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.

But my brand new born needed me and I wasnt apart from him for months.

how lovely of you. Did you have an older disabled child who was crying for you in a different location?

courch that is the reality for many many NICU babies. Lots of NICU babies have very poorly Mums, some who physically cannot travel to the ward, sometimes in different hospitals! Not all NICU mums have available partners, many have other siblings. It's really really shit recovering from a complex birth sat beside an incubator when you can't lie down or even comfortably sit down for long.

OP.
You were (are!) two loving parents of two small children who both needed you.
To love them, be with them, keep a roof over their heads.
You put your joint efforts into your joint priorities and did a great job.
I am sorry your notes upset you.
HCPs need to be mindful that patients can access records.
I am even sorrier that you have had so many ignorant things posted on this thread.

When my eldest was in hospital, we were lucky enough to get a place in a Ronald McDonald House. Whilst there, we realised how important these homes from home are. We met families who lived 2 hours away from the hospital with other children at home who still needed to go to school etc. No doubt there were other difficult circumstances. Luckily RMH enabled at least one parent to stay close but only bigger hospitals have them.

No-one should judge a family for how they care for a child in hospital. If there are concerns, staff should ask and offer support if needed, not secretly make notes.

OP - I understand how you feel and hope that both of your children are thriving.

And if you're in McDonald's, put some change in the collection for RMHs. They're so valuable for parents with children in hospital.

OP, just wishing you and your family all the best! Ignore the stupid comments on here. My niece was born at 24 weeks and was in hospital until her due date so for 16 weeks. It was a harrowing time for her parents. Part of that time she was in a special unit 4 hours from her home town. Her parents did her best. Her dad is a farmer though and couldn’t just not tend to the animals, paternity leave didn’t really come in to it. He visited when he could but it was far from ideal.
Be kind to yourself. You and your dh have shown huge strength and resourcefulness at a very hard time. I hope that your daughter continues to recover and thrive.

OP I am so sorry that you are having to put up with smug and judgemental comments from some posters on this thread, summed up by the one who asks Is this how it usually works in NICU?. I am quite shocked at how they feel able to criticise you and your DH when you were clearly doing the best you could to care for both your children in very difficult circumstances. Some of them need to read up a bit more about bonding too.

For some contrast, when DD was in SCBU, we had no other DC and were in the fortunate situation of being able to time some of our visits for around midnight when DD usually woke up for a feed. (We were trying to get B/f established.) We were the only parents ever there at that time of night and were obviously intruding on the night staff's cosy routines. One nurse actually said to me one night: "If I had a baby in hospital, you wouldn't catch me in seeing her at midnight...".

Can I echo zampa Ronald McDonald house was a lifeline for us when dd terminally ill in hospital far away from home. Please support them (and sick children trust who do similar).

Op stop justifying yourself to the people on this thread who either can't or don't want to understand your situation. Focus on your little ones and if you are still dewelling on the notes perhaps contact PALs.

@Courchevel Was the baby very poorly and therefore not aware they were left alone?

Yes, it also said in the notes that the op's baby used to stay up late, chatting with the nurses over a hot chocolate, telling them how shit it was being all alone.

FFS, a good majority of judgemental, nasty arseholes on here need to spend one day in the real world. Get your big heads out of your arseholes, give your big heads a wobble and find a tiny scrap of empathy for a fellow human being that found herself in an impossible situation. Think you can do that?

Op, all the best to you and your family, I hope you can find some peace around your daughter's birth eventually. Everything you feel is completely natural and you both did everything you could.

OP I think you are getting a really hard time. I work in child protection and currently have a case in which NICU staff made a judgement about a young mum who had very valid reasons for not being on the ward as much as they wanted (and reality as much as she and I would have wanted for her baby). The treatment and disopraval of this mother has been shocking. I have lost count of 'professionals meetings' they have called where they have demanded the baby is taken into care and senior staff have made totally inappropriate and judgemental statements about a mum who they did not invite. Apart from the fact no court in this land would agree to this child being removed but rather that the family should supported it has transpired she has been given totally conflicting advice from various medical staff which no one will own up to when challenged. This mother has the insight and capacity to be a good parent to a child with additional health needs but is now totally terrified of professionals and as a result represents very poorly because her confidence is so low. Her baby is now home and safe, grandparents there offering loads of support but community staff are looking for their idea of acceptable parenting and I am under no illusion they think I am a crap social worker.

I used to be a nurse and have lots of respect for a number of health professionals that I work with however this is not an isolated occurrence. I worked for a long time on a ward/unit for children with potentially life limiting illness. The judements of parents juggling being on the ward with the sick child (in some cases for months at a time) and their other children whilst trying to make sure the money kept coming in to support a family with the increased costs of constant hospital visiting showed absoulutley no compassion or insight for the family unit as a whole. And these are parents having to live the reality that their child may die

If you are confident you are doing the best for your children as a family within the constraints of your situation then please try not to let this get to you. Accept support (we all need it) if offered. This is a sign of strength as a parent. Also it is totally reasonable to ask the ward, considering their concerns, how they plan to make sure your family is supported.

Courchavel, who do you think will be looking after her disabled child, if op is with baby all the time, and husband has to keep a roof over their head and pay the bills then! Especially as op might not have a support network around her, add the fact she does not drive so makes it very hard. It is insignificant in the grand scheme of the babies life. I was born prematurely and had to be in hospital, have no idea how often my parents visited, and can't remember tgat experience at all, only what my parents told me. Some nasty judgy people on here!

