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.

Not read thread yet but I wanted to say a huge thank you. Without people like you and your colleagues my 32 weeker wouldn't be here today. He is now 16.

Do you ever wonder if it is the right thing to keep attempting to lower the gestational age at which babies can be kept alive when the rates of severe disability are so high in the very, very preterm? I remember seeing a programme a few years ago saying that although rates of keeping these babies alive had dramatically improved the rates of keeping them neurologically intact had scarcely improved at all.

This is what I meant when I referred a couple of pages back to very, very few 23/24 week babies surviving with no disabilities at all. Our son had a less than 40% chance of survival, based solely on his gestation, and we were warned that he would most likely have severe cerebral palsy and/or be blind, deaf, tube fed etc. This was nearly 13 years ago but it's still now an extremely early stage to be born at. He doesn't have any of these disabilities but does have others and life can be quite tough for him. As OP says, we were so desperate for him to live that we were willing to take on any disability at all that he might have. We love him to the ends of the earth but I admit I feel incredibly guilty for everything he went through in NICU and still continues to go through as a result of being a 24 week baby.

catkin
I don't think anyone can make that sort of decision until they've lived through it. I cannot even begin to imagine being told that your baby may not live, or if they do live may have profound disabilities.
I have sat in many meetings with parents when the consultant tells them this. I admit I have a lump in my throat every time, and often have a good cry when I get home.
And most of the time those disabilities won't become apparent until the baby is much older.
Such a tough time.

On a happier note, we had twins on the unit born at 25 weeks, they come back to visit every year. Apart from both wearing glasses and one of them having been on oxygen for 18 months they have no problems whatsoever. They start school in september

Thanks for answering my questions upthread

My DD was born at 24+0 and is amazing. She has come on in leaps and bounds and if there are going to be any long term disabilities due to her prematurity, they are not apparent yet (she is 15 months). Another child in the family was born at a later gestation (28 weeks I think) but has cerebal palsy and other medical issues. The statistics I was given at birth were 50% chance of survival, and if she did survive, 75% chance of having a mild, moderate or severe disability. Extremely prem babies cannot be written off when no one has any idea of how they will fare. I lost a baby boy at 21+3 the previous year, I would have done anything to save him but he was just too early. We were more aware with my daughter and I’m so thankful that my consultant arranged for me to be transferred to a hospital with a Level 3 NNU so she was in the hands of the experts from the second she was born.

I had times in the NICU in 2005,2007.2008 with my three boys. They were all induced at 37 weeks and all were born with a genetic lung condition. We didn't know there was an issue before they were born. Since we were there 3 times in 3 years we knew the staff very well by the end! It was a registrar who picked up the link between the 3 and through his research my boys are part of research study in the US and are thriving! The poor registrar was there at the birth of my 3rd son so he could scoop him up and take him to the NICU as soon as he was born - I will never forget this registrar - his "theory" saved my boys lives.

The NICU nurses made everything easier and supported my husband and I each time and when it came to the third who was the most ill and fragile the nurses gave him cuddles and care when we needed some headspace away from the hospital.

I went on to have a 4th child - a girl - with no problems - walking out of the hospital without a NICU visit was strange but so needed.

Size of the baby on all 3 of my stays did not determine the outcome and on all three occasions I was there when a baby died - this was handled very sensitively

I don't have anything to ask but to say thank you as I am listening to my boys running around outside with their sister. They are now 13, 11 and 10 and my miracles

First of all - another one wanting to thank you, my dd spent the first 2 weeks in scbu and all but one of the nurses were absolutely fabulous.
I wonder if you can help explain what happened with one nurse i encountered. My dd was born at full term but was vomiting blood and was admitted with renal failure at 24 hours old. She was stabilised and i was determined to breast feed her. I achieved this by round the clock pumping and ended up with a fridge full of milk that could have fed the entire unit. I was also encouraged by all the nurses (bar one) to breast feed my dd as it meant skin to skin contact and helped my supply. She was then topped up (with my milk) through a feeding tube.

One night in the early hours when all my resistance was low (we still didn't know what was wrong with dd at this point), i'd had another turn at feeding dd, and when i'd finished a nurse told me i was killing her by 'messing about' breast feeding as they just get her warm and stable and i come along and have her out of the incubator for too long. Everything i did was under their supervision, from them phoning the maternity ward when she needed feeding to them getting her out and returning her to the incubator. At no point did i insist on visiting her or holding her unless invited to by them.
So can you shed any light into what on earth this particular neonatal nurse was on? Luckily i had a fabulous midwife back on the maternity ward who put me back together after that episode. I still tear up thinking about it all. Is breast feeding undoing all the care they receive? Was i acting against her recovery? In the end she needed an operation to repair her hiatus hernia.

Timeforanewname
I'm so sorry you encountered this with a nurse but I have seen it happen and I think I can maybe shed a bit of light. I maybe totally wrong......
Some nurses, usually the higher bands love to, and will 99% of the time work in icu. Working is scbu becomes alien to them.
So in their eyes, they are used to dealing with extremely small and sick babies who cannot come out of the incubator as they need to warmth and oxygen to thrive. A baby like that who gets cold can become sick very quickly.They use all their energy to try and keep warm.
So then this nurse has to work in scbu and isn't used to big term babies who can quick happily retain their own temperature.
Does this make any sense?

In my opinion you were doing all the right things breast feeding your baby and having lovely skin to skin cuddles. You absolutely didn't act against her recovery. Incidentally hernia ops are very common.
Please don't beat yourself up, you did nothing wrong.

