I only really have sad memories up until SCN but i loooove top to toe! I bought it today lol And i still think to use paper towel wipes. Damm i got good at those cords! I know what the monitors mean :o What good memory go you have from NICU?
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I only really have sad memories up until SCN but i loooove top to toe! I bought it today lol And i still think to use paper towel wipes. Damm i got good at those cords! I know what the monitors mean :o What good memory go you have from NICU?
I remember dd being under the lights for her jaundice with the eye covers on resting on top of a nappy like a roast chook! She still loves being all snuggly and warm. She also loved playing with her nasal tube. I have a beautiful photo of it draped all around her and her blanket.
the nurses letting me hold tank when ever I wanted.
I'll never forget the smell of the place though :( and the smell of the accomidation at the hospital itself :sick:
I remember everything.... the beeping, the lighting, the humidity....
Brendan's entire journey made Tristan's a whole lot easier. Knowing what it all meant and how things happened down there meant that when Tristan arrived I was left to my own devices. I was "allowed" to do everything with him, because I didn't need to be shown.
I also LOVE the smell of Aqium ;) Although sometimes it does bring back some bad memories...
Sadly my strongest memory is the absolute pain of not being able to hold my baby for the first week of his life. It felt like torture. There he is in a little plastic box and you can't have him! I remember every time I walked past the NICU unit with Haz when he was born I would just have to pick him up to prove to myself I could.
Same here. Matildas journey made Annabelles so much easier. I too knew what all of the machines meant and the beeps and the leads. I mastered putting the leads on and repositioning them when they played up. I hate that Aquim stuff, it leaves a horrible coating on your hands, they had that at RCH, the pink stuff at MMC was a little nicer. I too had the pain of not being able to hold my baby, not being able to feed my baby and the unbearable pain of their little bodies still from the drugs after surgery, the recovery that seemed to take forever, the pain I knew they were feeling and the tubes down their throats to help them breath, the pins coming out of Matildas chin when she was so small and having to turn them knowing that I was extending her little jaw, to see Annabelles heart beating with her chest open wide all the while so tiny and limp. I find it hard to treasure happy memories from NICU, I prefer to treasure happy memories at home where my girls are now safe and sound.:
I have so many negative strong memories, everything still feels too fresh one year on. But a good memory was seeing DH learning how to change her nappy in the first few days while in NICU, under lights and on CPAP. His hands looked soooo huge lifting up our little DD, and he was shaking and scared about hurting her. HE was so in love already and it was beautiful. The first kangaroo cuddle when DD was 2 days old was so overwhelming, then I had to wait again for a few days so heartwrenching as well.
Everytime I smell anti-bacterial hand wash it brings me back to just entering the NICU to see DD.
I also remember being swift at changing nappies side on while DD was in the humidicrib too.
I recall every visit upon entering the NICU running to see DD's 'daily running sheet' to check her weight gains ;).
I don't think I will ever escape CPAP, we are still battling it now and it is still a horrible thing to deal with :(
Yes I too remember running in to see the weight gain, Matilda had to be a minimum of 4kgs to undergo surgery and until the surgery was complete we could not go home, so to see those gains was a mixture of feeling, 1. closer to home :) 2. closer to surgery :(
Our NICU CPAP didn't bother me so much because at least you could still see most of their face, I've seen some where the snorkel is in front of them and it covers the whole face :(
Waiting to hold Brendan was torture, he was 5 days old when I got a 5 min cuddle while they changed his bedding in the humidicrib. With Tristan he was placed on my chest at birth, absolutely beautiful moment, even though short lived (he needed to be intubated).
I also became a pro changing nappies side on in the humidicrib :lol: Brendan was in his until about 3 weeks old, even then they didn't really want him out because he was only just 1600gm, they prefer them to be 1800gm.
Ah soo many memories.... the absolute best day was running out that door and putting Brendan in the car for his first car trip.
My baby is in now for severe respectiory Distress and is full term although on the mend. I know I will have many mixed memories. The lack of care and communication in the private sector where we were not encouraged to even place a hand in our Childs humidy crib in scn and the sheer tears of unbelievable gratitude for the kindness in NICU when asked if we would like to change his nappy and the later was the second experience?? Where his condition was worse. Very different worlds. I'm sure I will have many more memories to come over the next few days
I remembered another one as I went and found Mateauz NICU memory box.....weighing our nappies...I can giggle about it now but I use to hang on seeing how much 'output' he had.
SCN Loula was the same here hon...I had to fight to hold let alone BF Mateauz yet when I got to Melbourne the first thing the nurse in the quarantine section at the Mercy did was ask me if I wanted to hold my baby....I cried and cried and she was there crying with me...I will never forget her face and how much love she gave me
:hug: honey
Lou, I'm so sorry you were treated so poorly in SCN :(. I will be forever grateful to all of the nurses who encouraged me to do Daniel's cares, when I was nervous in the early days. He was so small! And I was so worried I would spill precious EBM when feeding him etc. But it makes such an enormous difference to how you cope, being able to do things for your baby, it is sooo important.
