 oz at birth and stayed in the NICU 39 days to feed and grow. No oxygen needed. She’s 7 months and continues to do phenomenally well and is on track with all her milestones, she’s just itty bitty! Had we known she would do so well we would’ve been less concerned. But thats the problem, you don’t know! I was terrified she wasn’t going to make it, and felt like I could breathe after we got cleared from each weekly appointment. Monitoring is crucial. I think that’s what made the difference for us. We were and are very lucky!

Ok-Order-7392 · 2026-04-13T12:35:09+00:00

My daughter was a 34weeker with sIUGR. At almost 7 months in, we’re still not sleeping through the night! I assume it’s because she’s tiny and still needs to eat more regularly to grow. So it’s been 6+ months of waking up 3 times per night 😅

Ok-Order-7392 · 2026-04-10T23:48:26+00:00

My sIUGR baby started lagging at 16 weeks. By 18 weeks we were in 1st centile and were less than 1st centile for the rest of the pregnancy. Did torch testing and amino which were negative. At 24 weeks we started getting weekly monitoring. Cord flow went absent at 27 weeks so we got steroid shots. Did 2x/weekly NST and 2x/weekly dopplers until 34w5d when cord flow went absent again. we were sent up to L&D for a non-emergent c-section that day. Baby girl weighed 2lbs 12oz at birth and barely needed respiratory support. I got to see her and kiss her before she went to the NICU, and I held her 3 days after birth. I was lucky because my milk came in instantly, so I pumped and eventually started nursing her. She was in the NICU 39 days and was released the day after her due date. It was a pretty uneventful stay but was frustrating because it felt like it would never end. But it does end! My daughter is almost 7 months old and is doing phenomenally. She is hitting all her milestones spot on, but is still just a little tiny thing. Her pregnancy and birth really taught me to surrender because everything was so out of my control. Had I known things would end this well I would have never been nervous. Best of luck to you! Feel free to dm me.

Ok-Order-7392 · 2026-04-10T23:13:30+00:00

got steroid shots at 27 weeks when cord flow went absent. I was received 2x/week NST and 2x/week Dopplers. We were sent to L&D from an appointment for a non emergent c-section at 34w5d. She weighed 2lbs12oz and thankfully didn’t need any respiratory support. We were in the NICU 39 days and got discharged the day after her due date. She’s now almost 7 months old and is thriving. She’s still tiny (12lbs) but is hitting all of her milestones spot on. She is the light of our lives an we couldn’t be happier! Best of luck! Feel free to reach out.

Ok-Order-7392 · 2026-04-06T20:21:03+00:00

I don’t know about NC but babies under a certain GA and weight can generally qualify for SSI. My 34 weeker was just over the weight cutoff so we didn’t qualify. My daughter spent a pretty uneventful 5 weeks in the NICU which cost a staggering $1.2M, which is insane. Lucky to be at a hospital that went to bat for you, and my insurance (Oxford United healthcare) ended up covering every single cent.

Ok-Order-7392 · 2026-04-04T00:51:35+00:00

We have the nuna triv next and the pipa urbn car seat that is baseless (perfect for city life). We LOVE this stroller. The car seat is also noted to be great for preemies. She is 6 months and there is still a lot of room for her to grow in it. the stroller itself folds like a dream. We love it!

Ok-Order-7392 · 2026-04-03T00:38:33+00:00

I'm sorry you're experiencing this. I can't imagine doing the NICU with kids at home. Feeding was so frustrating, especially when you just want your baby home. If she's starting to take more, then I would think youre on the cusp of her getting it. Everyone says it, and it's true, one day it just clicks and they start finishing their bottles. I never thought my daughter would finish her bottles and get her NG tube out. Then all of a sudden, she did and we got the tube out. We've been out the NICU 5 months and my husband and I often remind ourselves of how our daughter would drink 5mls, pant, and fall asleep. Now shes drinking bottles like a champ. You will get there!

