Suggestions for improvements to an NICU

[Marleysgirl]

Ladies, I'm brain-picking here. I've been invited to join a Parents Forum for our NICU, first meeting next Wednesday (10/02). The aim of the group is to "look at your experience, obtain feedback and identify areas of good practice, and also identify where improvements could possibly be made". It goes on to say that they'll be looking at the "use of generous charity donations to make the unit more family friendly".

I know that you've all be through different NICU (except Shellie who's done the same one as me!), but I'd still be interested in hearing about any comments or suggestions you have to make, as they may be suitable for putting forward for our specific NICU.

Was there anything your Unit did/had that was particularly good?

Was there anything that was really bad? (for example, evening/weekend access to ours was abysmal)

I'm interested in reading all your thoughts!

Thanks.

 

[AP]

Our NICU couldnt have any visitors at all after 10.30 (f i remember) which was crap because OH worked shifts and couldnt see her now and again, which broke his heart.

A bit of consideration for those with shifts might help!?


Things that pissed me off but prob couldnt be much done

• A certain nurse making us feel stupid for asking questions
• Milk going missing and then 'reappearing', its not the first time I've hear its common in NICUs all over!
• Better explaination and understanding of expressing milk. If I knew the implications of missing and being late, I might have done better.
• Some daft registair calling Alex a 'he' when clearly the pink covered incubator said it all
• Arseholes on their mobile phone to people while next to incubators (I actually witnessed one guy hiding behind the incubator)
• Nurses and technology - I cant tell you how broken hearted I was to find that Alex was getting a sleep study yet the nurse didnt actually know she had to put ECG leads on her, which led to us waiting even days longer for Alex to come home.
  I walked in the day she was meant to be getting home, to find the computer and ECG leads on and the sleep study being restarted. I actually walked straight back out in tears.

 

[Marleysgirl]

• Nurses and technology - I cant tell you how broken hearted I was to find that Alex was getting a sleep study yet the nurse didnt actually know she had to put ECG leads on her, which led to us waiting even days longer for Alex to come home.
  I walked in the day she was meant to be getting home, to find the computer and ECG leads on and the sleep study being restarted. I actually walked straight back out in tears.

I hope I haven't upset you by asking about problems you may have experienced

But I can really understand your last point. I had two similar situations.

• Firstly, I'd been geared up for rooming in as Andrew had come off the oxygen (it had been arranged the day before), but that particular day's registrar wanted him to stay connected to a Sats monitor and therefore not actually in the room with me. I fought that by making notes all day of his Sat readings (which were fine) and convincing the evening registrar that nurses could come into my room and regularly check him.
• The second time I roomed in, it was the night before discharge. Everything was on track, we were just proving his bottle-feeding regime. But the next morning he'd lost weight (did a big poop) and had gone just below the golden 2kg limit (1.98kg). I bawled my eyes out, thinking they weren't going to discharge him; and I'm pretty sure they only gave in because I'd got the documentary TV crew there with me.

So perhaps more information is needed prior to discharge on what could delay discharge, so that parents don't get their hopes up too much.

 

[grumpymoo]

More privacy, to have kangaroo care time, plain old bonding time and for breastfeeding.

As long as the staff are very nearby why cant you have some decent time with your baby without every cleaner,visitor etc etc wandering past you.

Continuity of care would of been nice too.

 

[Mumof42009]

Was there anything your Unit did/had that was particularly good?

In icu there was 1 nurse to 2 babies which made sure Adi got everything he needed when he needed it.
I made good friends with 2 of the nurses who i wouldve trusted with my life they got me answers when i wanted them and sat with me when i was feeling down i know its not part of there job but it really helped.

Was there anything that was really bad? (for example, evening/weekend access to ours was abysmal)

When used to ring the door to get in you had to wait a good 5 mins to get in even though there was 5 nurses sitting right at the desk!
When he was moved to the nursery there was very little space and only 1 nurse to 2 rooms most times.
Some of the nurses was really rude at times and never had the time of day for you.
Being fobbed off that Adi never had a milk allergy but every time they gave him formula to top up breast feeding it made him ill, in the end i had to tell them i know my own baby then they agreed to do tests.
Doctors and Nurses need to pass information to each other

Hope this helps x

 

[Laura2919]

I cant say I encountered too many faults but there were a few I can note down.

When the twins were transferred to Kent it was 70 odd miles away from where I lived and there was one nurse there who moaned at me and Mark constantly for having too many visitors and Marks mum and dad didnt like her at all and ended up reporting her to head of department.

When they came to the hospital near me they were doing refurbishment so it was total chaos the whole time they were there and their equiptment was very dated and old. (Although it done the trick). Again there was one nurse who didnt even have a part in caring for either of the girls and on the day they were due to be discharged I had been shopping and Mark was there. When I walked in Mark said that the consultant had been and had a long chat with the nurses and they all agreed that the twins could go home by the end of the week. When I had got in and settled the other nurse came to see me and she said I am worried that you might be taking the babies home early and I am not sure whether they can go!!! I was going mad inside my head so I went and spoke to our nurse who then had a word with this other nurse and I was able to take the girls home.
Had they have needed to stay of course I wouldnt take them but the consultant had already been and told them that the twins werent needing NNU care anymore.

