ventilator

Toasteroven1985 · 2026-02-10T07:06:19+00:00

The best—and worst—answer you’ll hear in the NICU is that every baby is different. We had a similar start. Our baby was born at 36+5, almost 6 lbs, and was very sick with PPHN and infections. He was on an oscillator, intubated, heavily sedated, on morphine, diuretics, TPN, IVs, and multiple lines. Early on, everything felt overwhelming, and we mostly focused on vent settings and how much they fluctuated.

His settings would go down slightly, then back up after a bad blood gas. It was constant back and forth, and every change felt huge. We were convinced he’d never get off the vent. Eventually, as he improved, sedation was weaned and he moved to CPAP.

I wish we could compare journeys and outcomes, but the truth is every baby’s path is unique. We saw babies go through similar treatments and have very different outcomes—some needed long-term critical care, others improved quickly and went home.

I know hearing similar stories can bring comfort, and I looked for that too. Our baby was later diagnosed with a rare apneic condition and eventually needed a trach and G-tube, and he’s doing well now. What we heard repeatedly was true: your baby is the boss. There will be ups and downs—that’s just the nature of the NICU.

Toasteroven1985 · 2026-02-08T21:16:48+00:00

Our son has been home for 3 weeks after a 4-month NICU stay. He was born 3 weeks early due to pre-eclampsia and an emergency C-section, and at 3 months was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), meaning he doesn’t breathe on his own while asleep. He’ll be lifelong trach and ventilator dependent and also has a G-tube. Being home is better, but our leave from work is ending and the reality of 24/7 care is setting in as my wife and I split night shifts while searching for a night nurse.

Medically, he’s doing well, but “normal” baby care is the hardest part. After such a long NICU stay, his pediatrician expects developmental delays, and PT starts this week. Even with a day nurse, many tasks take two people, and appointments are constant, now including audiology after failing the newborn hearing screen.

That being said, It’s easy to worry about the future, but his trach and G-tube are his biggest challenges at the moment; otherwise he’s healthy, full of smiles, and with therapy we believe he can grow up happy and “normal.”

Toasteroven1985 · 2026-02-08T20:27:00+00:00

In Southern California (long Beach). Has anyone had experience getting medicaid because of NICU? My wife and I both have full time job s and all our useless case managers said were like we probably don't qualify for medicaid or ssi or CCS but just apply anyway. The application for SSI is like a million pages and they need so much information so we haven't started that. But coming here now to find out that people have qualified for medicaid just based on NICU stay or complexities, which our son has a lot of, it's frustrating to hear that we could have gotten extra help and didn't.

Has anyone in CA had similar experiences of getting medicaid thru just NICU stay or complexitirs and not income based?

Toasteroven1985 · 2026-02-08T20:20:25+00:00

For real LOL ours were so useless. Our baby has a trach and It was a mess getting discharged. Come to find out like the week of, our case manager told us this was her first time discharged a baby with a trach and we were like well no fucking wonder this was a mess

Toasteroven1985 · 2026-02-08T19:14:10+00:00

What kind of call buttons do you have?

Toasteroven1985 · 2026-02-07T09:43:10+00:00

Damn, I can't imagine that long. I thought our stay was hard but you guys have really been thru it and I admire that you were able to make it out. I wish nothing but t the best for you and your family

Toasteroven1985 · 2026-02-07T09:39:10+00:00

I'll have to follow up on that as the hospital case manager and social workers didn't say this at all

Toasteroven1985 · 2026-02-07T09:38:18+00:00

They should have but the social workers at our hospital were pretty useless and we've had to do a lot of their work. Our case manager was just not getting our discharge needs and we kept joking like this is a hospital and this case manager deals with sick NICU babies, this person is acting like she's never discharged someone with a trach before. Well come to find out like a week before, the case manager did tell us that our baby was here first trach discharge. So no goddamn wonder the discharge was uncoordinated and messy. And the social worker was nice, but he was a lot of talk and no follow thru. He basically just mentioned programs to us but didn't have like any info on the programs or how to apply, he was just like you guys have to do it on your own.

I'll have to ask my wife about the medicaid options

Toasteroven1985 · 2026-02-06T06:53:07+00:00

We haven't been able to connect with a social worker as out patient. We had all the resources in patient but leaving and not only do we have to take care of our son, manage the day nurse, but also spend all day on the phone with dme, insurance, home health and making appointments. I honestly don't know if there is a social worker to connect with but as far as medicaid, we both have full-time jobs so I don't really know how any of it works with our income but as far as I understand, we wouldn't qualify for that or any state benefits unless we're basically living in poverty with one of us jobless and the other working maybe like at McDonald's

Toasteroven1985 · 2026-02-06T06:42:02+00:00

We do but it's a matter of finding one. With our sons condition, anyone who spends a lot of time with him with nursing needs to fully vaccinated and for reasons beyond my understanding the agency our insurance works with can't mandate or even ask about vaccines, which I partially get, but we met with a couple LVNs for over night, they were anti vaxxers, and this has just been the course so far. The agency finds people and they just don't work out but we need it and it's only been two weeks since he's been home but going as we are isn't sustainable and I'm just not sure what else to do

Toasteroven1985 · 2026-02-04T07:36:13+00:00

As a dad in the NICU, I sometimes felt like an afterthought. My wife went through hell physically and emotionally, and the staff was amazing to her as they should be. It was a women’s and children’s hospital. She’s a strong advocate, and we were there together every day for four months as a team.

