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NICU staff being judgemental.
704

NicuProblem · 06/02/2019 09:31

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.

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ChariotsofFish · 06/02/2019 11:19

I’ve had two babies spend time in NICU, though the first one was only very brief. I remember on his notes it said something like ‘parents asked appropriate questions’, and I thought they were obviously monitoring whether we were competent carers.

I think they’ll also have been thinking about whether the family situation makes it possible to discharge earlier. We took our second home tube feeding, but we were told if we weren’t comfortable she could stay in longer. If your DH had no time to visit and you were overwhelmed coping with a disabled older child as well as a tiny baby, it’s reasonable for them to consider whether the baby might need to stay in longer to help you cope.

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ContessaIsOnADietDammit · 06/02/2019 11:19

if one parent is providing the childcare duties and the other is sorting the financial responsibilities what is wrong with that?

I know a few families where the mother does absolutely everything re childcare and the father does the finances. Invariably those mothers are the centres of their kids' worlds, while the dad seems far less important to them. If they didn't have their mums they'd probably feel like orphans, emotionally, despite bills being paid. I think it's important for both parents to build relationships with their children, where possible, and I imagine that is where the NICU nurses were coming from.

Having said all that, it sounds like it was a very hard situation and I do sympathise with both of you. I'm glad your baby is home safe.

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Crunchymum · 06/02/2019 11:20

@ILoveMaxiBondi

I feel you are being a bit obtuse to be honest. Yes the OPs partner could have come in visit more, but the OP has already explained the long hours / transport issues. To keep lamenting the point isn't helpful.

As I posed earlier, my DP came in maybe 6 times when our baby spent 15 days in neonatal (new job, self employed, had our other kids when he wasn't working to allow me to be with baby).

What is it so hard to understand that not everyone is in the position for both mum and dad to be with baby all the time??

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scaryteacher · 06/02/2019 11:22

I was questioned on when dh would be coming to visit ds when he was in SCBU. I said I had no idea, as I didn't know where he was...much sucking of teeth and frowning. I literally didn't - he was somewhere under the ocean in a nuclear submarine - even when I explained this, I was asked if I'd contacted him to let him know that ds had been born, duh!!

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Raederle · 06/02/2019 11:25

I get you OP. You feel like you were judged at the worst moment of your life when you were doing the very best you could do as a family with all the problems and constraints you had.

You did the best you could. I know i’ve been there.

It’s all very well for people to say well I did this and I did that like it’s some kind of NICU four Yorkshireman sketch from Monty Python, but people do the best they can with what they have.

Seeing it in writing from someone who knows nothing about your life is horrible when you’re at that point in your life.

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PristineCondition · 06/02/2019 11:27

ILoveMaxiBondi you ok hun? your posts are persistently cuntish.

Stop beating you perfect parent drum and go polish that halo hun

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MotherOfDragonite · 06/02/2019 11:33

"It sounds like they have a very limited, normative idea of how a family should function."

This!

OP, I'm sorry you've had such a rough time. It may have been something that they wrote in there as a standard thing, and obviously they decided there was nothing worrying, but I can totally understand your feeling judged rather than supported, I would too.

I did it all as a single mum (not in NICU but generally) -- it's not like families just come in one standard, white, mid-30s, affluent, 9-5 working size. Systems need to accept and acknowledge the whole diverse range.

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allthgoodusernamesaretaken · 06/02/2019 11:33

OP, I wouldn't take this further and I mean this nicely. They entirely appropriately noticed something of concern, kept an eye on it and then realised that it wasn't an issue so didn't take it further. That is their job - staff are hung out to dry when they don't spot a safeguarding issue. They didn't do anything wrong and it isn't personal

^ This

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ILoveMaxiBondi · 06/02/2019 11:35

OP I’m sorry, ignore me. You don’t need to explain any of this to me. You’re doing your best. Hope your DD is doing well now. Sorry for being a knob.

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MoaningSickness · 06/02/2019 11:35

I understand how you feel OP but I really don't think they were judging you or doing this to be mean, or because they thought you were bad parents.

