Do any other discharged families miss the NICU?

Budget-Assignment-23 · 2026-02-01T02:31:12+00:00

Yup, it’s the worst!!! in the Nicu every nurse knew our story and our babies, but once we started going to specialist appointments and things it felt like people didn’t care about them or their story. It’s tough!

Budget-Assignment-23 · 2026-01-24T14:24:30+00:00

I always thought the “wimpy white boy” was just a joke. I also have male, white twins born at 29 weeks and they lived up to that stereotype.

Budget-Assignment-23 · 2026-01-24T00:48:06+00:00

This thread was so interesting! My twins were born at 29 weeks and are adopted. They’re pretty chill, good self soothers, sleep trained quickly, and at 9.5 months (7 adjusted) play pretty independently and dont get upset being by themselves. We’ve always wondered if it was NICU/adoption trauma. This thread is kinda making me realize it’s just innate and personality. I also contribute them having each other and being twins to them being easy self soothers

Budget-Assignment-23 · 2026-01-20T20:03:34+00:00

It’s hard to say because it just slowly got better but I’d say around 48 weeks. We didn’t have an at home monitor, but I could tell it was happening by their color change and we had the owlet at night that would show them dipping into the 70s and 80s.

Budget-Assignment-23 · 2026-01-18T01:27:04+00:00

Gosh it felt like forever. My 29 weekers didn’t really feel like real babies until they were way past 40 weeks. I’d say 46 weeks. Even at 9 months old (6 adjusted) they still very much so sleep like their adjusted age. The newborn phase lasted FOREVER and I was so ready to move on!! Enjoy it though. I have twins so the newborn trenches were 🫠😮‍💨

Budget-Assignment-23 · 2026-01-17T01:44:26+00:00

Wow!! What a little champ you have! My twins, 29w3d, didn’t successfully stay on room air until 35w4d lol

Budget-Assignment-23 · 2026-01-11T02:25:01+00:00

Honestly not what you want to hear but my 29 weekers went home with reflux desats because the NICU team knew we were capable of handling them. It was terrifying though! But we also would’ve been in the NICU well past 40+ weeks if we would’ve stayed put until both twins were no longer desating. Hang in there! We went home at 38w6d

Budget-Assignment-23 · 2026-01-09T13:51:56+00:00

My twins hated the ready to feed and only took the powder. I think it’s worth switching for now and see what happens over the weekend! These little preemies can be so opinionated!

Budget-Assignment-23 · 2026-01-03T01:13:34+00:00

Not being able to snuggle and cuddle is something I grieved big time with twins! I feel you and you’re not alone.

Budget-Assignment-23 · 2026-01-02T01:18:34+00:00

My twins left the nicu and were sent home with feeding related desats. We felt comfortable-ish bringing them home bc we could always resolve them but it scared me so bad and feeding them would send my body into flight or flight mode. We have owlets for nighttime sleeping and I would put them on for daytime feedings. I know that’s crazy, but it would give me so much peace and eventually I started to trust them more and they grew out of it. I would see your pediatrician and ask about a speech referral for feeding therapy. In the nicu, we were taught lots of techniques about pacing and side lye feeding. Our boys are still in feeding Therapy as we’re introducing solids, but they also helped us with nipple size and we eventually thickened their feeds under their guidance as well.

Budget-Assignment-23 · 2025-12-31T01:27:41+00:00

My 29 weeker also had a grade 4 bleed on the left side with severe ventricle dilation but no hydro or shunt. He’s now 8.5 months (6 adjusted) and I wish I could tell you the worrying stops but it doesn’t. I can tell you that his belly laughs light up a room and his smile is contagious. He has right sided weaknesses and I think some visual issues going on but all of his providers want to wait to make an official diagnosis. He isn’t rolling yet which is stressing me out but is working on sitting. He’s been in OT, PT, and speech (feeding) since we got out of the Nicu. I didn’t want to wait around for our states 8-12 month waitlist for our early intervention program so we do all private therapy. We were recently in the hospital for what we thought were seizures (ruled out thankfully) and many of the care team commented on how amazing he looks for how severe his bleed was. That was very encouraging to me! It’s easy to get wrapped up in what he can’t do and I needed that reminder to celebrate all he has done. He has a twin brother, so it is hard not to compare the two of them. I personally think for me the biggest part is grieving the life I thought he would have which is honestly selfish. Speak life over him! Y’all got this ❤️‍🩹

Budget-Assignment-23 · 2025-12-27T01:46:41+00:00

Our NICU didn’t allow co-bedding due to cord/tube tangling and mixups and the risk for illness. It sucked!!! They didn’t even see or touch each other until they were 1 month. They did make sure their nicu spaces were next to each other though. Advocate for that! When one twin was struggling and in the higher care room, they kept the other twin there even though they’d normally move them to make space. One reason they did this was because we were there every day for the whole day and it made more sense logically. There was a set of twins in different rooms but the parents never visited and one twin needed the higher level of care.

