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 think you sound like a fantastic mother, op. You were clearly doing your best in a horrible situation and you should tell PALS how these comments in your notes have made you feel, whether it was standard procedure or not.

FWIW, I haven't had a child in NICU or PICU but my DH was very badly injured a few years ago and was in hospital for 2 months. I visited him every day, but still had snarky comments from a couple of the nurses about why I wasn't there more - at least an hour of visiting every day with 2 small children at home and a job apparently wasn't enough.

DH didn't care and was quite happy so long as he had a charged kindle and I could clean him up after he'd needed the toilet so I could ignore the judgement, but it is so hard when you're very vulnerable anyway and it doesn't get much more vulnerable than your situation.

Maybe they should have asked op and her DH, whether everything is ok, and how the are managing and need support, instead of giving frosty glances and being judgemental. Then they might find out the strains and stresses if op has to go through.

I'm sorry it feels like that, and I'm glad you realise that's not what was intended.

What do you think would be helpful for you now?

If you think it would be useful to speak to someone (about just this or also about the whole birth issue) would contacting PALS at the hospital help? They can liaise and help you find the right person to talk to.

Oh god Bartlett's, your DH is a grown adult FFS! I hope you put them in their place.

I can only echo what Queenofmyprincess said. This is standard record keeping as part of safeguarding, we would be negligent if we didn't notice potential issues that might require ongoing support.
NICU has a huge number of staff and it would be impossible for one member of staff to keep track of parental involvement. If a parent didn't visit all day is this a one off or a pattern? do we need to offer support or not. Are parents struggling and would psychology support be useful? We don't know if we don't keep records so we can see patterns emerging.
Its not personal and its not a judgement of your ability honestly

I can see some sense in being aware that parents not visiting as much as is ideal could cause problems. Its clear that being apart from your baby for long periods for weeks or months might cause difficulties with bonding for both parents and the baby. So it would be a good thing for the NICU to give parents support in this area. Its not that the parents are failing but they are in a situation that could benefit from whatever support can be given. In some areas there may be funds to help those parents with financial difficulties or transport problems. For example my local children's hospital are always fundraising for this sort of thing.

OP says one thing that put her dh off visiting was his anxiety that he might be forced to do something for that baby and end up hurting her. If this concern had been addressed at the time he might have been more comfortable visiting more often and had a better experience, again leading to better chance for bonding.

So I agree with monitoring visits but it must be approached in a spirit of supporting parents rather than judging them.

I had similar sort of problem with my twins. I also had a 4yo at the time. I was in transitional care with my twins so I was technically a patient too.

When paternity leave was coming to an end I asked when we were going to get discharged because I needed to be home to look after my eldest when his father went back to work.

They looked at me like I had three heads, they just couldn't compute that there were people who couldn't just drop their work as they see fit and still be able to pay the essential bills. And they expected every person to have a wide circle of friends and family outside who could also drop everything on demand.

It was awful. Just awful.

Is there a Bliss nurse or Champion on the NICU? If you don't know, then ask. They are specialist nurses or volunteers who are funded/arranged through Bliss the charity rather than being employees on the unit. In my experience they are absolutely brilliant at supporting families and will advocate on your behalf with the unit if you feel the unit isn't being fair.

They can also provide financial support. More info here:

www.bliss.org.uk/

Having a baby on NICU is incredibly hard and trying, there is a level of intensity and emotion there which is hard to describe, and yes, you do feel like you're cutting yourself in half and someone has to miss out.

But you're not alone OP, and you shouldn't be made to feel bad about it.

It was very bizarre. I think they'd just decided that if I was a proper wife I'd want to be with my darling husband all the time he was in hospital rather than keeping everything else going. As DH was very chilled about it all, it became a running joke rather than anything else but that doesn't work for NICU.

Dear NicuProblem,

How old is your baby now? I had nicuproblems myself and several years later reading your situation brings it all back vividly.

I decided to focus my mind relentlessly on dealing with our family situation (once we were all home together) and resist-as far as I possibly could - letting my mind go round and round on the undermining/disempowering and wrong events of those first few weeks. I was as bloody minded as I could be and some previous encounters with CBT and mindfulness helped.

You did the right thing as best as you possibly could have done in a situation which feels fundamentally wrong.

You can take strength from your experience and really solid good parenting. In spite of the emotional pain you can come through this and give your children the best possible loving family life.

I hope this doesn't sound like 'pull you socks up' but more like pull the blinds down on the window with a horrible view.

