I'm a Neonatal Nurse AMA

[CasualDress]

Hi just thought this might be of interest to some people.
I've name changed to keep this separate from my other threads.
I'm going to work shortly but promise I will answer any questions when I get home.

@elliejjtiny certainly my MIL spent years telling everyone that DS is "fine now" - I think she stopped doing so around the time that he started at a special school! It drove me crackers at the time, but looking back, I think she was so worried and had no prior experience of what we were going through, and was trying to convince herself that he was fine.

I hope I haven't scared you by being so frank - obviously every baby's situation is different and is entirely individual to them, and DS was born right on the cusp of viability so he was never going to be completely unscathed. x

Right, I will try to answer some questions.
It's so lovely that lots of you are so grateful. Believe me, not all parents are like you! some like to complain from day 1, I know they are worried sick but abuse doesn't help
bingbangboo
we usually tell parents to aim for home around babies due date, then if it's before that it's a bonus. Tbh most go home before their EDD
Whattimeislove
family integrated care can be wonderful, we are trialling more of this. It can have it's downsides. last year we decided to let parents all stay in the room during handover, but we found out that some parents eavesdropped and started gossiping about each other's babies.
Pull down beds can be lovely, again it can have it's downsides. We had a dad laid in a bed making a roll up ciggy
We have a great team of Drs, they do as they're told

Thanks @CasualDress - I think there needs to be very clear expectations laid out with family integrated care - there are so many benefits that it's a shame if a few parents blow it for everyone

squirrelclub I very rarely see mums with consequent preemies. I know of one who has had 3 26 weekers! I think she's spent about 350 days in total on the unit.
robojesus
that's a tough question! We have quite a few babies go into care, babies of drug addicts etc. It's very sad but good to see the baby go to a loving family.
Sadly babies do die. It's affects us all no matter how long the baby has been with us. I think we do end of life care really well. We have an excellent bereavement team.

dreamingofsunshine
we service a wide area so one of the biggest challenges is bedspaces, we could care for 3 times the amount of babies if we had the space. There is never an empty unit!
Also some parents can be a challenge. extremely demanding, abusive and don't abide by visiting rules etc
ellijjtiny
we love to receive photos! as I said earlier, we have a photo wall. we've got a 21st card on there with a photo of baby at birth and on his 21st birthday.
One family bring in a huge cake every year on their daughters birthday, it's great!

l

@squirrelclub Do you know why your baby was prem? I had two prem pregnancies because they weren't sure what had caused the first, so couldn't put anything in place to help prevent it happening again.

Like a pp said we can't predict future problems, it does appear to be a lottery.
Things like ROP, PDA NEC, Chronic lung and brain bleeds can all be overcome. A lot of babies do go home on oxygen but are usually off it by 18months.
NEC can mean surgery and a stoma. but this is usually reversed before discharge. We do see babies who have cerebral palsy from brain bleeds.
Often parents are so desperate for their babies to survive they don't worry about disabilities in the long term

Your thread has made me cry! I am so so grateful to you all. Honestly, it was an awful time when I look back now but at the time, you are on autopilot or numb.

My dd was a 29 weeker in a level 3 (we did a transfer between 2 level 3 hospitals and both were v different in terms of age etc. But the nurses on both were amazing people. I remember them all). She had an easy ride TBf. She did have ROP and they had to make me leave the room when they would check her eyes. I could still hear her scream.
She was the smallest in the unit her whole way though (8 weeks) but not the earliest.

Not all the babies and families were as lucky as mine. I often wonder about them.

It was actually the larger, full term babies that had come in as they were so ill that used to get me the most in a strange way.

The nurses were v easy to talk to. Some would chat to you all day about all sorts. A couple would share stories of other past babies. Sometimes to reassure you. Sometimes to make you realise how lucky we were.

I know I'm rambling. Again, I wanted to say a very sincere thank you. To the wonderful neonatologist too (amazing woman who went far far beyond what she needed to do to try and diagnose/sort my dd's lack of failure to thrive out for 2 years post discharge).

