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.

@Lelouch

My DS2 was born with a TOF, he's now 11 months old. If you don't mind me asking, how are you now as an adult? I spend so much time worrying about feeding/chewing and DS gets food stuck very frequently.

OP I don't have a question but thank you so much for the work you do. DS had an undiagnosed TOF and we were expecting a healthy baby when he was born at full term. It was so hard to adjust to NICU and his diagnosis and the kindness of the nurses in particular really helped us.

Eto, I also had a full term baby in NICU - he was almost 9lb. He looked like a giant compared to the other babies! In our case he had a diagnosis of a recognised condition and needed surgery. I hope you get the answers you are looking for about your sons lungs.

Coincidentally, DS did get sepsis after his surgery but it was treated and resolved very quickly.

@rockandrollwithit

I don't mind at all, I'm sorry to hear your son also had TOF. It's such a shock when you didn't know anything was wrong.

I'm perfectly fine! Very occasionally if I eat food like bread or potato too quickly/without enough water then the food will seem to get a bit stuck which is uncomfortable. But some water fixes it :) I can't remember the last time it was an issue though. I haven't needed any further operations or treatment since. I know my parents were worried about any future babies having TOF but they were assured it was very unlikely, and neither of my sisters were born with it.

I hope that's encouraging :)

Ahhh the app got rid of my paragraphs! Sorry about that.

etotheipiplus
so sorry you had to deal with your mum passing away. what a bittersweet time.
We love big babies on nnu! we do have quite a few actually as we take babies from a quite big area and do surgery too.
I can only think that your babies lungs became wet during delivery. sometimes babies need a little bit of help for a few hours if they have aspirated some fluid at delivery. They would have treated for sepsis to cover pneumonia until they blood results came back.

bustergonad
sorry to are struggling still.
IUGR is extremely common. I have never heard of the steroids being linked to Autism.
The most common cause of IUGR is lack of oxygen to the placenta/baby. I don't think anything you did would have caused this, please don't blame yourself.
The lack if oxygen can cause many long term neurological problems so I suspect your son has been affected this way. Did he have follow ups with the neonatal Drs?

bouncingbelle
Yours is a very common story! babies often go from scbu back to ICU, sometimes more than once! it must be so hard for parents going through this.
I assume the Drs read your babies blood gas results which must have shown some thing of concern.
A blood gas shows how well the lungs are working, an imbalance of carbon dioxide and the blood PH may mean the lungs need extra help for a while.
It is usual with results like this to give antibiotics in case the cause is sepsis. This is often given via cannula but they may have put in a long line if they suspected the baby needed to be nil by mouth so therefore would need TPN
As the baby gets older We often 'trial' babies off of oxygen to see how well they cope, sometimes they need to go back on for a while.
I know of babies not being on oxygen, then suddenly needing it, it's quite common.

@Lelouch

That is very encouraging, thank you! DS has needed one oesophagal dilatation so far and may need more but we have been reasurred that this will get better with time.

lelouchvi I assume it was a few years ago that u were born?! I've not heard of an iron lung for a while. I'm glad you are fine now
rockandroll
It must have been a shock to have a baby with undiagnosed TOF but I have seen it happen. It can be a long hard journey for parents but often there are no long term problems.
As I said earlier, we love a big baby on nnu, a good excuse for cuddles

Does your unit use donor milk?

No questions just a thank you. I have an ex 31 weeker and the nurses were incredible, I will never forget them or the care they gave us all xx

Sorry I know you have heard this a lot but a huge from the bottom of my heart thank you from me as well

Ds2 was early , fighting breathing problems and had an infection and I was in ICU....ive never been more grateful for neonatal nurses not just for the immediate medical care but for the support and kindness

I suspect it's hard to realise how truly amazing you are until experiencing the other side but truly neonatal nurses are some of the most amazing people I have ever met and I'm grateful that they were there when Ds2 was alone and frightened and just in the world

Thanks so much for the reply and reassurance, it's a relief to hear:) Her stools yesterday were all completely normal. She apparently had another big stinky one last night but her temp etc is all normal, so hopefully it's just her digestive system getting into the swing of things!

Glad to hear that glasto
Many thanks for all the wonderful thank yous, it's really appreciated.
Just had a sad, tough night shift so I'm off to bed now. I promise to answer more questions later on today x

spacedinosaur yes we do use donor breast milk

Thank you for replying.

I'm a donor to a national bank. We're told as donors that our milk goes to the sickest babies who's parents give permission but obviously nothing more.

Do you ever find that parents who's babies would benefit/are offered refuse donor milk because they think it's "weird"

spacedinosaur thankyou for donating your breast milk, that's an amazing thing to do. Donor milk is so so important for very sick preemies.
I have never known anyone refuse the use of donor milk for their baby. I think they realise how vital it can be for their babies well being. Thankyou

Thank you casualdress - DS was indeed suspected to have (and did have!) A serious stomach infection and went on to TPN so i presume thats why the long line went back in. Your other explanations make total sense to me now!
Space dinosaur - my son was on donor milk for 6 weeks. I am convinced it was as vital to his survival (he had several stomach infections and i am sure of he was on formula these would have been worse) as all the medical care he recieved. I am in absolute awe of mums witg young babies themselves who make the effort to do this for the very sickest of babies and their struggling mums. Every day i give thanks for what you, and all the donors, do.

I didnt mean my comment to be anti formula btw. I just meant in OUR situation with a very small, very sick preemie with recurrent stomach infections, formula would have been very hard for his stonach to digest.

bouncingbelle We don't tend to give formula to extreme preemies as the gut just cannot handle it. There are preemie formulas which we use as the babies mature, but until then it's normally breast milk, Donor milk or TPN
It really is a case by case decision for each baby.

@rockandroll I'm glad to be of help :)

@CasualDress Yep I was born in the early 90s, I'd heard they don't use iron lungs anymore! Sorry to hear you had a tough shift :(

Ex 28 weeker here, born getting on for 4 decades ago now. What I find funny looking back at photos is how sparse the incubators looked and how little medical intervention I had - lying in a big empty incubator with only an NG tube and a heart monitor on my chest. I’m pretty sure it’s more standard nowadays to have babies on some sort of breathing support at that gestation?

Also, have you ever met a preemie born unexpectedly at home? I was, and I always think how lucky I was that I came out breathing, otherwise I would have been toast.

Haworthia It must be lovely having those photos to look back on! I think you probably were very lucky you were breathing!
Thinking about it, I've never known of a preemie to be born at home. I guess there's lots more monitoring and anti natal care these days so problems are picked up earlier? We've had a few ladies turn up on labour ward very close to birth.
Not all 28 weekers need breathing support but most do. I think these days there's more monitoring around the incubator, aswell as nests,toys and all sorts of other stuff around the incubator!! we've had Xmas lights, bunting & football flags

Yes, I think women are more encouraged to report problems and come in to be assessed if they feel unwell or think they’re having contractions. Apparently my mum was just told “You can’t be in labour. Go and have a bath.”

A friend of mine who’s a doctor and worked on SCBUs saw a photo of me in an incubator and said it was so bare it looked like it was from the Soviet era

how funny