What do you remember fron N.I.C.U

[Loula]

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?

[ellasmummy]

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.....

[melbel]

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....

[aussienic]

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,)

[butterfly_warrior]

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

[DaintreeDream]

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.

[Janie]

Girls, I'm so sorry that you have endured such horrible care, at such a sensitive time . 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

[Early Kids]

Girls, I'm so sorry that you have endured such horrible care, at such a sensitive time . 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

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 He was home on day 9 and discharged completely day 11. I was getting really ****ty with them actually... it's jaundice! lol

[DaintreeDream]

... 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...

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.

[Inertia]

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!

[MistyFying]

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.

[Janie]

That's beautiful Christine

[NaeNae]

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

[butterfly_warrior]

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

[didispunk]

I remember DS wearing cool sunnies velcrow around his head with funng pics on them while under lights for jaundice.

[Early Kids]

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

[Monkeysmum]

I remember the wonderful Nurse's they were all so wonderful and caring i didn't want to say goodbye to them.

Though i guess i will always remember the daunting memories especially when ds was rushed up to NICU and they could not stabilize him for a couple of hours i just remember him screaming and all i wanted to do was hold him but the doctors and nurse's told me to sit down and they will do everything they can finally when they got the IV drip in him and put him back on oxygen i was i able to get closer to him and give him a hug.
It was one of the scariest times i have ever been though.