Help me with list of questions for neonatologist

[Lottie86]

I'm getting my NICU tour early next week and meeting the consultant neonatologist to discuss with him about Miss Bumpity and what to expect when she arrives (she has severe symmetrical growth problems with her brain also being very small and not growing properly, fluid levels below the bottom centile and she is also underdeveloped for her gestation) as she'll be arriving at some point in the next few weeks so if anyone can think of any questions that would be worth me asking him please feel free to post. (and if any of you can answer any of them please feel free to do so!!)

So far my list of questions to ask them relating to 'general' preemie stuff (as opposed to stuff more related to the chromosome abnormality and how it could impact on things) is as follows:


1. Do the steroid jabs mature the lungs by a certain amount of weeks or do they mature them to a certain point? (ie if you gave for example a 26 weeker and a 30weeker the same steroids would their lungs reach similar maturity after them?)

2. At what gestation does the risk of IVH reduce a lot/totally disappear?

3. Are there risk factors other than gestation that can affect risk of IVH (ie baby being underdeveloped, extremely low birth weight etc?)

4. Is ROP potentially going to be an issue and when do they check for that?

5. What sort of problems are our NICU unable to deal with and could result in us being transferred to Dundee/Edinburgh/Glasgow?

6. Do they allow/encourage kangaroo care

7. Can extremely low birth weight cause any problems in itself (she's measuring 24+0 at 30 wks)

8. Are they supportive in encouraging breastfeeding preemies as when/if she is able to I'd really like to give direct bf a go this time rather than just expressing.

 

[freddiesmum]

Hey, hope you are ok, i cant really answer any of your questions but with regards to the steroids, i dont think there really is a answer because my waters broke at 23weeks 4days with my lol and i was given the steroids, he was born 4weeks later and still suffered dluble,pumathorax (both his lungs collasped) so in effect, the steroids made absolutly no difference!
I hope you get all the answers though and everything goes well and miss bumpity is ok xxx

 

[Agiboma]

hi lottie i think i can answer the following:
#2 i was told ivh reduces @ 34 weeks as the vessels are more developed @ that point in time
#3 was told major cause of ivh is ventillation or receiving any type of breathing support and below 34 weeks gestation
#4 in our NICU they checked for rop @ 31 weeks and onwards

hope this helps really wishing you and your family all the best

 

[PrincessPea]

Hey Lottie and Miss Bumpity, :wave:

I dont know how much I can help but I will put down what I found as the mum of a 24 weeker, although I know Miss Bumpity is not, but from the point of view of size etc. Hope it helps even a wee bit. Thinking of you dear.

1. Do the steroid jabs mature the lungs by a certain amount of weeks or do they mature them to a certain point? (ie if you gave for example a 26 weeker and a 30weeker the same steroids would their lungs reach similar maturity after them?)

I cant even begin to answer this one in medical terms but as I have said on here before, I only managed to get 1 single dose of steroids with Jessica, about 3-4 hours before she was born and she was then only ventilated for 24 hours at the beginning. I think I have read somewhere that there is research saying that you have to have had 2 doses and they have to have had 12 hours to work or something but I genuinely believe the dose I got helped Jessica and I know there are others who were in a similar situation who feel the same.

3. Are there risk factors other than gestation that can affect risk of IVH (ie baby being underdeveloped, extremely low birth weight etc?)

Again I dont know medically but the Sat after Jessica was born she had a Grade I brain bleed which was originally explained to us as a Grade II-III until they got a consultant to check but when they were talking us through it they didnt mention it being connected to low birth weight etc.

4. Is ROP potentially going to be an issue and when do they check for that?

ROP was explained to us as a possibility and Jessica was first checked for it at around 4-6 weeks (everything is all blurry, sorry) so about 28-30 weeks (I dont know if your NICU will be the same as Stirling) and after that she was checked every 2 weeks. If they thought there was any potential of any problems with any of the babies eyes they checked them every week.

5. What sort of problems are our NICU unable to deal with and could result in us being transferred to Dundee/Edinburgh/Glasgow?

Again if your NICU is similar to Stirling then the LO's were mainly transferred to Yorkhill for anything 'surgical' i.e a central line or if they required surgery for anything. That was certainly my experience but I may not be correct.

6. Do they allow/encourage kangaroo care

Again if its anything like Stirling then yes they will actively encourage Kangaroo Care although it was 4 weeks until we got our first cuddle with Jessica. It then took a bit of time for her to be able to cope with being out of the incubator and then it depended which nurse was on, but once it was established (within a further week) we had her out on a daily basis.

8. Are they supportive in encouraging breastfeeding preemies as when/if she is able to I'd really like to give direct bf a go this time rather than just expressing.

My milk dried up before Jessica was big enough to bf (I have since found out this may have been due to the Magnesium Sulphate I got for the pre-e, not because of the time it was taking her to become big enough) but I know that anyone in the unit who wanted to try seemed to be actively encouraged and supported. Again someone else may have a better perspective on this from the point of view of someone who actually tried bfing.

 

[Lottie86]

Thank you I'm feeling a bit nervous today purely because I don't know the unit or anyone who has used it (Findlay was born down in Dorset) so I've no idea what they are like but hopefully I'll feel a bit more relaxed once I've spoken to them next week and seen the unit. Findlay's unit were really really pro kangaroo care and it really did seem to help him with stabilising his temperature and his breathing when he came off CPAP and things so I'm hoping they are keen on it up here too.