But other than that and them two nurses the staff and hospitals were fab xxx

 

[Laura2919]

More privacy, to have kangaroo care time, plain old bonding time and for breastfeeding.

As long as the staff are very nearby why cant you have some decent time with your baby without every cleaner,visitor etc etc wandering past you.

Continuity of care would of been nice too.

Kangaroo care wasnt 'available' at our hospital because of the refurbishment!
How crap! x

 

[Marleysgirl]

Kangaroo care of the tiny preemie (when still in the ICU end) didn't seem to be encouraged, whereas I gather that lengthy skin-to-skin cuddles are shown to be beneficial. Perhaps they didn't want us staying around the inci's too long?

Oh, I must remember to ask about high comfy chairs for those of us with c/s and babies in inci's. I tried to perch on the staff stools but they weren't designed for comfort; and I could hardly get down & up to the low chairs.

 

[Olivias_mum]

I really appreciate everything the NICU have done and are still doing for my daughter but there are a few things...

Last week the nurse on the morning shift came to speak to me and told me how well olivia was doing,that she was really stable and only in a tiny amount of oxygen (0.03) and that she was ready to have her first bath but as she was about to hand over that i should ask the afternoon staff to show me a bath demonstration...well when the afternoon staff came on i asked the nurse when she could have a bath and she said ''well as her oxygen requirement is so high and she is so unstable i wouldnt do it yet'' ARRRRGGHHH i was so mad!Especially considering this nurse had never even looked after her before and babies were being bathed in 0.50L!!

Being told by a neonatal nurse that ''with everything she has seen if she went into labour at 25 weeks or under she wouldnt even bother going to the hospital and would just stay at home'' OH MY GOD i couldnt believe it, i think she thought that because olivia was born at 29 weeks that i wouldnt mind her saying that to me.

The same stupid nurse who wouldnt bath her and was telling me how unstable she was (i wouldnt mind if she was actually unstable as i would want to know, but she was in a cot in 0.03L low flow,taking bottles and in room 3 (the special care nursery) -anyway the same day as the bath incident Olivia woke up and was really unsettled so i got her out and gave her a cuddle and she fell back asleep on me, the nurse walked in said ''Was she awake?'' so i said yeah she was crying, the nurse walked off huffing and puffing so i asked if there was a problem and she (with a very bad attitude) replied ''You shouldnt be waking her up if she is asleep'' (does she think im stupid)?? Later on that evening i noticed that she had wrote ''Olivia out for cuddles with mum as olivia awake (mum says)'' i was sooo mad!

Thats enough for my rant!There are also lots of lovely, dedicated and amazing nurses on our NICU!

 

[Olivias_mum]

Oh one more..when i mentioned a i really wanted to do kangaroo care one of the nurses said ''why would you want to do that, all this bonding stuff is aload of rubbish and then went off on a rant about how it was invented in columbia to keep babies warm because they dont have incubators and its all aload of rubbish basically!!!

 

[Marleysgirl]

Thanks for that Olivia. Apart from practicalities, the one thing I want to take away from your comments is that we're never really told the staffing structure in NICU and who to speak with if we're not happy about something. Perhaps the Sisters should make themselves better known / more accessible.

 

[Laura2919]

I really appreciate everything the NICU have done and are still doing for my daughter but there are a few things...

Last week the nurse on the morning shift came to speak to me and told me how well olivia was doing,that she was really stable and only in a tiny amount of oxygen (0.03) and that she was ready to have her first bath but as she was about to hand over that i should ask the afternoon staff to show me a bath demonstration...well when the afternoon staff came on i asked the nurse when she could have a bath and she said ''well as her oxygen requirement is so high and she is so unstable i wouldnt do it yet'' ARRRRGGHHH i was so mad!Especially considering this nurse had never even looked after her before and babies were being bathed in 0.50L!!

Being told by a neonatal nurse that ''with everything she has seen if she went into labour at 25 weeks or under she wouldnt even bother going to the hospital and would just stay at home'' OH MY GOD i couldnt believe it, i think she thought that because olivia was born at 29 weeks that i wouldnt mind her saying that to me.

The same stupid nurse who wouldnt bath her and was telling me how unstable she was (i wouldnt mind if she was actually unstable as i would want to know, but she was in a cot in 0.03L low flow,taking bottles and in room 3 (the special care nursery) -anyway the same day as the bath incident Olivia woke up and was really unsettled so i got her out and gave her a cuddle and she fell back asleep on me, the nurse walked in said ''Was she awake?'' so i said yeah she was crying, the nurse walked off huffing and puffing so i asked if there was a problem and she (with a very bad attitude) replied ''You shouldnt be waking her up if she is asleep'' (does she think im stupid)?? Later on that evening i noticed that she had wrote ''Olivia out for cuddles with mum as olivia awake (mum says)'' i was sooo mad!

Thats enough for my rant!There are also lots of lovely, dedicated and amazing nurses on our NICU!

