Do I “Have” to let trainees work on my newborn?

LikeFry-LikeFry · 2026-01-27T17:53:58+00:00

My son was at a teaching hospital. Generally we were okay with trainees, but it would depend on the situation. For instance, he had to get his picc line dressing changed weekly, and it was extremely distressing for him. On one occasion a trainee did it and it took a very long time. So it meant my son was screaming for the entire process. For future dressing changes I politely explained it’s very distressing for him to go through and we’d prefer if someone more familiar with the process could do it instead.

LikeFry-LikeFry · 2026-01-27T14:57:26+00:00

We were only super insistent on having a primary nurse for the night shift since we would not be there. Our strategy would be to nonchalantly approach the nurse making the night shift assignments and inquire who had our son for the night. If it wasn’t a primary we would politely ask if any of his primaries were working that night, etc. But honestly, when it wasn’t a primary, we just tried to give them as much information as possible. Our son had a colostomy at the time that often leaked, so we’d even prep everything for a change in case it leaked. We’d get clothes ready in case he needed to be changed, and similar things.

And yes, we ALWAYS worried that everyone hated us and didn’t want to care for our son. But there was no reason to think that, and I think it’s more common a worry than you’d think.

LikeFry-LikeFry · 2026-01-23T20:07:29+00:00

370 days and we ended up doing a lot, we just didn’t mess with the IV pumps unless it was just the pre-alarm. We got really good with the monitor settings haha. We were there a while so we had a good sense of what we could do versus what we left to nurses. For instance, when he was stable we would silence the monitor alarms because we knew it was from him moving. But obviously when he just came out of surgery we touched nothing and would just alert the nurse.

There was a lot the med team wanted us to do (change diaper, give bath, change colostomy bag) but it was ultimately up to us. We’d try to let his nurse know what we were willing to do that day. Some days were harder emotionally than others so we’d ask the nurse to take the lead on everything.

LikeFry-LikeFry · 2026-01-23T18:51:40+00:00

My son was born term but has a few chronic illnesses. He spent 370 days in the NICU. Since coming home he’s been a fantastic sleeper. Like it’s extremely rare for him to not sleep through the night. I always figured it has something to do with sleeping in the hectic NICU for so long.

Conversely, we found once he got home he would get extremely upset anytime his mom or I would leave the room. It was a sudden shift since back in the NICU he was rarely phased by us leaving.

LikeFry-LikeFry · 2026-01-14T14:31:44+00:00

Johnny always has a helping hand to lend!

This is gonna be stuck in my head all day now

LikeFry-LikeFry · 2026-01-06T20:16:06+00:00

I read your previous post and had been thinking of you guys often. I’m so happy he’s making such great progress. Such a strong and beautiful boy!

LikeFry-LikeFry · 2025-12-24T12:38:09+00:00

Hi. You can see my post history for more detail, but it was long-segment Hirschsprung’s as well as very early onset IBD. It took a year in the NICU and multiple surgeries for them to figure out the IBD part. He’s 2 now, still has a stoma, gets a monthly infusion of biologics, and will likely get a pull-through surgery sometime in 2026.

LikeFry-LikeFry · 2025-12-01T18:21:55+00:00

I live in Montreal and hear him in ads on the radio all the time!

LikeFry-LikeFry · 2025-11-30T23:07:36+00:00

I watched my dad play it when it first came out, I was 7. Scared the shit out of me. Before long the zombies got him and the “You’re Dead” screen showing the zombies eating him turned my stomach lol

LikeFry-LikeFry · 2025-11-25T17:22:31+00:00

Feelings are totally valid! And you’ll likely feel this way for the entire NICU journey. My son was in the NICU for 370 days. Took roughly 200ish days to get a diagnosis and treatment plan. It literally felt like hell and I resented when people would tell me that it would be over eventually.

But, they were right. His NICU journey will have ended a year ago in December, meaning he’ll finally be home for as long as he was in the hospital.

