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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.

OP's posts:
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Stormy76 · 10/02/2019 13:47

I didn’t take it further afterwards, my parents wanted me to but I was shell shocked by the whole experience and needed medication to help for 18 months and again after my second. I would now not have accepted that kind of treatment but I was young and naive at the time. I do feel that OP has the right to question what’s in her notes because it does seem unfair. Her DH was working long hours and they had another child who needs a lot of support. Her baby won’t be affected at all by the fact that he wasn’t there, Mum was going to visit regularly. I couldn’t spend more than 2 hours a day with my second because I wasn’t up to it, but, as the PICU nurse told me, he was being cared for 24/7. It’s not nice actually sitting beside a cot in PICU, feeling completely useless and at times listening to very distressed parents spending time with their baby who is dying. It’s extremely hard on the parents and perhaps her DH couldn’t cope with that feeling so that’s why he couldn’t go more than once a week.

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HoppingPavlova · 10/02/2019 12:51

Just because he had an “excuse” (for want of a better word) doesn’t mean that the observation should be removed.
Also the comment re being quiet. She probably was. I should imagine a lot of mums in her situation were quiet. It is a very scary and daunting time with a lot to take it.


Precisely. My DH came once a week after being there daily for the initial week. On a few occasions when we were told they would probably not make it through the day he also came in, but in the main it was once a week. He was working in a bit of a unique situation at the time that I don’t want to detail (identifying), 12hr days, 6 days a week, travel time was an hour drive each way to hospital and a toddler that wanted to spend some time with dad each day. We had no issue with it. It was recorded that he visited once a week and what’s more that he was often falling asleep when there (he did find it difficult to stay awake when sitting beside a sleeping baby for a few hours). This is true, what’s the issue with it being recorded? Who cares about the reasons behind it, what way the wind was blowing or who had what for breakfast ffs, they were the facts. It was a situation that we were satisfied with and obviously the hospital had no issue with given there was no intervention in this regard. No big deal.

Buster , not everyone thinks like you. While I can relate not everyone can and there is no right or wrong. My child was operated on very soon after birth. I had a Polaroid from when they were immediately whisked away. Op took several hours. Afterwards the surgeon came to say it was finished and have a chat. At the end I asked how long until we can see them (his large op team was still settling them into the NICU). He was baffled. Absolutely baffled. He said he had given enough morphine so that they would be completely out to it, would keep this up for several days then all being well start reducing it, so maybe come in next Wed, he’ll be taking care of them and he’ll let you know if something goes wrong meanwhile. I said something along the lines of needing to see them and he responded, ‘okay, they don’t need to see you though, completely bombed off their face and will have absolutely no idea you’re there’. He wasn’t on his first day but was an extremely experienced senior surgeon. So goes to show, everyone is different. Very differentGrin. Obviously I didn’t sit at home for over a week occasionally glancing at the Polaroid but went in daily at that point but he honestly would have thought it completely normal if I didHmm. I must admit though having to sit and ‘chat’ with the nurse was exhausting in itself and a chore most of the time. We started with one on one intensive care so there were the two of us sitting there opposite each other for the duration and you do feel the need to make conversation in that situation.

OP, it seems from later posts as though you need some assistance to function properly. That’s expected and completely normal. I understand you are angry as you believe there was medical negligence. No one here can comment on whether that’s the case or not, it requires a medico-legal determination and it seems you are going through this process. What seems to be missing though is you addressing your mental health.

No one goes through NICU with a seriously ill baby and comes out the same. Just doesn’t happen. If someone does then they are probably not normal. In the main, people do need assistance. Even if someone has a baby who is not in a life threatening situation they are surrounded by babies who are and the harsh reality is that a lot of them die. At the point I was in NICU with my baby I had worked in A&E for over 10 years, had been exposed to pretty much everything and had told more people than I could remember that their loved ones, including children, had passed away. Even so, I needed medication after NICU. This was really considered to be completely normal. So I would urge you to discuss your situation, thoughts and feelings with your GP and ask for their assistance.

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Aeroflotgirl · 10/02/2019 12:47

Oh Stormy how nasty and awful, I hope that you lodged a complaint against them. Really some HCP seem to thrive on power and control, and really should not be in tge caring profession. As a baby who was born prematurely years ago, I have no clue if my parents were tgere are not, wasen't aware of that bit of my life!

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Skittlesss · 10/02/2019 10:18

TAke IN NOT IT

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Skittlesss · 10/02/2019 10:17

Stormy, that’s awful. I’m shocked they could be like that with you. You must have felt so poorly at that time too. I totally agree the comment should have been removed from your notes.