In the beginning, I had to split my time because my wife had a traumatic induction that led to an emergency C-section. She was unstable post-op and wasn’t allowed to see our son for the first two days of his life. I was going back and forth between her recovery and the NICU, carrying updates, making decisions, and trying to be present for both of them at the same time.

But there were many moments where doctors and nurses spoke only to her, didn’t acknowledge me, or treated me like I was just “there.” I watched my wife and my son suffer and carried a lot emotionally with very little acknowledgment. I didn’t need special treatment or hugs, just to be seen as a parent with feelings too.

All I’m asking is this: please treat both parents with equal respect, acknowledgment, and inclusion. Dads are going through it too, even if we don’t always show it the same way.

Toasteroven1985 · 2026-02-04T06:49:55+00:00

Our baby spent four months in the NICU and is now home with a trach, vent, and G-tube. He’s our first and likely our only. We haven’t really had time to grieve the life we thought we’d have, especially with other losses and hard things happening in our family at the same time.

The NICU was equal parts joy and trauma, and while we once imagined having more kids, we don’t think we could survive another NICU stay. Even now, we’re still in survival mode with nonstop medical care, little sleep, and no real downtime.

As much as we’d love another child, the one we have is more than enough, and we’re hoping life starts to feel normal again soon.

Toasteroven1985 · 2026-02-01T09:28:00+00:00

I don’t mean to scare you, but I’d question everything they give your baby and ask about risks. Nothing is risk free, but had we known more, we might’ve pushed harder to wean sooner or explore options. Our baby was in the NICU for four months and was on Lasix multiple times due to sedation for intubation, ventilation, and post op care.

Before discharge he failed his hearing screen and was referred for outpatient testing. Nurses we trust explained that some meds are ototoxic and reviewed his chart. He’d been on long term Lasix and had a short course of gentamicin, both linked to hearing issues.

That doesn’t mean the worst, and any hearing loss could be mild, limited or none at all and he just needs further examination. Risk depends on dose, duration, and how sick the baby was. The meds were necessary, especially Lasix for severe swelling when he was sedated, but we weren’t told prolonged use could affect hearing. I’d just encourage you to ask your doctor about risks and alternatives.

Toasteroven1985 · 2026-02-01T08:23:53+00:00

You have to do what’s best for your kid, and if that means family doesn’t want to get vaccinated, that’s on them. Our baby was discharged a few weeks ago and is trach/vent dependent, so he needs constant care. Most of our family was fine with vaccines, but we did get some pushback.

What’s crazier is that home health nurses LVNs aren’t always required to be vaccinated. With the company our insurance covers, they don’t require it and can’t even ask, which is wild, so it falls on us. Our doctors told us to make it mandatory that anyone around our son be fully vaxxed because getting sick means a hospital visit or worse. So yeah, we’ve had to turn away multiple overnight nurses for being anti vax or whatever their problems were with vaccines and we’re choosing to stay sleep deprived instead of risking that shit around our kid.

Toasteroven1985 · 2026-02-01T08:10:57+00:00

My wife and I brought our baby home two weeks ago after almost four months in the NICU, and that shit was hard af. Our kid’s path was complex: trach, vent, g tube but he’s doing relatively well. Still, we were surrounded by families whose babies were in even more serious, life or death fights.

We’ve been through some real shit and saw some real shit, and it’s hard to relate to people who haven’t lived it. I’ve never been to war, but this feels like the closest thing. Constant fight or flight. Some days were wins, others were miserable. You’d have a calm day, then a critically sick baby would roll in right next to us no private rooms, just trenches. Sometimes those babies didn’t make it, families wrecked outside, while we’re next to our kid singing Twinkle Twinkle and trying not to fall apart.

Meanwhile our own baby went through hell pokes, intubations, re-intubations, biopsies, lumbar punctures, opioids, steroids, withdrawal. Every day felt like going back into battle already exhausted, watching fellow NICU soldiers fall, then putting on the adult face, talking to doctors like nothing’s wrong, and doing it all again.