So nicu got your children through, they're alive and thriving and home with you and you are angry at the nurses who helped do that for following protocols?
Suck it up! They had to write what they did it the logs they haven't made anything up they have to write what's happeneing at that time.
Yes your husband should have visited more once a week is a poor show regardless of the excuses you keep listing.
Your all home now settled and well just enjoy your babies and let this pass over you it's gone done and finished.

They said I smelt of alcohol and had noted down that I "didn't know how to settle DD2 (DC3)." This was because she couldn't suck properly and was starving, a fact which was never acknowledged by any HCP.

Wow Mucky was left behind on the empathy train.

The idea of having a second in NICU really scares me and I feel really bad for you OP. With my first I was there constantly though it almost killed me. We had a car though and anyway he was our first so our only priority. Expecting number 2 and I just am so so scared about the same happening again because things would be very different having to stretch yourself between two with conflicting needs.

@willstarttomorrow That is appalling.

Oh bless you, OP, hold your head up high you’ve done nothing wrong.

There were some complications having DS3 meaning we both stayed in the hospital for a week, and at one point the midwife suggested I may end up going home before DS3. I don’t think she expected me sobbing that I didn’t know how I’d be able to come and visit every day around DS1’s school and with my autistic toddler in tow once DH was back at work as neither of us drive.

That's absolutely awful willstarttomorrow and that girl is lucky to have you as her SW. Maybe this post has highlighted a problem? In my other post I wrote that I think it's right for NICU staff to be aware that the difficult conditions of having a baby in hospital may cause parents problems and they should be looking for signs parents may be struggling in some way in order to offer support . I do think this is the case but it seems like there is such a danger of this being turned against the parents. They shouldn't have to feel they are constantly being watched and assessed their every bad mood recorded and held against them. They should feel they are in a safe place where they will be given support and understanding and have someone to turn to if they need some help.
Of course the baby's safety must be a priority but let's not forget there is absolutely no similar scrutiny of parents with a baby born healthy and sent home as usual. Would people be looking into how much time the dad spends with a ten week old baby who was at home? Not at all as long as the baby was safe and well cared for by the mother no-one would say a thing. The HV wouldn't think it a concern.

No no no no NO.
OP you went through hell and back numerous times as a couple and as a family. Negligence in birth and a premature delivery are a tortuous combination- I’ve lived it myself. I felt sick and anxious holding my tiny son and doing tube feeds. I dreaded changing his nappy. You absolutely bossed it, you’re bossing it now. You are understandably hurt by what you’ve seen because you know your reality and how utterly impossible life was. If I were you, I’d ask to speak to someone from Bliss or at the NICU to talk it through and how you feel, and I’d take it up as a complaint if you felt unheard after this. Please give the sanctimonious comments no time of day- I’m appalled people think they have a clue. Especially those who have had a baby in NICU- they should KNOW better than to spout what they’re spouting. Because they weren’t you, their baby’s circumstance was not your baby’s circumstance.
Here’s a shocker for you guys- sometimes babies in NICU are on a different LANDMASS or even COUNTRY to their families. Oh no but the bonnnndiiiiinngg. Please. Bye. Context for a NICU situation -birth, trauma, other children, responsibilities, income, accommodation, transport, recovery, diagnosis of the baby’s current health- is everything!! And that’s what your notes were missing. It’s not wrong to cry about this or to want to talk to someone.

Yesyesyes to everyone sticking up for the OP 👏🏻 Giving me faith in humanity.
OP I’d ask mumsnet to take this down tbh! You don’t need it and it’s not fair.

For those having a go at OP, perhaps take a look at the Bliss website, which is a charity supporting families with babies born "too early, too sick".

It details the financial pressure facing families with a child in NICU.

For myself, that was £8 daily parking, for 3 months. My maternity pay ran out when DC1 had been in NICU for 8 weeks. He remained in for a further 5 weeks. Luckily we had savings & DP was a high earner.

When DC2 was in, I struggled to visit - DC1 was in school nursery for 2.5 hrs daily only, I couldn't drive due to emcs & we had no family support to look after DC2.. I was chucked out of hospital exactly 48hrs after having her. No facilities to stay in. So could only visit a couple of hours a day, between expressing milk & trying to be a parent to DC1.

It was hell on earth trying to juggle it all.

And generally, prem babies just sleep; we were not allowed on the unit past 8pm. I would phone in last thing at night - and could recognise DC1's cry - if the staff were busy no-one could pick them up. Horrific.

- for OP - things often hit you hard emotionally when you get home; take care of yourself.

Wow Mucky was left behind on the empathy train.

probably insufficient bonding with the human race. It seems to be a terribly prevalent problem.

Willstarttomorrow, that is absolutely abhorrent. At a time when families need help and support, they are treated like crap by HCP, back in the day when I was premature, there were set visiting hours for 2 hours, and the nurses Took care of the baby. None of this crap that new parents of sick babies have to put up with.

There is a part of me that wonders whether staffing levels have anything to do with this and whether the pressure is on parents so the nurses do less per child.

Maybe @NicuProblem but its bloody stupid of them especially when they then expect the parents and the rest of the public"s support when it comes to petitions and strikes.

To be fair OP (and I've defended you categorically on this thread so I'm not having a go!!) I think that is dangerous territory.

I always assumed I was encouraged to feed (bolus NG feed) and change baby as I would need to do it at home.... that said we had a relatively short stay and baby wasn't a weeny premmie. I never felt I was asked to do things to take the onus off the staff and the NICU we were in, was very well staffed. I appreciate this isn't the case everywhere but I'd be wary about blaming staff numbers. The idea - at least on my NICU - was to create an environment mother's (and father's) could be involved on their babies care.