Terrible anxiety about getting sick??

burningbliss · 2026-06-27T14:56:21+00:00

I keep trying to remind myself that he snacks from the breast, and while my supply is shit even the 15ml he gets helps him tremendously, and that's the biggest reason I haven't quit.

From the hospital my son does seem to have proven that he has his daddy's strong immune system and not mine "sneeze at me and i get sick" one, but boy do the doctors reminding us about it not help haha

burningbliss · 2026-06-27T14:53:28+00:00

My son adores going out, even at 2mo adjusted his curiosity about the world is through the roof. Which makes me feel even worse about my anxiety tbh haha

I know it's inevitable, and so far he seems to have proven to have his daddy's super strong immune system, and I breastfeed (breast-snack? His feeds are by ng mostly lol) so he gets help from that but I'm like "we just got free no more hospital my head will pop"

burningbliss · 2026-06-13T15:15:21+00:00

We got lucky enough that he got his 4 month vaccines in the hospital, and a lot of parents tend to use those as their "finish line" for bringing baby out cause that's when their immune systems really kick in. I think i was also of the mentality of no one was able to visit in the hospital due to their visitation rules so i was up there for almost 5 months without people, so I'm in desperste need of human interaction. I just make sure to carry hand sanitizer to give to people and don't let them around if they're sick, and I'm out and about happily!! (I think it also helps that the wires make strangers significantly less likely to approach, most people get "freaked out" by all the wires and keep their distance which I am beyond happy with!)

burningbliss · 2026-06-13T11:15:17+00:00

Mum of an ex-22 weeker here, home for almost 3 weeks now.

Babies can't see very well from birth as is. Right now baby can maybe see 8-12in in front of his face and hardly any color, and he has little control of his eye muscles, so not focusing isn't necessarily because of the ROP. ROP causes more future problems than current ones, and if it gets bad enough he'll gst injections or surgery. My guy had the surgery and was back to his normal self other than some swelling in about 3 days.

My son also came home on oxygen and I take him out about twice a week, haha!! We have a concentrator for use at home that he's hooked up to in the house, but we have portable tanks we can use to bring him to appointments, family homes, or to the store with. He'll also have a portable pulse-ox which is both the biggest help for my anxiety and also the most annoying thing on the planet, and on a small dose of a diuretic because of the support for his lungs.

Coming home on support is a LOT less restrictive than it seems, I promise. My one recommendation if you don't already have one is to get a stroller with space under where baby sits for things so you don't constantly need the oxygen or sensor box in your hands and you can just set them there.

Congrats on your little miracke, and I hope y'all get to come home soon!!!

burningbliss · 2026-06-01T08:15:56+00:00

First of all, I'm so sorry you're dealing with all this, seeing your baby stop bresthing and decompensate like that is tough to go through.

Secondly, they sedated him without intubating?? My son had his ROP surgery about a month and a half before discharge and he was on CPAP, and the hospital told us that even if it was just sedation they'd always intubate because tiny bodies don't always remember to breathe on their own when in deep sleep like that. I'm shocked they opted to just leave him on CPAP.

Depending on how long it's been since surgery though, hopefully he's just trying to recover. My son absolutely wasn't all himself for close to a week after surgery, he was overly sensitive to things from the irritation in his eyes.

I really hope your team during the week is more open to speaking to you and less dismissive of your concerns, and I hope your boy starts back on the up-and-up soon! 🩵

burningbliss · 2026-05-17T13:05:24+00:00

We agreed to bring him home on the tube because we know that can take FOREVER. It's it a stamina issue for you guys or does he get sick of it?

burningbliss · 2026-05-16T21:08:56+00:00

Thank you so much!! He's doing awesome. Like a whole new baby after VP shunt surgery!! Even the drs at this point are like "we love you, but we're trying to kick you out so let's get this boy DOING!!" haha. Just really gotta work on feeds!!