That is bloody disgusting. If she had said that to me i would have reported her. Thats an awful thing to say!

x

 

[alibaba24]

Im pretty new to this with babies in special care but i guess i could list a few things that i wish were different

firstly i want to say They do a fantastic job caring for the babies and MOST of the staff are lovely....

a few things i would like is more privacy especially with bf. I was sitting in a room with my boob out the same room that all the dads come in and out of. Rosalie is currently in with 3 other babies so er....it would be nice to have some privacy

Also depending on what nurse/mw is on they see you coming in it would be nice if they came up to you and just said whats what with her today (most of them do) however iv found myself sitting for quite some time at her incubator until a nurse speaks to me.I dont like wandering into the other rooms to find them out of respect for the parents and babies so it gets a bit annoying... Also i wish all nurses and midwifes would wear there name badges! Im still getting used to everyones name so when you see on the board whos caring for your baby that day and you dont know them and they have no badge you dont know who to ask! iv had a couple of remarks when iv asked a badgless how she is i get the " im not looking after rosalie today you can ask bla bla bla"

sorry if that sounded like a moan i had a slight upset with the mw yesterday too which maybe doesnt help

xx

 

[alibaba24]

Also give parents a PROPER tour of the place not just thats the kitchen" i didnt know we were allowed to take the disposable breast milk tubs until i bought my own!! then they said oh theres a drawer full of them just use ours! be good to know exactly what we can and cant use!

xx

 

[Olivias_mum]

Thanks for that Olivia. Apart from practicalities, the one thing I want to take away from your comments is that we're never really told the staffing structure in NICU and who to speak with if we're not happy about something. Perhaps the Sisters should make themselves better known / more accessible.

Yeah it would be nice to know theres someone you can voice ay concerns to..i think what i was getting at with my little rant is that there you dont have a primary nurse in olivias nicu and so theres no continuity.eg, olivia was desatting yesterday and one of the nurses kept sitting her up to try and bring her sats back up even though i constantly told her she desats more when she sits up, the end result was that she kept desating and needed more oxygen!If she had a primary nurse she would have known that if you just lie her down her sats pop straight back up!x

 

[AP]

Also give parents a PROPER tour of the place not just thats the kitchen" i didnt know we were allowed to take the disposable breast milk tubs until i bought my own!! then they said oh theres a drawer full of them just use ours! be good to know exactly what we can and cant use!

xx

Yup, I had no sodding idea where the room for expressing was for weeks! I was too shy to ask TBH as time went on, one of the mums told me eventually.

 

[AP]

Olivias mum you seen to be having some time with those nurses!

I agree with someones previous comment about the frikken doorbell. I had dashed to the hospital to spend some time with Alex before visiting hours finished but found myself waiting FOREVER to get in, and therefore didnt have much time with her

And I remembered another - I wasnt even told when I could hold Alex, so when a nurse asked if I wanted to cuddle her she looked kinda shocked when she discovered we hadn't cuddle her yet.

 

[alibaba24]

Olivias mum you seen to be having some time with those nurses!

I agree with someones previous comment about the frikken doorbell. I had dashed to the hospital to spend some time with Alex before visiting hours finished but found myself waiting FOREVER to get in, and therefore didnt have much time with her

And I remembered another - I wasnt even told when I could hold Alex, so when a nurse asked if I wanted to cuddle her she looked kinda shocked when she discovered we hadn't cuddle her yet.

Thats what happened to me too!!! It was days and days before i held her because no one said i could!! and she said "oh havnt you had a cuddle yet?" i was like NO1 Told me i was allowed her out the incubator!! again like you mentioned above im also shy so i never actually said can i hold her i assumed if i was allowed to hold her i would be told and offered

xx

 

[Marleysgirl]

And I remembered another - I wasnt even told when I could hold Alex, so when a nurse asked if I wanted to cuddle her she looked kinda shocked when she discovered we hadn't cuddle her yet.

I had that look when a nurse asked if we were doing kangaroo cuddles, and I said that nobody had offered them to date (about two weeks in), we'd only had cradle cuddles till that point. She was shocked that we had done no skin-to-skin (shame there weren't more like her).

 

[Marleysgirl]

I lay in bed last night thinking about all this, and decided that one of the things I'd like to see is the production of an NICU Handbook for our unit. For example, the phone numbers for individual rooms (nursery, high dep) are pinned up on the walls, but you never remember to program them into your phone. Other things I'd want in it are:

• Visiting hours & restrictions (two people max) clarified and reasons explained
• Transport links - details of buses at weekends when the hospital bus doesn't run
• Car parking explained - took us weeks to find out we could get free parking
• Map of rooms in the unit (BF rooms, kitchen)
• Map of local area with bus stops, local shop, cashpoint
• Contact details ("advert") for Counsellor (found this on a wall) and the hospital Social Worker
• Daft things like the staffing structure (what are Registrars?) and the colour coding of the uniforms (dark blue for medical, green for surgical, white for students)

I'm sure I'll think of more, as will you ladies!

Thanks for all your responses so far.