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The smell of the hand sanitiser, the contstant alarms going off (from your baby and everyone else's), learning how everything worked, becoming a pro at nappy changes around ventilators, then o2 tubes, heart montiors, NG etc...the pain of not being able to hold your baby, just to sit there and will them to get better, sometimes getting to stick a hand in the little window and hold their hand. getting booted out for doctors rounds, waiting and wondering what they were saying about your bub. SO SO much, mostly bad, but some good memories (going home the best of course) It still pains me to think about it and we are almost 3 years free of the NICU.....
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Lou... i agree your care has been despicable and unconscionable......there are no excuses for the appaling way you have been treated.... i hope you are writing it all down and when things have settled i hope you will take things further...my heart breaks for you hun....I am sorry if my post appeared to minimise your experience, that was not my intent...I think I was just trying to make bit of sense of my own experience is all....
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Not at all Mel. I beloved there is much truth to your post and know staff and parents find times difficult to communicate. I have worked it so I know but I also wanted to make point that this then falls to the training and education dept of the hospitals to manangement this and to ensure effective communication and support for both staff and ppl accessing the service.
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totally agree there Lou....my mind has been going over these past few days, especially as we will have to go to Jesse Mac for number two due to my issues and our choice of obstetrician.....also knowing that it is a 100% certainty no.2 will have to go to SCN I have benn thinking how do I/WE/THEY/US make it better next time...better communication and training is i think a big key....just as well i havent filled in the feedback forms yet....i have a better idea of what i want to say in a constructive way now...
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Totally Mel. I know I would only go back with my ob after going through this and if that means returning to the same hospital then that too I am ok with. What happens today may not happen tomorrow but could somewhere else. What I am trying to insure is that they are now going to work on continuous improvements. After all we can only do this with both positive and negative feedback and I will be providing both fairly.
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My strongest memory is the smell and sounds.
My sweetest memory was when Isaac was so sedated we weren't eeven allowed to hold him and I was to scared to do anything but stare at him.. Dh happily got up took his temp, changed his nappy and all those other little things. He would also very confidently feed Isaac through his tube. I was way to scared to do any of that..
Isaac was a 37 week baby weighing in at nearly 10lb. Born perfectly healthy. 12 hours later he stopped breathing and started having seizures. We spent 16 days in the hospital and while that is short for some I swear it was the longest 16 days of my life. To this day they are still uncertain as to what was wrong, only explanation was a possible lack of oxygen just before birth..
ETA: Jacob and Olivia also spent time in the SCN, but we also felt better as it was so familiar. With Jacob though we were not expecting it so of course we cried a lot. With Olivia they told us before she was born she would be sick (she proved them wrong and only spent one full night in there,)
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Now that I have more time - the memories that stand out to me the most...
Being wheeled into SCN to see Sam for the first time after birth - and being encouraged to put my hand through the window of the humidicrib to touch his foot. But I was still too weak to stay long, even in a wheelchair so left pretty quickly.
The second time I was able to visit SCN, again in a wheelchair (I have no idea why birth knocked me about so much - I only had gas, no epidural, it was relatively short but I was still barely able to walk 24 hours later), to find Sam out of the humidicrib and swathed in blankets with a singlet on his head as a makeshift hat... and getting scowled at by the nurse for reaching to touch him. Asking if it was ok if I picked him up and being told no.
The next morning when we were finally included in caring for him and were taught how to change nappies and give bottles. And I loved the nurses that would let me hold the syringe when he had tube feeds!
The one time we were actually able to get Sam to attach to the breast and suck properly - for all of a minute.
The time I was woken in the dead of night by the phone call telling me it was time to come into the nursery for a feed and walking in to be told as though it was no more important than the weather outside that my baby had stopped breathing and had turned a funny colour. This happened another three more times until we finally figured out that it was because his NG tube was too short. But it was a very scary couple of days.
The heart-wrenching crying babies were given heal-***** tests or new NG tubes...
And finally being so flustered and excited when we finally got to take him home that I left important stuff behind - like his bottle (and the formula they gave us to get us through the rest of the day while we bustled about trying to get our last few things sorted) and his blue book and needing to make three trips back to the hospital after we left to finally have everything!
BW
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It appears that Mel and Lou you are/were at the same hospital as I was, when Matilda was discharged I said that I would never go back to that hospital due to lack of compassion/care, I made complaints which was met by the usual apologies and as it was my second was also sick and so back I went with all the promises in the world unfortunately for me, the second time was worse, this time I will stick to my word, I will never go back to that hospital.