Best of luck, wishing you strength and love

Firstly I'm glad your daughter is home.

Secondly, I've (luckily) not been in your position. The closest I've been is we got a 2am knock on the door from a police officer "your son has been involved in an RTA", despite being almost outside a general hospital, he was taken to a head trauma unit further away. Things were looking very serious.

I went into coping mode, I was completely calm and refused the offer of a lift to the hospital and calmly and safely drove my husband and other son to the hospital.

My husband went to pieces couldn't drive, could hardly get dressed etc.

When we got there he was having a scan, the paramedic crew had stayed for us to arrive. They explained everything that they knew, that they were not first on scene but they were used because they had the specialist equipment needed to transfer our son. They explained he had been able to communicate, what he said and what had been done on route to the hospital.

I can recall word for word what was said, I took it all in, my husband cannot even remember the conversation.

Thankfully things were fine and he very luckily (police couldn't believe it!) fully recovered.

When relating the events that night the vast majority of people came out and said "I don't know how you drove, listened to paramedics and doctors etc, I would've been to upset, frightened". I too felt judged, I can assure you I was every bit as scared, frightened and terrified as any other mother. My coping strategies are different and I needed to know and understand what was going on, in case decisions needed to be made.

You coped when your baby was unwell as best you could, being vocal, being there 100% of the time you were unable to do, that's no criticism and merely you coping.

I hope you can let this go, it's unimportant and just taking up headspace.

Good luck

I have so much guilt associated with not spending enough time at the hospital with the one who stayed longer. Then shortly after he was discharged he was readmitted to paeds HDU, where I had to stay 24/7 in a chair next to his bed for 11 nights. Then I felt guilty for being separated from the other twin. I can’t explain how hard I found it all but at the time I appeared to be coping well I think. Certainly no one ever asked me how I was coping.

Both of my boys have ASD, one has other conditions too. I spent a long time feeling that they wouldn’t be having these issues if I hadn’t been separated from one or both for so much time. I understand how painful and real these fears are.

Both my DD's have had hospital stays.
dd1 was premature and on nicu for 2 weeks. I was there every day, DH was there on his days off. But we lived close to the hospital and had no other commitments.
Dd2 has had lengthy stays due to CHD. I stayed in hospital with her as she was ebf. DH was on shared parental leave, and we could get a room at the home from home provided by sick children's trust so he was there half the week while family looked after dd1. I felt awful for not seeing much of dd1, she's still affected by it a year later. I had to attempt to split myself in 2, and I just hope when dd1 is older she will understand why I had to prioritise dd2.
This is what our circumstances allowed, we were very fortunate. If we hadn't had the family support DH wouldn't have been there. If dd2 has another lengthy stay, who knows what we'd do.
Op, please try not to feel judged. It's a juggling act, and only you know what is right for your family.

I do find it very sad that your husband only visited once a week. There is no reason why he couldn't have had slightly less sleep a couple of times a week, and gone to see his child before work.

But as you say, what's the point? Well, bonding, and being a part of your child's life. I don't understand why he wasn't desperate to see his child - to the point where he'd just have a bit less sleep sometimes.

You say he's hands on, that he cuddled her 'tefulaely' etc, but that doesn't fit with him choosing to prioritise getting 7 full nights a sleep (a luxury for most new parents) rather than seeing his child, and then bit wanting to care for her when he was there.

And as far as what 'most dads' do, I'm discounting the first 6 months with my child, as he was fully off, but once back at work, he gave her bottles, changed nappy, entertained her, cuddled her, and did 50% of putting her to bed. Then at night, 50% of all night wake ups, night feeds, helped get her ready in the morning. He sometimes shifts his hours round so he can work in the evening and spend extra time with her in the day, and is constantly caring for her at the weekend. He doesn't just parent for a couple of hours a night. And even if he did, that's a far cry from once a week!

I think far too much was on you when your baby was born early, pushing you in too many directions (often literally) which is maybe why you didn't spend as much time by your baby's side as you'd have liked. Whilst your husband was undoubtedly working a full time job for that period, your expectations of his engagement as a father seem quite low, and I think contributed to it being so difficult for you.

Sleep I've never understood the bonding argument. He doesn't love her any less just because he wasn't there every day.

Both DH and I were absolutely exhausted at the beginning. Once his leave ran out I think it's entirely reasonable to only come in on his day off. If he'd been late due to transport they'd have not paid him and cut his hours. DD was cared for and provided for. Surely thats what matters.