They were doing this because some parents will disengage because they are sliding into mental health issues/failing to cope and they thought it was worth keeping an eye to make sure you weren't in that situation.

The fact that they didn't bring anything up at the time obviously means they decided after monitoring the situation that you were doing ok.

It's much better they pay too much attention to people in your situation then they ignore the couple in dire need of help.

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Herbyvor · 06/02/2019 11:36

It’s all very well for people to say well I did this and I did that like it’s some kind of NICU four Yorkshireman sketch from Monty Python, but people do the best they can with what they haveGrin true.

Get a note out in your file OP, your mental health and recovery is more important than everything else. I was offered counselling after my baby’s discharge from NICU as I felt so traumatised by the experience.

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HoppingPavlova · 06/02/2019 11:37

QueenofmyPrinces , brilliant post, very sensible advice.

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Inaboatwithoutapaddle247 · 06/02/2019 11:38

I feel for you as I've been there myself.
When my youngest was a baby (I also had a sverely disabled 11 year old, a 7 year old and a 2 year old) he had to spend six months of his first year of life in hospital. The first month was spent in intensive care, and then five months on the children's ward.
I visited twice every day (during the day with my toddler and in the evenings with all 3 children in tow).
It was physically and emotionally draining and when I look back I don't know how I did it.
I was also suffering from post natal depression at the time.
I wasn't offered any support or counselling (and to be fair I was too busy making the twice daily hospital trecks to enquire about it).
The hospital staff reported that I appeared "distant" and that they were unsure if my baby knew I was his mum.

I will never forget one evening after I had put him to bed on the ward and was about to leave with my 3 older children, my baby began crying for me.
The nurse picked him up but failed to soothe him.
I said "Here let me try".
I held him and cuddled him and he immediately stopped crying and settled in my arms.
I can still recall the looks of sheer amazement on the nurses faces.
One of them commented, "It seems he just wanted his mum".

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sillysmiles · 06/02/2019 11:42

I'd rather they have actually spoken to me rather than just putting on her notes that I'm quiet and don't interact with anyone and that he doesn't visit. That's entirely out of context and paints a very different view of the reality.

If they were trying to assess the situation objectively then they were right not to speak to you about. If they had concerns they would have spoken to you or escalated the situation. They didn't. They did their job and kept the notes they were required to keep.

I get that it was a difficult time - but really this isn't an issue. Just because you feel like you were being judged doesn't mean you were actually being judged by the staff.

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bubblegumbottles · 06/02/2019 11:43

Please don't take it as some sort of judgement or attack on you. They are just following protocol in the baby's best interest.

We hear too many stories where children are neglected or mistreated and healthcare professionals haven't picked up or documented any 'red flags' or small areas of concern. If you know you are doing the best you can for your child, then you have nothing to be concerned or upset about.
Put yourself in their shoes, they might know your situation briefly, but they don't know you other than that. Imagine if the baby wasn't as lucky as yours to have caring parents that worked hard to provide but were only turning up occasionally because they didn't give a shit? It would be wrong of them not to note anything down.

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WinnieFosterTether · 06/02/2019 11:43

You've obviously had a very stressful time and your emotions are still understandably fraught. The staff were trying to help you and your DD. Lack of interaction could have been a sign of PND; it could have pointed to a need for more support because you didn't have an extended support network; your DH's involvement or lack of it could have pointed to a DV/EA dynamic or a failure to engage with the reality of your DD's needs. In your case, it wasn't any of those but unless they note it, then can't determine when they do need to offer more support/advice, etc.
Have you had any support to help you process your worries about your DD and all the stress surrounding what happened? Flowers

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MRex · 06/02/2019 11:45

I hope both your children are doing well now.

There are some things that medical staff are required to note down, if anything it's just to confirm they've actually considered the relationship. They write something for all parents. As long as it wasn't inaccurate and they didn't cause any issues it's not worth worrying about. If you are very concerned that it could impact something in future then perhaps ask for an explanatory note to be included that you and DH had a disabled 2/3 year old to look after and DH was also working, which limited the visiting time you could spend.