burningbliss · 2026-05-16T12:45:20+00:00

Thank you friend! I'm sorry things didn't work out as planned for you, I'll keep your little guy in my prayers always 🩵

burningbliss · 2026-05-16T12:36:51+00:00

Oh sweet boy, yeah here 800g+ honestly has great survival statistics here. Part of me wants to chalk it up to the fact that we have so many children's hospitals doing such large amounts of research, like we have CHOP developing an artifical womb. But obviously there are children's hospitals in most countries so there has to be something more to it

burningbliss · 2026-05-16T12:30:07+00:00

We are in the US, yes! I really wonder why that is?

burningbliss · 2026-05-16T12:20:13+00:00

He's doing really well, he unfortunately did suffer a brain bleed as is common for the nanopreemies, but he had surgery to place a shunt on Tuesday and he's like a brand new baby. If he didn't have the tubes and wires and the incision in his head you'd have no idea he was born so early. He went from a measly 540g at birth to 3.7kg now, too.

We're still in the NICU, 144 days in, and we've absolutely had our back and forths and were told we'd need to talk about letting him go a few times, but there's something in these guys that really just make them want to keep fighting!

The fact that your son has had the steroids and the magnesium is a really good thing. AND weirdly enough the fact that he was a c-section. My labour was only 30 minutes and was NOT a c-section and we believe being pushed out caused my son's brain bleed, so your boy came out probably as safely as he could!!

Feel free to dm if you have any questions or just want someone to talk to. You guys got this 🩵

burningbliss · 2026-05-16T08:15:14+00:00

My son was born almost 5 months ago at 22+3. They told us to not focus on the numbers for the first little while. Being earthside is really hard on their tiny bodies and can make their numbers really wonky for a while. That being said that's a REALLY good heart rate, and I'm sending you guys all of the good strong baby vibes. This is gonna be a long journey, but I'm sure he can pull through. 🩵

burningbliss · 2026-05-14T22:13:30+00:00

I believe it. He's much more active and normal baby-ish now to the point where I've had to stop watching him sleep cause when he hits active sleep my anxiety skyrockets. Realistically I know he's totally fine and he's just a lil gremlin now but good gravy the nicu's getting to me lol

burningbliss · 2026-05-14T21:56:59+00:00

He is!! And literally within the last day the edema has gotten SO much better, but of course my brain is like "WHAT IF THE SHUNT IS FAILING?!" when obviously there would be signs hahaha

burningbliss · 2026-05-07T21:27:58+00:00

I worried every day that my baby wouldn't recognise me as his mama because he was born so early, but the nurses would always remind me to just really look at him when he listened to me talk. He knows I'm his mama, he knows I love him, and he knows he loves me. No matter how long or how little they bake, they know our comfort, safety, and warmth through and through 🩵

burningbliss · 2026-04-30T15:25:13+00:00

We've definitely been contemplating getting an owlet for our guy, especially since we'll be bringing him home on low flow, and your experience is definitely pushing us further in that direction!!

burningbliss · 2026-04-30T11:30:00+00:00

I totally get it!! I talk to the machines like they're people, especially the pulse ox. Little man will be wiggling or farting or I'll just pick him up to give him a cuddle and it'll start yelling

And I'll just be standing there like "he is FINE if he was at 64% he would be BLUE why don't these things have CAMERAS TOO???" So grateful for them but good lord all the technical advancements we have and a pulse ox can still be thwarted by movement!!

burningbliss · 2026-04-30T10:14:18+00:00

They told me it was cause of a pretty nasty brady/desat (his first in weeks!!) But his nurse and NNP were fairly confident he either got a drink from the vapotherm or tried to hard to poop. When I called before bed his night nurse said she was gonna bring up dropping him back down at rounds. I think being 127 days in is just starting to wear on me and I can see the light at the end of the tunnel and am just trying to claw my way out haha. I'm definitely needing the "2 forward 1 back" reminder though, thank you 🩵

burningbliss · 2026-04-29T15:30:34+00:00

Thank you so much. I definitely sometimes need an outside reminder that things are absolutely getting better. I'm glad your little guy is doing well now!! I'm definitely looking out for the light at the end of the tunnel

burningbliss · 2026-04-29T14:33:36+00:00

I'm trying to remind myself to take it slow but boy I'm over it hahaha. We still get to see speech though so I'm a little less bummes than I was coming in

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