Lou, my eldest Matilda was also a term baby who was admitted due to severe respiratory distress, I am sorry that you are walking this path and that the nurses treated you so poorly. Never be afraid to ask for anything you feel you need, I found that only once I started asking did I find that I was able to do (more than I realised) meaning; cares, holding baby, I found that most of the nurses had no idea what it felt like to have a baby in NICU and therefore didn't understand that something as simple as a touch meant so much. I hope your little boy is at home in your arms soon :hug:.
Lou, I'm really sorry to hear that you've had such poor care.
We were only in SCN, not NICU, but I found that the prevailing attitude would vary depending on which nurse was on duty. There were some that frowned upon us spending time in there with our boy, some that seemed to think that he belonged more to the nursery and them than he did to us. But others who were wonderful, caring, considerate and were just absolutely amazing in every way.
BW
Ditto both BW and DD.....I found over our few days in SCN that most of the nurses were great but there were a few who were lacking in the empathy department. I have been reliving and analysing our experience over the past couple of days with Lou being in the same hospital we were and I have come to realise like you DD that it wasn't that the nurses were stopping us doing things for our babies it was more that they didn't realise we had no idea what we were allowed to do especially being first time mums as well as being first time mums of a sick baby.....we had no idea where the boundaries were, whether it was okay to pick him up or touch him in the crib or change his nappy. It was only when we started asking questions more and aksing if we could do things that more of a rapport was formed and communication was improved. i think sometimes they become so focussed on the baby that they forget there are parents attached. I think if it had been my second i woulf have known more and demanded more...as it was i was like a deer in the headlights and it was like a catch 22 situation...the middies on the ward didnt know what to with a patient without a bubba so they pretty much left us to our own devices and the SCN nurses were focussed on the baby and assumed the middies on the ward were showing/telling us what we needed to know and so between the two the parents were getting left out of the equation somewhat.
My memories are mixed......I cannot fault the care of my little boy, I wish the longterm outcome had been different as he still wont take the breast at six months after being force bottle fed for those days but I know that in reality there was no other realistic option for treatment of his particular issue....I wish syringe feeding had been an option and maybe if he had not had such stubborn hypoglycaemia, syringe feeding might have been an option but as it was he needed such large volumes that this would have been totally unworkable.
I wish we had been able give him his first bath at our days of age instead of watching as a SCN nurse do it....all little things compared to the fact we got to take home a live healthy baby at the end of it but things that bother me nonetheless.
The smell of the hand sanitiser always brings back strong memories especially this time having had all three in the nursery. The one thing I wish they had was an induction - here is where everything is and this is what you can and can't do. We kind of felt a bit lost first time around. We learnt from other parents and one or two midwives. The second stays were much easier as I already knew the routines. We always tried to help out parents who seem lost if we could.
I will write more from home when I am there as I know I will need to get this all down and advise from mums that gave been there iykwim?
But I am very open to ask questions and have worked in icu in londons biggest hospital be it as parent support and assistance to play spec.
But when I ask scn staff how my son is I expect more than plodding along as the reply with no eye contact while he thrashes around in his crib trying to breath. Knowing that no medical staff as a pead or dr have even looked at him or reviewed his blood work in 8 hrs then to finally get hold of the pead and be told everything g is good. To go back 1/2 hr later and a nurse says he now needs breathing support WTF? Then when speaking to the same pead be told that it's too late to discuss and this baby got dumped in him was just too much for me to bear. ESP as it was my mum that picked up the distress in the first place!!!
Sorry this is still too raw at the moment. My case was not that the staff were unaware that we were first time parents needing to be assisted. They forget we were even human!
I was also laughed at when I asked one do you think he is in pain?
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.....
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.... :hug:
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.
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...
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.
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,)
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
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.
Girls, I'm so sorry that you have endured such horrible care, at such a sensitive time :hug:. It seems so foreign to me, as the staff and facilities at our SCN were so wonderful. I hope you all feel able at some point to constructively complain, as that is how things get changed (hopefully). Again, I'm so sorry, I feel terrible for all of you :(
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!
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 :( I was there for every single Dr's round fighting for them and making sure they got the best, I know in my heart that it was me who got them home sooner. Brendan they wanted to keep in until after the Easter long weekend I fought and fought and with some tears I managed to persuade the Dr to let him go on the Saturday, only because my mum was going to be with us for a few days. With Tristan his only issue after day 3 was Jaundice, it took a LOT to persuade them to transfer him to my local hospital and then it was easy to manipulate the local Dr here :lol: He was home on day 9 and discharged completely day 11. I was getting really ****ty with them actually... it's jaundice! lol:
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.:
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
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
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.
That's beautiful Christine :)
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
Nae, just because the outcome of your experience was different to the rest of us doesn't mean you don't belong :hug:
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
Dd1 was only in the NICU for two days but it is the same room as the scn all three were in, the experiences are very similar.
I remember DS wearing cool sunnies velcrow around his head with funng pics on them while under lights for jaundice.
It doesn't matter whether it was only SCN or not, the fact is you had your baby taken away and then had several hurdles to get over just to cuddle your baby. NO PARENT should EVER have that heartache!
Both mine needed NICU, it might have been an easier experience with Tristan but it was just as hard when they took him away from me after he was born :(
Well said Sally. There are so many positives I have found already. And so many memories I will cherish and forever grateful not only for the care my child receives but from watching the staff with the others in care with them. I am in awe at how wonderful the staff are.