However, the comments the OP refers to - not the same - yours was not true, whereas the nurses are correct - her husband DID rarely visit. Once a week, 4 times a month, is very rare. He had his reasons for it, but it doesn’t take away from the fact he only came once a week. Just because he had an “excuse” (for want of a better word) doesn’t mean that the observation should be removed.
Also the comment re being quiet. She probably was. I should imagine a lot of mums in her situation were quiet. It is a very scary and daunting time with a lot to take it.

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Crunchymum · 10/02/2019 10:02

God you are like a dog with a bone @BusterGonad

Maybe you need to leave this alone now?

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Stormy76 · 10/02/2019 09:46

My second was in PICU and DH couldn’t come every day as he had to work. I was reliant on porters to get me to PICU but there were days where I was exhausted and unwell so the staff took a picture of him and a bit of his hair so I could see him whenever I wanted. They phoned the ward with regular updates for me, and to ask the nurses to arrange a porter to get me down to them........they were so lovely and supportive completely different to my first experience where I was treated like shit and received no help at all.

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Stormy76 · 10/02/2019 09:41

I had a similar experience when I had my first DS, he was in scbu and I was warded. I was in agony and treated very badly because I could hardly walk. I was made to get up and was told I wasn’t allowed on the bed until night time. My son was a very big baby, he was over 12lb when we left hospital at 10 days old. The nurses left me holding him standing up, but I couldn’t move I was in agony. Thankfully my dad turned up and took him off me and helped me to a chair, he then got shouted at by a nurse. I got shouted at when at four days old he started twitching his arm, I though it was a trapped nerve from the birth, a nurse came in a asked how long it had been happening I said a couple of mins...maybe five. I was called ‘you stupid girl, your baby is seizing, I can’t believe you have just sat there’ I was 18 years old.
They then realised that both he and I had strep B and that’s why I was in agony, I was told to get back into bed and only to get out for the toilet or the wheelchair to go to scbu. The scbu nurses and ward nurses worked where they were put by the matron at the time.

Mine and my DS notes were left on the end of the bed one day and I read them, they had put in there ‘query maternal drug abuse’ and I went mad, crying because I have never take drugs. My parents were so angry and the matron had to meet with all of us, including the junior dr who had put that in there to explain themselves. It was struck out of the notes at my request.

Sorry that was a long response but basically I would get it removed, because you had extenuating circumstances and they knew that so to write that comment is extremely unfair.

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Youknowmedontyou · 10/02/2019 09:12

@BusterGonad you really are heartless, OP and everyone else here doesn't want to know what a great parent you think you are.

Do the decent thing either leave the thread or stop with the dramas

All I know is that at the shittish time of our lives we both did all we could to see our son, so he'd know he was loved and so he'd hopefully pull through to stay with us and not die.

Your baby wouldn't know you were there, it was the care of the staff that saved your DS, which is exactly what OP was saying. It was medical care not bedside sitting. Your being there made no difference to the child's health.

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TheNavigator · 10/02/2019 08:41

BusterGonad when you are in a hole stop digging. How about you reflect on whether you want to be the sort of person who enters into a competition with someone else who has been in that hopeless and impossible situation, to make themselves feel better? As I hope you are learning from this thread, it doesn't work. I am sorry you went through that, but please don't put other mothers down who are living a completely different life and are a completely different family. It is not a competition, you could empathise with the OP after your experience, not use it to belittle her or her husband.

Peace to all x

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BusterGonad · 10/02/2019 04:10

Pallisers that was how I felt, to me sitting next to him was my way of willing him to live. I don't think that's a rotten statement. In my mind it was the only thing I could do. It was a hopeless and impossible situation.

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pallisers · 10/02/2019 03:59

All I know is that at the shittish time of our lives we both did all we could to see our son, so he'd know he was loved and so he'd hopefully pull through to stay with us and not die.

this is probably the worst statement of all the rotten statements on this thread.

You are saying that the OP and her husband didn't want their child to know he was loved and "hopefully pull through to stay with us and not die" otherwise why post this shit.

you had your experience with a premmie Buster and I'm glad it worked out well for you. But it certainly didn't teach you kindness or empathy.

The OP didn't actually ask for anyone's opinion on her husband. She was posting about the notes on her chart. But by god she got it from sad people who for some reason feel better about their own inadequate selves by having a dig at someone else who is down.

you should be ashamed of yourselves.

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BusterGonad · 10/02/2019 03:07

Youknow What I've been saying is our life was pretty shit too, we didn't have any maternity pay, my husband didn't have a job, neither did I as we had just relocated. He was on supply, we had hardly any money, all his work was an hours drive away and he didn't know if he had work from one day to the next, our life was by no means perfect, in fact at the beginning we even had to go to the bloody job center every two weeks. Our families were an hour and a half away. Almost anything that could've gone wrong did. Yeah we had a car and only one child.
All my points have been about is the fact that I honestly do not think that visiting your sick child once a week is enough, if you go daily as a father you are not a down trodden whimp on a pedestal,what sexist codswallop. And as circle has pointed out all because your baby is in an incubator doesn't mean you don't need to be there for them, nurses are not make do mothers and fathers. It's a well known fact that babies need their parents, to smell them and to feel their heart beat.
All I know is that at the shittish time of our lives we both did all we could to see our son, so he'd know he was loved and so he'd hopefully pull through to stay with us and not die.