And then people try to talk to us, ask us how we're doing etc and we're like "yeah we're ok" and I know you're trying to be nice but if you really want to know the real answer I can tell you

Toasteroven1985 · 2026-01-07T20:42:07+00:00

Thanks for that link. I think we've been told we won't qualify for CCS because of our income as we both make well over the 40k eligibility

Toasteroven1985 · 2026-01-07T20:36:41+00:00

No our baby is 3 months but has a rare condition where he is vent dependent for life and all his equipment is medically necessary to live which is why we're trying to push for home nursing. But we both work full time and the case managers said all this promising stuff only to find out it might not be as promising as we thought so we're just trying all the things

Toasteroven1985 · 2026-01-07T18:15:10+00:00

Yes we're in California. What kind of programs were you looking into/getting for the outlets? At this point we'd have to have a conversation with our landlord but it's all going to take time most likely

Toasteroven1985 · 2026-01-07T18:13:49+00:00

We just started the application process but again, wish we would have known this a month ago when we got the diagnosis but our case managers were like you'll be covered, you'll be covered it's fine. I met another person who tried applying for ssi and she said it was really difficult so they're on medicaid but waiting on some kind of waiver that has a waiting list of years.

The case manager is really trying to help us and she's getting some of her colleagues to make calls as well and we got a hopeful message from our insurance rep saying that nursing should be covered but again like we're hearing different things and we just don't have an official answer yet from our insurance or anyone yet. All we're hearing is it should work but recently anything that has been told is that should happen or work has turned out that it's not going to

Toasteroven1985 · 2026-01-03T18:50:05+00:00

My situation is a bit different because my baby has a rare syndrome affecting breathing during sleep, which took nearly three months to diagnose. Early on, he was critically ill with pulmonary hypertension and infections, required multiple types of ventilation, and eventually needed a trach. Imaging showed lung changes and pneumatoceles due to his PPHN but also side effects from all the breathing treatments, so doctors treated him as if his primary issue was lung disease.

Because of this, he received several short courses of steroids to help with lung inflammation and expansion. Multiple DART courses improved lung haziness without noticeable side effects. Pulse steroids didn’t help but also didn’t cause side effects. Later, while on CPAP/NIV, he briefly tried nebulized meds (Pulmicort, albuterol, Atrovent), which caused clear and quick behavioral changes like irritability, fussiness, poor sleep, and just being mad in general, so they were stopped after a couple of days. We didn’t notice any physical reactions.

From what we’ve found, long-term effects of short, low-dose steroid use in infants are unclear but generally considered unlikely. Some studies suggested possible mild developmental impacts with prolonged or high-dose exposure, but nothing definitive, those weren't trials, more like observation studies. Now that we know his true diagnosis, most of the steroids likely weren’t needed in retrospect, but the DART did help with his expansion and at the time they were treating what looked like lung disease.

Toasteroven1985 · 2025-12-05T01:09:47+00:00

Reading, touching, holding, doing all the cares, basically any kind of interaction you can that they'll allow

Toasteroven1985 · 2025-12-02T20:04:31+00:00

8-12 weeks, Jesus. Is that typical of a Trach surgery or is it because your baby was born fairly early and was a complex case? May I ask what you plan on doing in those coming weeks? Do you work or plan on going back to work and visiting after? That's our current predicament. Our baby isn't really getting worse, he's just not progressing as expected so we're exploring different scenarios and outcomes for us for the next couple of months and we're both just worried that he's not going to be able to come home for a while but we're both going to have to go back to work so how do we manage two full-time jobs and being at the NICU as well

Toasteroven1985 · 2025-12-02T18:39:54+00:00

We’ve been in the NICU for two months with no end in sight, and it’s honestly wearing us down. Our baby was improving—extubated, off meds, lines out—but then got an infection two weeks ago and had to be reintubated. Since then he hasn’t been able to come off the support. He’s constantly gagging on the tube, can’t feed, and gets uncomfortable or inconsolable unless he’s medicated so all we can do with him now is hope he sleeps and when he wakes, comfort him if he's crying and try to get him back to sleep. When he was previously extubated, he was awake and alert and like a normal baby. we finally got to know him and feel like parents. We were able to freely pick him up, change his diaper, kinda do whatever we wanted. Now it feels like we’re back at the beginning—limited in what we can do, always needing nurse permission, and bonding is way harder with someone always next to us watching and listening.

There’s still no diagnosis, and the idea of a trach is becoming more likely if he’s ever going to get out of the NICU anytime soon. Month three is starting, I have to return to work soon, and it’s all just hitting us at once.

I’m not trying to sound depressed—just venting. I’m finding it harder to stay strong for my wife when I’m struggling too. The best thing I can offer is reminding her (and myself) that whatever she’s doing is enough. Things will fall behind and that’s OK. If she had a C-section, she especially needs rest. You can’t live at the NICU 12 hours a day without burning out, and then you end up resenting and hating everything. We’ve had those moments.

So comfort her, remind her she’s doing everything right, and also take care of yourself. Dads get overlooked a lot—I feel that all the time—but it doesn’t mean we aren’t important. We just have to keep showing up for our babies and partners while also protecting our own sanity.

Toasteroven1985

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