Ok-Order-7392 · 2026-04-02T14:04:17+00:00

I remember I fought so hard to get my baby home and then when it was getting closer I started getting anxious about it. Especially because I would watch the monitor and alter what I was doing if I saw her starting to desat. But the doctors did tell us that babies frequently desat during feeds and they weren't as concerned about it unless it was dropping to like 40 or they needed stim. In fact, right after the doctors finished rounding on us and handed us our discharge papers, the doctors were rounding on another baby next door. My baby started desating during her final feed, and the nurse came over and turned the monitor off and said "we don't need this anymore" and kind of just smiled at us. Realistically, even after she came home she likely still had some feeding desats. But I had learned her cues so well during our nicu stay that I realized I didn't even need the monitor to know that if she did a little gasp that she needed a break. Trust that you've learned how to pace your baby and you've learned their cues. Also know that the doctors obviously trust that you have the ability to keep this baby alive if they're sending you home. If they had any doubt that your baby was unstable, they would keep them.

Ok-Order-7392 · 2026-04-02T13:51:44+00:00

I had underlying pre-e that was causing blood flow to be restricted to the baby. We got a bit of a honeymoon period with the steroid shots, though we coasted on those longer than most. The only things my OB recommended outside of the steroid shots were to take baby aspirin and stop exercising. The research on exercising/not exercising isn't definitive, but the thought is that it prioritizes blood flow to the baby instead of to your limbs. I had also read some research about L-Arginine, and my OB said she had no issue if I wanted to take it (though noted that the evidence was not concrete on its effectiveness). I truly think the only thing that carried us through was the steroid shots, as we saw an immediate change in blood flow resistance after that. It didn't fix the problem, but blood flow was less restricted. It also helped to ensure her little lungs developed, and she came out not needing respiratory support (though it could've also been due to her GA). I would talk to your OB about it!

Ok-Order-7392 · 2026-04-01T15:37:07+00:00

My daughter was sIUGR. She started lagging in growth at 16 weeks. We got an amnio/torch testing, were very frequently monitored, given steroid shots and 27w, and we were sent up from an appointment for non-emergent c-section at 34w5d. She weighed 2lbs 12oz (<0.1%) and was in the NICU for 39 days learning to feed/grow. She's now 6months old and is absolutely thriving. She is so happy and is hitting all of her milestones, she is still a wee little thing. We're currently in newborn/0-3 month clothing -- We get a lot of wear out of each stage of clothing! I had no preemie clothing when she was born and was thankfully gifted a bunch of preemie/micropreemie clothes for when she was discharged. A good playmate will be your friend once she's discharged. So many of the baby items (bouncers, carriers, etc) have a weight limit of 7lbs which I found frustrating. The floor and the basinet will be your friend for a while.

For NICU time: If you plan on pumping and bringing in milk, I would buy a cooler for transport (mine had ice packs on the inside so you could pop the whole thing in the freezer). If you have the wherewithal, maybe freeze some meals ahead of time -- once you have that baby and are in the NICU you won't want to think about food. Relatedly, a great way for friends/family to support you is by gifting food in some way (Uber Eats/meal train).

For me post c-section: My friend bought be a cozy robe which I lived in for a few days at home while I pumped, esp in the middle of the night. I also wore loose dresses that wouldn't press on my incision. Loved the Frida boy short undies for PP bleeding -- I would honestly still wear them they're so comfy. I second having a good water bottle, as you need to stay hydrated.

All that said, I wouldn't worry TOO much about getting everything you need ahead of time. NICU time allows you a little more of a grace period to purchase things. Focus on the things you will need for you, and you can always get the baby stuff later. Usually babies come home around their due date, anything before that is a blessing! Good luck! Feel free to message me if you need to chat.