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CircleofWillis · 10/02/2019 02:27

OP, my DD was in hospital for 4 months post birth. I found the whole time traumatic and intense. It really helped when I contacted the charity Bliss who helped me accept the limitations of my situation and signposted towards practical solutions for counselling, feeding etc. I attended a Bliss group when I left hospital and that is where I learned how to dress my child for cold weather and what to say to over interested strangers who wanted to touch my tiny baby.

I must say though that I am concerned about the number of people who are saying that there is not much point being next to a very prem baby and that they are like a fish in a bowl. I did kangaroo care for as much as I was allowed. Read spoke and sang to my baby and made sure I was there as much as possible whenever there was an uncomfortable procedure like those awful eye examinations. We were also all shown massage techniques. I was able to comfort my baby through the procedures even when I couldn’t hold her. I also made sure I just touched her on the days I couldn’t do kangaroo care. My husband also did lots of kangaroo care.

By the time my dd was able to leave hospital I was doing everything for her when I was there. The nurses gradually trained us to take over every aspect and we were able to stay with her in a special ward in the week before she came home. The nurses said it was the plan that the parents gradually take over more and more of the care so if they felt you were not following the instructions e.g. feeding on demand rather than on a schedule they definitely would express concern and that would make them scrutinise other aspects of your child’s care that might indicate difficulties in coping.

Flowersfor your terrible experience OP. I hope your DD is doing well now.

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Youknowmedontyou · 10/02/2019 01:35

@Sleeplikeasloth in fairness yours is massively extreme that you are effectively saying that EBF mothers are just not sharing the load..... now that's is very odd indeed!

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Youknowmedontyou · 10/02/2019 01:31

I'll think about it, I'm probably not stood up for because if anyone argues the toss they get it with both barrels.

Nope I don't think so, many people on this thread have argued the toss....I think it was the way you tried to say your situation were akin, when they were poles apart. I think it was the fact that you had so many positives compared to OP and you couldn't say ..... I had it bad, my OH had it bad but with the additional stresses of a disabled child, zero hour contract, no maternity leave and no transport it must've been even more hellish for you, instead you told how fabulous you were and even the staff had to send you for a pub lunch. How many pub lunches did OP and her DH have?

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Sleeplikeasloth · 10/02/2019 01:30

^

BusterGonad, yep...
I agree with your, given others views earlier on this post, so would many others.
I was told much the same, husband on pedestal etc. All it shows me is what low standards many people have for men, where they assume one's that are very involved and attentive are downtrodden.

I'm not sure what is to be gained from this post continuing though, and given anyone that goes 'omg once a week' is jumped on, I think it's reached the point where a sensible discussion is impossible.

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BusterGonad · 10/02/2019 01:14

I'll think about it, I'm probably not stood up for because if anyone argues the toss they get it with both barrels. TBH I've only given my point of view, I've not really done anything terrible but as usual if your opinion is a bit too honest then you're unpopular. I'm not going to lose sleep over it.

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Youknowmedontyou · 10/02/2019 01:07

As I've said, you've not proved popular on this thread @BusterGonad. Think on about how you're coming across?

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BusterGonad · 10/02/2019 01:04

Youknow ha ha. I love it. Over bearing wife. Never before in my life have I been called that. There's a first time for everything. You've really missed the mark with that one but 9/10 for effort.

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Youknowmedontyou · 10/02/2019 00:58

@BusterGonad it's just the impression I get from you... he does this, he is so good, does everything right. It just gives me the impression of a downtrodden man trying to appease the over bearing demanding wife.

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BusterGonad · 10/02/2019 00:57

Tea

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BusterGonad · 10/02/2019 00:56

Youknow may I just ask why my husband is down trodden, subservient and a whimp? I'm intrigued at how you got to this great conclusion. Can you read the leaves or something. This is the thread that just keeps giving.

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Youknowmedontyou · 10/02/2019 00:55

@BusterGonad a lot of people have taken exception to your behaviour on this thread, no one seems to be standing up for you. Take it onboard and learn from it?

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BusterGonad · 10/02/2019 00:38

Down trodden husband. Omg. You guys are real jokers! You've not got a clue. I never said I was a great mother. Not once. If I was that bloody great maybe I'd have had my baby at full term. You lot certainly get heated at a few words from a stranger!

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