Where is the best premature information?

[grumpymoo]

Dear all

I am struggling to know where to go to get the best info for my baby regarding development, wind, feeding etc that is specifically for premature babies as this obviously makes a big difference to them in certain things.

I dont feel overly confident in my gps or hv premie knowledge as they seem geared up for term babies.

Any ideas would be very welcome.

Thanks x

 

[DonnaBallona]

I wish I could help sweetie-Im still looking for help and information and my little girl is 7 months on thursday!!

Has your little girl been given any follow ups with the peadiatricians? We have one around every 3 weeks-I hold out until then generally and then bombard them with any questions I have. If Im really struggling, I just phone up the SCBU unit where Brooke was-they are the best source of info Iv found. I dont really trust my HV's either as they quite clearly havent got the foggiest idea about tiny preemies.

If I can help with anything at all, feel free to ask or PM me! xx

 

[grumpymoo]

Thank you!

We dont get to see a pediatrician but that must be a great back up to have.
we have also been discharged from the outreach sister but i have her number so maybe i could call her sometimes.

I cant believe that there is not more support in the way of information for parents like us, especially for really tiny babes. I feel that we need even more info and help than parents with term babes for obvious reasons.

I think this is why i freaked out once we got home from the hospital. I just felt that we had no support after having so much!

I may pm you with the odd question if you don't mind, especially as your daughter is a few months older than mine and you have loads of experience now!.

 

[DonnaBallona]

If I can help then I will Hope all is ok. Just trust your instincts b

 

[embojet]

Just wanted to say that I agree there is not enough info out there for us preemie mums. i had a nurse visiting until Molly was about 4 months now we have pretty much been left to it apart from a visit to her consultant next month. As far as development goes, Ive been told that she will reach milestones anywhere between her actual and corrected age. IMO as long as you can see progress, then you dont need to worry. Feel free to PM me too

 

[nkbapbt]

I dont know if you would like peer to peer information...but this group has really helped me the past. There are TONS of very knowledgeable parents there that base their information on studies and facts and provide links to back it up, also on their own experiences.

I do sometimes find it a little negative. But overall good for feeding and more general related information.

It may help you?

Inspire Preemie

 

[grumpymoo]

Just wanted to say that I agree there is not enough info out there for us preemie mums. i had a nurse visiting until Molly was about 4 months now we have pretty much been left to it apart from a visit to her consultant next month. As far as development goes, Ive been told that she will reach milestones anywhere between her actual and corrected age. IMO as long as you can see progress, then you dont need to worry. Feel free to PM me too

So its not just me thenThank you for that and the offer to pm you

 

[grumpymoo]

I dont know if you would like peer to peer information...but this group has really helped me the past. There are TONS of very knowledgeable parents there that base their information on studies and facts and provide links to back it up, also on their own experiences.

I do sometimes find it a little negative. But overall good for feeding and more general related information.

It may help you?

Inspire Preemie

Thank you! I will give it a go

 

[prem2pram]

I have been busy adding useful links to information for parents of premature babies. As this is only my third post I am unable to add the link to my site, however you will find the link to my main page in my profile.

If there are any sites you feel I should include a link to please let me know.

Sue

 

[MandaAnda]

Have you guys tried looking at the Bliss website? They provide invaluable information that we use on neonatal units constantly. As a parent, you can even download/order certain publications of theirs. They also have a message board.

 

[prem2pram]

I agree with MandaAnda Bliss is an excellent source of information, I included several links to the Bliss site on my Premature Baby Information page.