DD is now 5. And the sweetest, happiest little girl I have ever met.

Interesting your comment about visiting hours. There's research to show that parents having 24-hour unrestricted access to their babies improves the outcome for the baby and means they go home earlier. One of the ideals of family integrated care is that there's no such thing as "visiting times" and parents have continuous access as they do on paediatric units.

Whattimeislove
our parents have 24 hour visiting, I was taking about other visitors, family and friends. We have a rule of 3 visitors to each baby and have an afternoon and an evening session.
You'd be amazed how some people think they should be allowed 6 at a bedspace and stay as long as they like
If the mum is still on labour ward or too poorly to visit, we try to take the baby to visit mum.

I can imagine that being an issue, space is right enough with all the machines in ICU without extra people too.

user147 I can watch most surgery, but eyes just freak me out, I can't watch the ROP screening which I feel so bad about, but I've never liked eyes.

I'm so glad to see positive stories from you all, it's so heartwarming

Do the babies parents usually stay with them every day? This is one of the (milder) things that worries me about a potential NICU baby as I have two young DC. How do they normally juggle normal family life with an NICU baby in your experience?

greenmeerkat some parents sit there all day if they have no other children. I encourage them to have food breaks or even to just get out in the fresh air for a bit.
Some parents will just come in every evening or while the sibling Is at school.
It must be so difficult juggling family life. I don't judge when people visit. I like the excuse of a cuddle if mum or dad can't be there

Another thank you after I went into labour at 23 weeks. My little girl weighed just over one pound. She is now a healthy 13 year old, a few minor issues to do with her prematurity but she lives a full and happy life without any obvious signs of her shaky start in life.

Casualdress- can I ask a medical related question please?

If you had a full term (9lb) baby readmitted for phototherapy(bilirubin of 420) at 5 days old with a bic of 15mmol, who’s ABG at birth was ph=7.08, defeicit of -10.6, what would you be thinking?

(For transparency I have concerns that my child’s medical care was mismanaged, though it’s now too late to take action. I’d just like some closure).

.

pinky that's quite a high billi, how soon after birth was baby discharged? was baby on nnu atall?
the ph is acidotic which can cause serious problems with kidneys etc
The blood sugar is borderline.
I would say baby needed further investigation and a stay on nnu

I have a relative who is 60 years old. He was 1lb when born and is fine and dandy! His mum remembers him being wrapped in a foil blanket and him having donor breast milk. Amazing what was able to be done even 60 years ago!

Lo was discharged at 36 hours old, no nnu stay, no fluids, no additional care or observations.

When readmitted at 5 days old lo has 13 hours of phototherapy, no additional fluids or observations, lo had a seizure but was still discharged after just 15 hours with a bilirubin level of 330.

I think her blood tests show that she was very acidotic throughout her stay, and she now has complex medical and neuro developmental needs.

Nothing to ask but a chance to express thanks to all of you. My 31 weekers are 7 now. I will never ever forget the nurses and their support as appropriate.

Gosh pinky I'm so sorry that happened to your DD
No way would I recommend discharging a baby with a billi that high. Did they show you a graph of her billi levels at any time?
At the least she should of had regular blood gases and fluids.
We treat acidosis with bicarbonate, oxygen and or antibiotics depending on the cause.
Do you have her discharge paperwork?

aperolspritzplease
thankyou, I will have the tea and flowers please

Do you ever wish that some babies with serious problems had been born sleeping? Watching them so ill and parents so desperate must be heart breaking.

Pinky, my DD had a bili of 261 at 10 days and we were brought back in for photo therapy.

They said the treatment line was 250 for phototherapy, from what I can remember for us 420 would mean another transfusion and probably an exchange one at that.

DD had feotal anaemia due to maternal kell antibodies. We were in for 9 days total on neonatal, HDU and transitional care for an initial transfusion, then photo. Then home for about 48 hours before readmission to the children’s ward with the 261 bili for a further 3 days photo.