 

[Mumof42009]

Can't think of anything but just wanted to send you hope everything goes ok xx

 

[bob2331]

1. Do the steroid jabs mature the lungs by a certain amount of weeks or do they mature them to a certain point? (ie if you gave for example a 26 weeker and a 30weeker the same steroids would their lungs reach similar maturity after them?)

I got both shots of the steriods, 24 hours apart and i truely believe thats what saved harry live! He was only vented for 6 hours as a standard procedure for 24 weekers where i had harry and from then on, vapurtherm (apart from when he caught a chest infection at a week old but thats forget about that)

2. At what gestation does the risk of IVH reduce a lot/totally disappear?
Harry has a tiny bleed at 24 hours but then it reduced. I have to say out of all the babies i have meet in both the hospital harry was in, we have never come across any big or worrying IVH (i assume thats a brain bleed if not, ignore me)
3. Are there risk factors other than gestation that can affect risk of IVH (ie baby being underdeveloped, extremely low birth weight etc?)

I cant help im afriad

4. Is ROP potentially going to be an issue and when do they check for that?

Harry was checked at 28 weeks (4 weeks actual) and from then on every 2 weeks, he developed grade 1 but it sorted itself out as he got bigger

5. What sort of problems are our NICU unable to deal with and could result in us being transferred to Dundee/Edinburgh/Glasgow?

Again, harry didnt require any thing like this.

6. Do they allow/encourage kangaroo care

I thing all level 3 hospital encourage it, i would be surprised if they didnt but hopefully as soon as miss bumpity is stable, you will get lots of cuddles

7. Can extremely low birth weight cause any problems in itself (she's measuring 24+0 at 30 wks)

I belive the main problem low birth weight babies may face, is unable to keep their temp.

8. Are they supportive in encouraging breastfeeding preemies as when/if she is able to I'd really like to give direct bf a go this time rather than just expressing.

I hope they are supportive, St Peter's where i had harry, encouraged me to put harry to the breast when he was about 4 weeks old (28 weeks gestation to have a lick and kiss) and he seemed to do just that but also had a scared look on his face as though he was thinking, ' what the HELL do you expect me to do with that massive thing'!!! lol. I will say though, the second hospital we were transferred to, they were very much babies can not breastfeed until they are 34 weeks, no earlier and sadly, i had had my breakdown by then and wasnt alllowed to bf due to medication.

Hopefully they will be able to anwser these questions for you and help reassure you for when miss bumpity makes her arrival

 

[Dasy25]

Hey hope your visit goes well and all your questions are answered. I can't really help a great deal i'm afraid.

Re Steroids, i feel they definitely worked as Ella was only ventilated initially over night, cpap for two weeks then vapotherm. Thing is we will never know if it was the steroids that helped or not. I'm sure they did tho. We managed to get the two doses 12hours apart.

Re Bfing it was totally dependant on what nurses were on that day. Some nurses were encouraging me to let Ella nuzzle at the breast around the 32week gestation perriod without actually feeding her however some wouldn't entertain it. I was also told conflicting info about when she should be allowed to try a suck feed or Bfeed. One view was that she had to be able to take a whole bottle feed before being allowed to to go to the breast. I was like WTF??? At that rate i would never have been allowed to Bfeed her as she rarely finished a bottle before coming home which was 2weeks after her actual due date! Anyways my point is every hospital/nurse differs in opinion i think and when you feel your little Miss Bumpity is ready for it then i say push for her to try unless their is some medical reason why she shouldn't. (Same goes for Kangaroo care i say too) Sorry dunno if i'm making any sense or not. Have the habit of rambling.

One thing i found difficult though, which i hope you don't experience is the transfer of hospitals. I had Ella in one hospital (Not our local unit as it was full when i went into labour) and was transferred back home after 4weeks. I really struggled to settle in and it felt like i was an alien in the unit. Everyone kept referring to us as the ones who had their baby in Glasgow (like we didn't belong ) Took me a good 2-3weeks to settle in. Even then we were transferred out and back another twice. Every hospital did things so differently. It got easier to deal with the more confident i became. I felt i was always comparing hospitals and practices. Drove me mental.

Anyways sorry i couldn't offer you much advice or answer any of your questions really. I hope things go well. to you and Miss Bumpity.

 

[Foogirl]

The steroids definitely worked for Abby, but the question I would ask is, if you have the two doses, how long are they effective for? I've heard conflicting views. Some say they only last a couple of weeks then you would need more. Other say, once you've had them, that's all you need.

I would also ask their policy on visiting. Who can go, when can you go and how happy are they for you to call at any time.

Another question would be about doctors rounds and whether you can be there when the doctor sees your LO, or what is the procedure for catching up with them.

Ask what acess the unit has to counselling for you.

Good luck with your visit.

 

[AP]

G has some very good questions to ask there!

 

[xxClaire_24xx]

hi Ellie was born early by section and I had all the same problems with my pregnancy as you are having. I had steriod injections at 24 weeks as Ellie was being del anytime from then at weekly scans (2 a week) thats when they decided if I was staying in or going home. I then had 2 more the night before she was born and Ellie had no breathing problems til day 3 but that was because she had a bad infection. Emm im not sure what sort of questions to ask but they will all pop into your head when your there im sure. Wish you luck xx