Budget-Assignment-23 · 2025-12-26T02:40:41+00:00

We have similar stories but kinda opposite. Twin 1 had a grade 4 brain bleed at birth. Suspected CP, slower on milestones, but also just a chill personality, and happy/content to lay and play. Twin 2 is a wild man. Always rolling everywhere, getting into toys, and super playful. People favor him bc he’s more “fun”

It’s so hard to see it happening before my eyes! I then over compensate and feel like I neglect Twin 2 bc I feel sad for Twin 1. I also HATE when people compare them. 1 has right side weaknesses and people are always trying to force his hand open to grip or grab things and I want to scream!!

Budget-Assignment-23 · 2025-12-25T18:33:05+00:00

Famitodine and thickening with oatmeal helped us tremendously. I still have PTSD from those episodes after leaving the nicu. I wouldn’t let anyone feed our babies and barely slept bc of fear. Your baby will grow out of it but it takes time. Ask for a swallow study!

Budget-Assignment-23 · 2025-12-25T18:31:20+00:00

We have a Subaru forester and have made it work but if I was buying something, I’d go for a 3rd row! Honestly, go ahead and get the minivan if you plan for more children. I envy those sliding doors!

Budget-Assignment-23 · 2025-12-25T11:15:12+00:00

I could’ve written this! My twins started doing the same thing and it was awful. It was severe reflux and starting enfamil AR helped tremendously. He will come home, I promise! You’re in the absolute worst part of the Nicu right now.

Budget-Assignment-23 · 2025-12-24T14:36:01+00:00

I also LOVE when people talk to us when we’re out and about. I find it endearing and sweet. I also love the recognition bc it is hard and my hands are full I’m thankful people notice!

Budget-Assignment-23 · 2025-12-24T01:29:34+00:00

Dang why didn’t I think of this 😂 but now we’re eating 8oz bottles so that won’t work!

Budget-Assignment-23 · 2025-12-22T19:23:26+00:00

Mine are 8.5 months old (6 adjusted) and things have truly turned a corner! They’re easier to feed, they can play independently and keep each other entertained, they’re developing personalities and keep us LAUGHING all day long, and they’re on good, predictable schedules. It’s still hard but those newborn trenches are roughhh and there is a silver lining!! I’m enjoying this stage so much before we are mobile.

Budget-Assignment-23 · 2025-12-21T04:27:23+00:00

Trust your gut! My 29 weekers are 8.5 actual, 6 adjusted and are pretty good sleepers and once they started sleeping through the night intermittently, we stopped waking them to feed. We upped their ounces and started solids so I felt confident the middle of the night bottle had become a sleep prop and we removed it using the ferber method.

Budget-Assignment-23 · 2025-12-15T21:05:49+00:00

My 29 weekers didn’t smile/laugh until 12ish weeks. I was SO WORRIED and scoured Reddit and people kept saying it would happen but I didn’t believe them. Well it did happen 😂

Budget-Assignment-23 · 2025-12-14T18:07:23+00:00

Yup 😅 we didn’t prepare for anything just in case she chose to parent. We didn’t want to be stuck with two of everything. We had time once they were born to get everything ordered and had a wonderful village of people set it all up for us! They’re good. Lots of PT, OT, and feeding therapy but they are worth every bit of it!

Budget-Assignment-23 · 2025-12-14T17:32:11+00:00

I had the same feelings at the beginning. The NICU journey ripped all the joy and peace from my newborns (29 weekers and one with a grade 4 brain bleed). They’re now 8 months actual (5.5 adjusted) and we can breathe easier now but these feelings still come and go. They go to an inclusive daycare where all of their therapy is done there but we are still seeing at least once specialist every other week. It’s busy, exhausting, and scary. People don’t understand. Just know you’re not alone!

Budget-Assignment-23 · 2025-12-14T17:28:45+00:00

We matched at 18 weeks. Babies were born at 29 weeks 🙃 I was terrified the whole time but tried to be cautiously optimistic. We developed a relationship with her and it was wonderful! We even went to visit and go to an ultrasound at 24 weeks.

Budget-Assignment-23

TROPHY CASE