NICU staff being judgemental.

[NicuProblem]

I'm in tears. Requested my baby's medical notes after a prem birth. Found a part where apparently they started a visiting log as they felt we didn't stay on the ward long enough, that I wasn't talkative enough and that my husband "rarely visited".

I don't drive and have an older child with disabilities. My husband works and at that time was working night shifts. They KNEW this.

I feel distraught by this notion that at my most vulnerable when I was trying my best I was judged as somehow not good enough.

I can see both sides of this.
My Mum was very poorly when my brother was born, full organ collapse, not expected to last till morning etc.
My Dad's employers said that if he brought a sick note in he could have time off paid. The GP wouldn't give him a sicknote so he had to work while his wife was close to death (she survived) and his son died.

Meanwhile I was 18 months old and he had a mortgage and bills and only one wage coming in. He had no choice but work, they found emergency childcare and he worked 12 hour shifts in a very physical mechanic role before getting me so he could see my Mum. It was horrifically hard. No transport either.

The other side of that is my Mum is a nurse and she has had kids who are dropped off and never or rarely visited.
I can imagine a nurse being worried about a weekly visit of a parent in NICU to be honest. if they were told it was because he was looking after the other child fair enough but being told he couldn't have come because he worked as a waiter would have set alarms and made them wonder why he couldn't come for a couple of hours after sleep. Whether he was going to do the bulk childcare or you were is a bit irrelevant, his child was in hospital and he barely visited. I can see why they concerned BUT mainly from a point that they will have been looking at if YOU had the right support too. Especially if you were going home with a baby who might of needed extra care.

That said it's done with now and you did what you thought was best at the time. I hope your baby is okay.

IF my dh only visited our sick child once a week he would have had a rocket it up his arse. That’s extremely poor form.

I can't see any reasons for concern Op. Everyone has different circumstances that can affect their ability to visit. My ds2 had to spend four days in hospital at one week old due to jaundice. It was really hard work getting to the hospital whilst looking after a toddler. I went about three times a day but the hospital was literally around the corner and that was a struggle, especially as I was getting over a c section.
My db contracted an infection when he was a newborn. My dm didn't drive, I was two years old and the hospital was on the other side of the city. She wasn't able to visit during the week. That didn't make her any less loving or concerned.
I think some people need to try walking in your shoes before they make judgements about how you managed your situation. I'd definitely discuss with the staff to clear the air.

@Snappedandfarted2019

How many babies have you had stay in NICU?

Does your husband have a job? Do you have a mortgage / rent that needs to be paid? Do you have other kids?

As far as I'm aware the OP's baby was in NICU for 10 weeks. I'm sure your husband is allowed to take 10 weeks off.

The OP's husband works in a low paid, insecure industry, without many rights and protections.

Stop being so fucking goady.

I'm aware that this is your first post with this user name and that you sound very upset.

You are also young, your DH is a recent graduate and you have 2 children, including one who is disabled. What a tough situation.

Other posters are right though, concentrate on your family, your children's health and your own mental health.

It’s so hard. I had twins two years ago - one came home after 17 days but the other was in for two months. I could only come in for a chunk of several hours each day once the other twin came home - I was really unwell after my c section with infections, the twin at home was still partly tube fed and I was trying to establish breastfeeding, I was suffering terribly with birth trauma and shock. I don’t drive but would have been unable to anyway. I’m sure they probably did similar for me to be honest.

I tried to time my visits so I was there to try some breastfeeds for him, which had to be done on their schedule. A nurse overheard me saying that I wouldn’t be able to get there for his 8:30am feed and she assumed I meant I couldn’t be bothered to get there early and had a go at me - I explained I actually had another bloody newborn baby at home who also needed to be fed, and if they wanted me to be there for feeds they’d need to change the schedule so I could take care of both my babies. I felt like an absolute piece of shit.

OP you both did what you could while struggling with work, transport and your eldest dc s essential needs. Don't guilt trip yourself at this vulnerable time.
I would be angry too if I was you. Complain in.writing, say you want that erased from your notes.
You can contact PALS (should have leaflets in the hospital) if you want to report poor treatment.

My second DS was born slightly early but had breathing problems so was in SCBU( as it was then) I felt so guilty at neglecting my DS1 who was 3.. so my DH would be the one usually at home with him as I don't drive Luckily the staff were kind and supportive
You do your best you can as a parent but can't tear yourself in two

I would also agree that there are some posters on this thread who appear to have an amazing lack of ability to understand that others' situations may be different.