I think that's a fairly modern thing that dads do 50% of the parenting. We do share it but I do the majority and I prefer it that way.

I think that's a fairly modern thing that dads do 50% of the parenting. We do share it but I do the majority and I prefer it that way.

It's all very well you preferring to be the primary parent OP, but it will leave your kids somewhat in the lurch if anything ever happens to you.

Your DH visiting only once a week because he was a waiter is concerning. I would've been upset as the mother in that scenario of he could only see his baby in NICU once a week. I've had waiting jobs, the shifts are late but he could've still been there for your child in the afternoons. When DS was tiny he was very poorly and DH didn't want to leave his side. On the occasions he was popping out to get things we need or to get me fresh clothes from home. I stayed in with him and DH stayed until around midnight each night and was back before 7am, when he had a bad few days DH stayed in too, the staff offered when they see it was killing him to have to go, even though it's usually only one parent allowed to stay. I'm glad it says in my notes that we were concerned and attentive parents and that when we were being released as mum it says I had very strong support from DH, but we showed them that. Weekly visits do not.

*saw

Ok, if you dont understand why being by your child's side is necessary for bonding, why did you bother going?

Why do we bother spending time with children at all? If all that matters is their physical needs are taken care of? If someone is a single parent, then if course they can do all of the nurturing side, but where someone has a second parent thst doesn't put themselves out to be at their sick child's bedside, then I think it's a real shame.

And I'm not buying the 'what if the bus didn't turn up' line. I don't drive either. Never have. Whilst it takes longer to get to places, it's not some kind of impossible barrier. I am very, very rarely late to work (as in about every 2-3 years, am late once) and work in lots of different places, some with terrible transport links. I've trudged down the road at 4.30am, to get 3 trains, to get somewhere for 9. A regular trip of mine involved a walk, train, 2 buses and a boat!! So I do t accept that he couldn't have gone, in case he'd have missed a bus.

He choose not to go. And yes, I can see why that would be a concern to staff. Not just for his bonding, but for concern about how engaged he would be once baby came home.

Sleep because I'm her mother and she needs parental support. That doesn't necessarily have to come from both people all of the time. Sometimes one parent can do one thing and another a different thing. DH was supporting her financially.

Right so if he finishes at 1am gets in at 2, bed by 2.30 wakes up at 8.30 out the house by 9 takes about an hour depending on transport so there by 10, half an hour walk to hospital so 10.30 for him to start at 12 gives him half an hour and that's assuming all transport lines up...

but for concern about how engaged he would be once baby came home
How is that anyone's business? As long as our set up works for us and no one is coming to any harm why does it matter who does what?

Then he does what all new parents have to do, and sleeps less! Two nights a week, he gets an hour less sleep, and then he can spend an hour and a half.

Seeing her once a week is shocking. I'm sorry, but how can they possibly bond with eachother with such meagre contact?

Sleeplikeasloth

Seriously, what is your problem. Can you not see that your experience of public transport is of no relevance to this situation. Try walking miles because of a missed bus after a 12 hour shift. Anyway the likelihood of being let down by public transport might not be too great (not in my experience though) but if it's the difference between being 'let go' from your precarious job situation and endangering your whole family then it's pretty bloody important. We all respond differently to traumatic situations and I really don't think it's unusual to respond like the OPs DH, to feel overwhelmed and to feel the need to do what was practically necessary for the whole family. I'm genuinely shocked by the judgement here about that.

I wonder OP if you've not really dealt with the trauma of a poorly baby, long NICU stay etc and this is a push over the edge and as such it feels much more important than it is?

It just feels like I was being analysed well they're hopefully at the point looking towards you going home with a vulnerable baby. Possibly one on a feeding tube, o2 or other medical complications. I don't think it's about assuming you're crap, it's about recognising that you're at more risk of PND or PTSD, that not all partners are supportive and that you'll need more support if he isn't giving it.

You've read into the comments about time in ward and interaction with your child as "sneering", a class issue, you being a crap person, you being a crap Mum, your partner not caring. You're massively projecting. If they thought you were a bad Mum they'd have social services involved.

Please be kind to yourself OP

Also, you said he often started at 3, not 12, so he would certainly have had time on those days he started later.

Seeing her once a week is shocking. I'm sorry, but how can they possibly bond with eachother with such meagre contact?

So what about those fathers who are on deployment when their baby is small. Or who work such long shifts that they're only around for a bit at the weekend. Or any of the many situations that so many people here are too privileged to imagine.