Last edited by DaintreeDream; August 29th, 2010 at 09:51 AM.
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Girls, I'm so sorry that you have endured such horrible care, at such a sensitive time
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Sam was full term IRDS (Infant Respiratory Distress Syndrome) as well. He looks so big compared to the other babies. I couldn't see his face at all for the first week. They had like an ice cream container with a big hole cut in the side and 'drapes' over that part to keep the oxygen in. I swear they waited for me to leave to do anything they had to take it off for. I will give them some credit that when he changed rooms and I could feed him they woke me up every other hour to go give him a feed. Nepean NICU has a couple of stay rooms for parents, so I didn't have to leave without him. I will say I was probably lucky though as there were not many babies, and in the room they get moved into for basic observation he was the only baby there so I got to have a ridiculous amount of bonding time with him without getting in anyone elses way.
They were pretty good up at the ward though. They put me in a room with another NICU mum so we were not surrounded by other new mums and their beautiful babies.
All in all, its an experience I am more than happy to leave as a one off!
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I was going to reply with a similar thing. I cannot fault the care both mine received in KEMH Perth. I only had a run-in with one nurse who continued to try and take blood despite the fact she hadn't given enough surcrose, but she was only a trainee. I was only ever asked to leave twice... once when the trainee took blood and a second time when a lil one grew wings
Girls, I'm so sorry that you have endured such horrible care, at such a sensitive timeHe was home on day 9 and discharged completely day 11. I was getting really ****ty with them actually... it's jaundice! lol
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This was the same for me, they wanted to keep Matilda in longer to do tests that I could easily do as an out patient, I fought to have her home on the Monday (after 11 weeks in NICU/SCN) but they wanted to wait until at least Thursday, they then tried to say that I couldn't take her home until I did a resusitation course lead by their peads, I had alreay asked many time what I needed to bring her home, this had never been mentioned. So on the Monday the leading pead was called and he kindly gave up his day off to come and go through it with us so we could take our precious girl home. Annabelle is a different story, they say they will not allow heartkids to go home on a NGT they have to be on full oral feeds, I fought so hard (as Matilda is still fed via NGT so I have ALOT of experience), they wanted to transfer her back to MMC and I knew once she got there it would take forever to get her out again so I begged and stated my case and at 16 days old she was released into my care with hopsital in the home visits daily, I thank the heart surgeon everyday for letting us come home as it took 6 weeks to be fully BF and therefore remove the NGT, this is when she technically should have been released, 4 weeks later.
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Wow ladies you have all given me so much from this thread. And I am so sorry to read the care that you have also received but will always have the hope that this is not the only way as others have already experienced better.
Working in a similar field I know what duty of care they have so there is no excuse
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Lou, I sincerely hope that the one thing you take away from this is that it doesn't have to be this way and that you can actually have an impact on trying to change it for others.
I think it's especially difficult for those of us who have been through long term TTC, assisted conception, losses, etc to be in that situation where our babies are taken away and separated from us and our access to them is controlled by others. I'm still not over the fact that I only got to hold Sam for a few seconds after birth - he was taken away before I fully grasped that I had given birth and was holding my baby... it can make the initial bonding with your baby difficult, but by no means does it mean you never will.
I find it strange to see that people in the same hospitals have such different experiences.
Bending Reality - I take some hope from your post. We went through Nepean Private (and stayed the entire 10 days because it was over Christmas and incredibly quiet), and I've got it in my head that if I have another child, it will also be premmie, and probably earlier, it's nice to know that there's good care in the NICU as well, and for parents in particular.
BW
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Good memories of NICU.... I think the best one was when I held my son for the first time - even though it was only a couple of minutes. It had been a very long 7 days and I loved every second of holding him.
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That's beautiful Christine
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I don't really belong in this group but wanted to say I still remember the smell of NICU at the old RWH Melbourne, the hand sanitizer (cannot stand the smell of that stuff now) the bells, and the staff. Most of the staff were so good and didn't seemed to mind the constant tears etc and they were awesome at explaining everything I asked about.
Nae x x
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Nae, just because the outcome of your experience was different to the rest of us doesn't mean you don't belong
I feel like I don't really belong because we were only in SCN, not NICU - but nobody's told me to go away.
BW
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