I'm very happy for all of you where there were two parents and whose financial situation allowed you both to be away from work and at your child's bedside. This is not the case for everyone - families come in multiple shapes and sizes (something we might expect MNetters to understand?).

aah sheltered empathy vacuums
that's the phrase I was searching for!

"Exactly, that’s not night shifts! He could get a decent 6/7 hours in before coming to the hospital after school run every morning"

Yeah cos people who work 9am to 5.30pm are always in bed by at least 6.30pm arent they.

As usual night shift and second shift workers have to fall in with everyone else.

Thanks everyone who understands. I don't think people realise how emotionally draining nicu is when they haven't been there themselves. I'm pretty sure I lived off coffees and dairy milk bars for those 10 weeks. I don't even remember what I did I just survived each day the best way I could.

I'm sorry that some of you think you could have done a better job than I.

There was plenty of time to be made for him to visit more than once as another poster pointed out

Why did he actually need to be there if I was there? No one has been able to give a reason for this.

Obviously he wanted to see her but what is concerning about visiting on his days off? What was she lacking by him focusing on not losing his job? DD slept for most of it.

Funny how you don't answer any of my questions @Snappedandfarted2019 ?

Think you are getting a bit of a rough ride here. Sometimes people don't realise how hard travel is without a car.

The nearest childrens hospital from my house is 1hr 50 mins travel each way (according to google maps and involves at least 2 buses or 2 buses and a train). Add in rail replacement buses and/or roadworks and it becomes a real effort to fit in visiting round a job.

What is annoying me here is that these comments are written as 'observations' but the OP is right, these are not just observations. 'Rarely' is not an accurate scientific observation. It is based on someone's opinion of what 'rarely' is in that context.
OP I would seek someone to talk to at the hospital about this, to help you get your side heard. There might be a Patients association or advocate or something like that.

People have no sodding idea what a long nicu stay is like unless they’ve been there.

Please don’t be upset - it was a factual observation that might’ve indicated that your family needed additional support, but didn’t.

Staff have to log this stuff, because when children are at risk it is often missed because no one has a complete picture - each little bit is dismissed as unimportant and it’s only in hindsight that it’s realised that all the signs were there.

I’ve not had a NICU experience, but I have been a PICU parent. It was definitely recognised that being present on the ward isn’t always possible, but practical support was put in place to make it easier (being able to have the entire family stay at Ronald McDonald House, for example).
It’s a shame you weren’t offered more practical support of this kind, enabling you to spend more time with your new baby, but I’ve seen first hand that so much of these support services are supplied by charities, so sometimes families end up falling through gaps. For example, my daughter’s illness is so rare it’s called an ‘orphan disease’ and there is no tailored support - however, some children’s cancer services do include it (MacMillan) and some do not (ClicSargeant) 🤷‍♀️
No one has time to figure this stuff out when they have a critically ill child!

Hopefully, you will never be back in this situation again, however, if you are, speak to the ward manager for relevant referrals.

Hope you and baby are doing well now x

Oh god it's, hard enough that you have a child in NICU, let alone feeling your being watched and analysed. You have child with disabilities of course you can't stay long, presumably your baby is being looked after and cared for in NICU. I would make a complaint to PALS.

I don’t work in nicu but I do work for the NHS with mothers and babies. I can see why they would have concerns and would want to keep an eye on things. I would be concerned if a father was only visiting his baby once a week. It doesn’t matter that you were there it is about his relationship with the baby and their bond/attachment and commitment to the family. I think nicu staff expect parents to be their doing most of the care in the day, anything that isn’t medical. If you have other children it is obviously harder and more complicated. But if they are recording it is because your behaviour was out of the norm.

I think it's standard to note visits.
DDs notes said if we both visited or if it was just me and also when we phoned to check on her it was recorded.

Oh yes, and you don't drive either, which makes it really hard.

The class bias IS strong on this thread And i will bet a penny to a pinch of shit that a lot of the ones showing this bias voted for the erosion of workers rights that we have now

and while im on the subject hospitals and the NHS in general had better get used to it because when the changes to Pension Credit/Universal Credit come in more family and spouse carers will be forced to look for work and likely end up in low status jobs with no rights so the person they care for could end up in hospital more often.

You vote for it..........you suck it up.

My goodness, thought staff in NICU are meant to do their care, what if their parents aren't there, do they leave them in a dirty nappy. Just seems do big brother like and judgemental, with op not being able to drive and having a CHD with SN at home.