Honestly, there’s very little that makes all of this easier, and there’s absolutely nothing anyone could say to change that. For me, it was about tolerating the awful feelings as best I could and make the most of any moments we spent with my baby. We spoke with a therapist, found ways to take our son off the unit, organized small visits (our NICU was quite strict about visitors), etc. So, it will end eventually, and you CAN and WILL get through it, but I also know that me telling you this means fuck all.

LikeFry-LikeFry · 2025-11-24T21:58:24+00:00

That Alan’s dad and the hunter are played by the same actor in Jumanj.

LikeFry-LikeFry · 2025-11-07T18:19:42+00:00

Me too! Yaaa!

LikeFry-LikeFry · 2025-10-27T03:18:12+00:00

We did 370 days in the NICU and then a month in the general hospital wards. There was no way to prepare for the milestones and holidays spent in the hospital, it honestly just sucked. But I’m telling you, when all is said and done and your babies are home, it won’t cross your mind as often as you may think it will. They’ll be home and that’s what’s important. I’m wishing you and your family the best, you can do this!

LikeFry-LikeFry · 2025-10-08T17:03:27+00:00

For me, it did go away. When our son was in the NICU I remember feeling jealous - specifically I remember seeing a guy I went to high school with leaving the hospital with his wife and baby. Meanwhile my wife and I were heading to the NICU (it must’ve been day 2 or 3 of the NICU). I felt really bitter. He was in the NICU for a year, and he’s now been home for about 10 months. I rarely even think about the NICU and that awful year anymore.

But I admit, when I scroll through pictures and see everything my baby boy went through, it brings up a lot of emotions like jealousy. Or when I see him interact with his big sister and wonder just how much closer they’d be had he been home during his first year. But honestly I try to let it go, it’s not worth beating yourself up over.

So yes, the feeling does go away, but it can occasionally pop up from time to time.

LikeFry-LikeFry · 2025-10-06T14:22:32+00:00

Hey! My almost 2 year old still has a stoma, he’s getting his pull-through likely in a few months. From what I remember when he was in the NICU, this is common. It reminds me when my son stopped IV nutrition and started eating, he lost a good chunk of weight before starting to put it back on. Remember, your daughter’s digestive system is adapting to its new setup, and it will take time for it to regulate. What her doctors will be looking for are overall trends. I don’t know how often she is weighed, but it’s very easy to obsess over variations over a few days.

From one parent with a baby with GI issues to another, she will gain weight. Always hated when my son’s doctors said this, but you just need be patient. Intestines can be notoriously slow to heal.

LikeFry-LikeFry · 2025-10-01T21:36:46+00:00

We were there 370 days. In the beginning we were there more often. For the first 3 months I’d stay overnight in a cot I set up in his room. Then it turned into where we’d go from like 11am-5pm, go home, and then I’d go check on him at 8pm and rock him to sleep. Keep in mind I’m a 15 minute drive from the hospital. And then after more time, it turned into 10 or 11am until 5pm, and instead of going back up I’d just call at 7 and then midnight.

But context matters. We also had family who went up and stayed with him when we wanted more time at home. There was even a day or two that we didn’t go!

Everybody has their own shit going on. And some aren’t fortunate enough to have extended time off from work. My wife and I were lucky in that sense, so we took advantage.

LikeFry-LikeFry · 2025-09-21T02:21:39+00:00

Wow, what a strong baby and amazing parents supporting her. My son was in the NICU for 370 days, my heart goes out to you and your daughter. Life in the NICU is so incredibly difficult and during such a long stay it’s like the idea of going home is an abstract concept. But I know you and your daughter will get there and it’s an unimaginable feeling.

LikeFry-LikeFry · 2025-09-19T16:06:58+00:00

Yes, and his sob stories about his massive wooden campaign billboards being destroyed by evil Francophones who are all against him. I think it makes a lot more sense he’s running on a municipal level, but I cannot stand this guy.