*quite happily maintain, not quick

Thank you so much for taking the time to reply and reassure me.

,Timeforanewname I may be barking up the wrong tree but I have seen that scenario happen in scbu

Another big thank you. Oh and I have a question. For the first 24/48 hrs in NICU my 30 weeker had a little foam square stuck to his chest which wasn't wired up to anything
I've always wondered what it was for, can you shed any light?

sebashocked
Um I can only think it was a temperature probe pad? sometimes they are teddy bear shaped. maybe they were only monitoring his temp at intervals and not continuously.
We use foam for comfort too if the baby has a cannula or breathing tube that's rubbing on skin.
How big was the foam?

I also wanted to say thank you. My daughter died in the neonatal unit and when one of the nurses came in at the end of her shift to say goodnight to me, she just sat with me for half an hour cuddling me as I cried even though she had worked all day and undoubtedly wanted to get home. I received such kindness from everyone there at such an awful time.

lilaciris
so sorry for your loss I'm so glad you were comforted by that nurse. I'm sure she didn't mind atall!!
I remember a mum i came across sat on a chair in the corridor crying her eyes out. Unbenown to me she had been told that morning that her baby wouldn't make it. There's no way I could leave her there! we went to the parents lounge and had a coffee and a chat. 2 days later when she was going home after her baby had passed away she searched for me and gave me a hug and some chocolates.
I was so touched that she remembered me during what must have been such a sad time for her and her family.You parents are amazing!

Actually looking at one of the photos there is something sticking out. Temperature sensor?

CasualDress your compassion for us all shines through. Thank you so, so much. I will never forget most of the team who looked after our DS - nurses, registrars, consultants, everyone else. We were enormously lucky.

Mum of a 26 weeker born in a London NNU. He had a Grade 2 IVH but nothing else. He was on EBM and no TPN after 9 days and off oxygen by 29 weeks gestation. So his lungs were fine. He’s now 18 months old and walking, talking a bit and driving his older brother nuts. We are always so so grateful to his neonatal nurses and we go back once or twice a year to see them, we work with the hospital’s neonatal charity and we bake cupcakes for World Prematurity Day.
When he was born my routine was:
Wake up at 6. Express.

Wake up DS1. Drop him off to school. Head to Hospital.
Check on DS2. Express.
Hold DS2. Do a tube feed till he could Breastfeed.
Put him down at lunch time. Eat lunch. Express.
Come back and sit cot side. Do cares. Do another tube feed.
Go back and get DS1 from school. Express.
DS1 went to bed at 7. I would express again. Head to Hospital.
Hold DS2 for 2-3 hours. Express again. Be home by midnight.
Wake up at 3 am. Express.

Rinse and repeat for 67 long days.

My question is this: do you find that the theory that girls do slightly better in neonatal care to be anecdotally true where you work? And do you have a theory as to why?
Also. Do you ever get babies with no visitors (we had two on our London Level 3) and I wondered if that was very unusual? What happens then with babies like that? Some nurses would hold the babies in their spare time. But surely it isn’t good for the babies never to be held when they are so small?

sebashocked
The foam on the right shoulder? yes that's a temperature probe

thankyou catkin💜

koshamangsho
it sounds as though your DS did really well from the start! I'm sure it was still an awful time for you but seems as though he got away with a lot if the usual preemie problems. Your day sounds very typical of a lot of our parents, so so tiring for you.
A lot of parents say it's strange when they go home as they have no routine anymore and found it quite nerve wracking suddenly being alone with their baby, even though it's what they've yearned for for the last 70 odd days!
We do have more boys than girls! always seems to be that way and I don't know why. There was a theory it was to do with the genetic makeup of the placenta but I don't know how true that is. We definately have more 25/26 weekers that are boys.
We do get 'lone' babies. sometimes mum is on icu but usually,sadly is because mum is a drug addict or isn't allowed to keep the baby for whatever reason. it's very sad and we do try to give lots of cuddles. Foster homes are found quite quickly in these cases. We have a couple of foster families who we see quite often, they do a fab job!

Thanks so much! There was a point on our NNU there were 11 boys and 1 girl!
And yes we were exceptionally lucky. He was steroid mature and Inhad a mag sulphate injection. He was also a good weight at birth, more the size of a 28 weeker so I guess those things helped. I will always feel guilty though that we ‘escaped’ and so many other wonderful families didn’t have a happy ending.

Kosha please don't feel guilty, you did nothing different, it really is a lottery. I think it's common tho when parents have made friends on the unit and then go home and leave others behind to feel a bit guilty that they are going. Human nature I guess.
We quite often have alot more boys than girls.On Friday i was working in scbu and we had 9 boys and 5 girls.

How long do NICU nurses stay on a unit before moving to a different speciality, would you say? I've wondered about sending photos to my son's NICU (MCR St Mary's) to show how he is doing now, but thought there wouldn't be anybody left that would remember him.

It's his 9th birthday next month - born at 29+1 with IUGR, weighed just 635g. It's amazing to look back and think what was done for him when he was so tiny. He hasn't escaped without issues, but he's alive, and for that I am soooooo grateful

Eggysmom
I think it probably varies unit by unit. Some people love nnu and stick with it, others find it's not for them and move on. It's a speciality and training is done on the job. I did child nursing but we have adult trained and ex midwives with us.
I've been there 11 years and there's nurses that have been there a lot longer than me!!
I would say defo send in a photo with your sons story, I bet there's someone who will remember him!