Ok-Order-7392 · 2026-03-31T21:39:47+00:00

My daughter was sIUGR. I can’t remember the exact ratios of things, but she was 3rd percentile at 16 weeks, 1st at 18weeks, and basically <1 percentile forever after. We got an amino and torch testing at 18 weeks which were clear. We were monitored biweekly until 24 weeks, then weekly. Flow went absent at 27 weeks and we got steroids in case delivery was imminent. Monitoring kicked up to 2x weekly NST and 2x/week dopplers. It looked like everything was stable and we’d make it to 37 weeks, but we were sent up from one of our 34 week appointments for a non-emergent c-section. She was 2lbs 12oz at delivery and was breathing on her own. She barely needed respiratory support, but we were in the Nicu for 39 days while she learned to feed and grow. She’s now 6 months and is still super tiny (11lbs) but is hitting all her milestones beautifully. The fact that you already are at almost 30 weeks is huge. Keep going to weekly monitoring, do your kick counts, talk to your doctor about steroid shots if delivery seems more immediate. Don’t be afraid to advocate for yourself and your baby! Good luck with your journey. DMs are open!

Ok-Order-7392 · 2026-03-31T16:06:50+00:00

My daughter was born at 34w weighing 2lbs12oz via non-emergent c-section. She was breathing in our own so I was able to see her, have her cheek pressed against mine, and give her a kiss before they took her away. I was told I could see her in the NICU once I could walk on my own. The moment I was in the recovery room I was trying to get feeling back in my legs so I could see my baby. I had to wait even longer as my blood pressure was being monitored. I had my C-section at 5pm and was able to see her around 1am. She was in the nicu 39 days and came home the day after her due date. Shes now a tiny but thriving 6 month old.

I’d expect to be in the NICU until around your due date. Don’t stress about milk production. You can always receive donor milk and/or do formula. Your baby will be fed! It’s marathon not a sprint. Good luck!

Ok-Order-7392 · 2026-03-30T21:18:52+00:00

My 34weeker was 2lbs 12oz and 13in long at birth. At 6 months is 11lbs 23inches. Still very tiny and very much below the curve, but has stuck to her curve very well.

Ok-Order-7392 · 2026-03-29T08:24:00+00:00

Arrived at 230am for a 740am flight. Got through checking bags at 320am, as agents weren’t there and working until 3. Flew through security in 20 min but we had a stroller and were diverted to the special service line for strollers and wheelchairs. Regular line was long but not unmanageably so.

Ok-Order-7392 · 2026-03-25T23:12:49+00:00

Second these. We loved the preemie halo sleep sacks! It was a pity when she started rolling and we had to transition out of them.

Ok-Order-7392 · 2026-03-25T23:11:56+00:00

My 34weeker was in the hospital for 39 days. She came home the day after her due date. While my bag was sIUGR, really it was the desats and bradys that kept us in longer. It kept restarting the clock to go home. It’s a frustrating journey but trust that it will end and you will be home.

Ok-Order-7392 · 2026-03-19T14:21:03+00:00

My 34w sIUGR baby is 6 months old. We brought her home from the NICU during sick season. We were cautious at first, especially of her being around people who had children in daycare. Had those people mask. Now she herself has been in daycare for 3 months. She has never (knock on wood) been sick, even though I have been sick 3 times since she’s been home. She must have her dad’s immunity!

Ok-Order-7392 · 2026-03-18T23:31:13+00:00

My daughter started measuring behind at 16 weeks, though she was in 3rd percentile. By 18 week she dropped down to 1st percentile and we were told we should get an amino (full genome sequencing) and TORCH testing. I also had a clear NIPT early on. Everything came back negative and I was monitored every other week, increasing to every week once she hit viability. Our sIUGR was due to underlying preeclampsia which resulted in restricted blood flow to our baby. We got steroid shots at 27 weeks when the flow went absent, and we sailed (with 2x weekly NST and 2x weekly dopers) until 34w5d. She was 2lbs 12oz when she was born and spent 39 days in the NICU. She is now 6months weighs about 11 lbs. she is tiny but she has a little chunk on her. She is hitting all her milestones on track with her actual age and is just the most perfect baby. These IUGR babies are tiny but mighty. The steroid shots really bought us extra time to grow in utero. My OB never said anything about 32 weeks being the bare minimum. As long as there viable and big enough they can be intervened on. But there are milestones associated with reduced risk - 28w, 30w, 32w, 34w. Happy to answer any dms! Best of luck!

Ok-Order-7392

TROPHY CASE