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mrsjoyfulprizeforraffiawork · 06/02/2019 11:45

To those criticising OP's DH - she said that sometimes his shift was 3.00 pm to 1.00 am - this equates to 10 hours on his feet, having to work fast and concentrate properly continually - have any of you had a job like that? Believe me, being on your feet for long hours is EXHAUSTING and you fall asleep all the way home on public transport every time. 6-7 hours' sleep is definitely not enough to sustain this pace of work. I don't think you have any idea just how tiring that kind of work is. Also, if you are continually having to change to different shifts, your body clock doesn't have time to adjust and that makes it even more tiring.

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NicuProblem · 06/02/2019 11:54

We've had no extra support. We're okay now. I did feel at times I may have been developing depression but that was after discharge, and it's gone now. I think it was mainly sleep deprivation because she doesn't sleep well.

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NicuProblem · 06/02/2019 11:55

MrsJoy he also used to regularly get abuse off of drunk customers in the night, and it would make him feel awful.

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TheNavigator · 06/02/2019 12:00

I am sorry, OP, I can see how this is upsetting and some posters seem very judgey and to lack empathy and understanding. If you have never had to spend any length of time in a children's hospital then you are very very lucky. It is the innermost circle of hell.

OP you and your husband can be very proud that you held it together, stuck together and continued to provide the essential love and financial support necessary for your whole family to get through this unscathed. Sadly some people are clueless about the hard realities of families lives - and some of them are medical professionals.

If it would help you, I would write your own clear explanation of that time, noting you were at no time offered additional support and ask for that to be placed on the file as well. Then take a deep breath and let it go.

You and your husband are amazing. You worked together as a team. You made decisions about what was best for all four of you and you came through it. You are worth 100 of the judgy pearl clutchers who would have been there all day every day. Because you actually did it, you didn't talk it, you lived it and it is hard and you made it.

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Raederle · 06/02/2019 12:01

It might be worth calling the Birth Trauma help line. I didn’t have any support through the hospital with DS2 and he had a very stormy start. I ended up with PTSD and didn’t get to grips with that until he was 2 years old.

I had a similar thing to you in my notes and the outrage I felt! I was in my knees trying to cope and it felt like being kicked in the stomach.

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PrivateDoor · 06/02/2019 12:02

I actually think your OH was pretty amazing to keep up that gruelling schedule of work whilst dealing with the stress of a very unwell and prem baby and a disabled and very upset older child. Having a baby in NICU is horrendous and there really isn't much in the way of financial support to help you through. I don't think many posters here have been in your shoes therefore don't grasp just how impossible it is to put your life on hold for months. You still needed to pay the bills, you still needed to meet the needs of your other child and you were dealing with a huge amount of stress in not knowing if your baby would be ok.

I do believe that the staff were probably just following protocol and would be interested to know how it was actually worded in the notes - eg are you sure they weren't concerned for you - I think it is a red flag if a mother is very quiet and doesn't engage and the father is rarely seen. Red flag just means there is a possibility that there is something concerning going on (PND, PTSD, DV etc) however in most cases there won't be. Red flags cannot be ignored however.

I would definitely write to them outlining how hurtful the notes are and explaining that you feel it should have been discussed with you. I agree with pp that you should request that this is placed on her file. I would send a copy to your GP asking for it to go on file there too if you believe any of this was passed to them.

I speak from the perspective of someone who has worked in a NICU and had a baby there (albeit for much shorter duration than yours).

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NicuProblem · 06/02/2019 12:03

Thank you Navigator.

It was the worst time of my life. I've read more now and it's also noted I didn't bath the babies but not noted that they bathed them without telling me usually before I got there. It was also noted I didn't ask when feeds were due which again is because I responded to my babies cues and fed when she needed it and while she was NG fed I didn't want to do the feeds alone and so they'd come in and tell me anyway! They"ve made it sound like I just never spoke to anyone and sat there in some sort of pit of despair which is completely untrue!

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PrivateDoor · 06/02/2019 12:10

I hadn't picked up that you had more than one baby in NICU op. Were they discharged at the same time?

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