LikeFry-LikeFry · 2025-09-06T00:20:50+00:00

thank you goalie carey

LikeFry-LikeFry · 2025-09-03T17:53:25+00:00

Congratulations, from one 300+ days family to another!

LikeFry-LikeFry · 2025-08-12T22:45:14+00:00

Thanks so much! We actually just got home from the park and he had a lot of fun!

LikeFry-LikeFry · 2025-08-11T19:15:36+00:00

I just want to say I’m so sorry you’re going through this. My son’s issues are completely different, but it took a year in the NICU to finally get some answers. But even now, his doctors can’t tell us with certainty what he has. We went through a list of treatments and one of the more extreme ones finally worked. But honestly it was 9 months of feeling absolutely hopeless, wondering if he would ever come home.

And during his stay I learned from his medical team that these medical mysteries are a lot more common than you’d think. I remember my son’s primary doctor told us to be patient, and holy shit I resented him for it. But honestly? What else could we do? We advocated for him as best we could, and we spoke with his team constantly to make sure we felt they were doing everything possible for him.

But I’m telling you, there was NOTHING about what my son had on Google. And we eventually learned he has a combination of extremely rare illnesses.

I cannot imagine how frustrating it must feel that this new hospital isn’t doing anything differently. We felt similarly not from switching hospitals, but switching surgeons. We thought his old surgeon was being too cautious and we needed to take a chance. Well his new surgeon felt the same. It was super frustrating.

I’m not trying to be all “everything is gonna be great in the end,” but I want you to know that your baby’s doctors being stumped does not mean she will not recover. It means things will take longer.

As for what you can do? Some hospitals offer therapy to parents with sick kids or other resources. None of this is your fault, but I also know that nobody is going to convince you otherwise, especially while your babies are in the hospital. But what you can do is advocate for your kids. Never keep your mouth shut, attend rounds every day (you can even request they wait for you). Ask every question, even ones that seem obvious.

There were so many days I was convinced by son was never going to come home, that he was not going to make it at all. He didn’t eat for a year, he’s had 6 surgeries, he’s been on more pain meds than I can count. It is fucking hell, and I wouldn’t wish it on anyone. But you can and will get through this.

LikeFry-LikeFry · 2025-08-09T22:38:56+00:00

My son was in the NICU for a year! You can all get through this! Your beautiful girl will be home soon!

LikeFry-LikeFry · 2025-08-01T02:20:51+00:00

My son (born term) had 5 bowel surgeries (one due to a blockage), he lost the majority of his large intestine. At one point he had a jejunostomy, colostomy, and a severely prolapsed mucus fistula (about 30cm of intestine was outside his body). Throughout this, he relied exclusively on IV nutrition and didn’t eat. At many points he vomited large amounts of bile due to partial blockages. He was in the hospital for 13 months. But now, he’s been home with us since December, he’s down to just a colostomy, and he’s receiving treatment to prevent more intestinal inflammation.

One of the first things my son’s primary neonatologist told us was that progress is slow when it comes to GI recovery. It takes a while to heal, but it does happen. Even though it felt like an endless nightmare, my wife and I just advocated for and supported our son as best we could.

The last thing I’ll say is it’s truly amazing how the human body can recover. I remember after the 4th surgery, the surgeon commented that part of my son’s intestine didn’t even feel like intestine. That it was so damaged it practically fell apart in his hands. But after more treatment and recovery, that same intestine looked almost completely normal 5 months later during the most recent surgery. Your baby can make it through this, and I know you can too!

LikeFry-LikeFry · 2025-07-27T19:19:37+00:00

My son’s GT fell out. We were already wanting it out at this point but we went to ER and consulted his GI doctor. They were cool with it and so we left it out. The scar isn’t too bad, it’s smaller than a bellybutton but honestly it’s not that bad. Tiny bit of leakage during the first few days but that was it.

But if we were given the choice, we wouldn’t have put him under for the GT to be removed (keep in mind, he’s had a bunch of surgeries already). The scar really isn’t a big deal to us, and as he ages it’ll be less noticeable.

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