not really sure where i belong!!

[Wantabean]

hey girls :wave:
could someone help? im not sure where i belong at all
Cameron was born at 38weeks by crash section due to reduced fetal movements. he was very very ill when he was born and spent time in stirling royal nicu. we came home in time for christmas they were completely baffled as to what happened to him but we are still waiting on test results to come back. i have lost 5 babies previously but they think its unrelated and just a case of bad luck (how much can one person have?!)
anyway i would love people to talk to that can relate to having a poorly baby so could someone point me in the right direction please? xxx

 

[pink.crazy]

That must have been such a stressful time hun, I know someone who had a similar experience and it's because of the placenta, it had deteriorated and started to come away from the uterus. How long did they say before you get your results?
I bet it was fantastic having Cameron home for his first Christmas! How is he doing now?
xx

 

[Cazzyg]

Hello - my daughter was in Stirling too. She was born at 36 weeks and ended up in the nnicu after she developed breathing problems a couple of hours after being born. I can relate to having a baby in there when going by their gestation all should be fine. It felt like no mans land. Not a preemie, but not a 'normal' newborn either.

Congratulations, by the way and I hope you had a lovely first Christmas at home together.

 

[Marleysgirl]

Hi Wantabean

It doesn't really matter where you belong on this forum - you are very welcome here

Talk to us, and we can provide our experiences/advice in response

 

[Foogirl]

You're more than welcome here, we've all had poorly bairns!

Also, have a look at Bliss website, you might find some help there too.

We run a Bliss support group at SRI, you're welcome to come along to that too.





ps.... CazzyG Happy new year to you. I trust all is well?

 

[Cazzyg]

Happy New Year to you too. Life seems to be crazily busy at the moment but all is well.

How is Abby? And how are you finding being back at work?

 

[Wantabean]

aw thanks girls. i always feel quite shy on this lol Cameron had an appointment with his consultant today and they are happy enough with his progress. he has a tummy bug and a cold, poor lil guy! they are a little concerned about him being quite light even though a. he is a whopping 8lbs8!! and b. he has gained weight steadily since we left nicu. there are a few questions about his hearing coz of the antibiotics he had. i have a consultant meeting on the 17th so hoping they will have answers then. got told today that wen cam was born i had approx 20mls of his blood in mine but that didnt account for the amount of blood missing from him. they said it just disapeared so another question to be answered lol i didnt have any obvious problems with my placenta, though a little part of it was yellow so has been sent tp yorkhill for investigation. how is everyone? xxx

 

[Marleysgirl]

Questions about Cam's hearing, you say?

Feel free to talk to me - Andrew has been diagnosed with auditory neuropathy spectrum disorder resulting either from his premature birth, treatment he received on NICU, or maybe even his pre-birth cranial bleed. He got his hearing aids today, and we're hoping that he will show good signs of response.

 

[Wantabean]

thanks he is getting another test at 8 months but if its not improved by the 19th they are gona look into it further. he doesnt respond to me dropping things (which happens a lot lol) or any loud noises
really glad i came on here as i feel like there is a lot more support in here than i realised xxx

 

[Foogirl]

Happy New Year to you too. Life seems to be crazily busy at the moment but all is well.

How is Abby? And how are you finding being back at work?

She's doing fine. Still very limited mobility, but talking like a two year old!Work is pretty good. I'd forgotten how much I like it.

really glad i came on here as i feel like there is a lot more support in here than i realised xxx

We've all been through such different, but similar experiences, there is always someone who can offer advice, or just a soggy shoulder!

 

[Marleysgirl]

Andrew had an inconclusive "newborn hearing test" just before he was discharged (so at full-term, as he was discharged 2 days after DD). He went back to have the same style of testing - whilst still/asleep - a month or two later (sorry, can't remember, brain like a sieve!) and the test showed that his brain was not responding in the expected way to sounds played into his ears. From this they surmised that the problem was probably with his auditory nerve, hence the diagnosis of ANSD.

Nothing happened other than a recommendation to start using baby-signing for about five months, when he started to return to hospital for behavioural testing - this is where he's awake, they play sounds, and look for signs of response. I found this type of testing incredibly frustrating! They play a sound on one side and if he turns to seek the source of the sound, a hidden dancing puppet is displayed as a reward. Problem is that even when he is facing said puppet, he's not interested in it, it's boring & old-fashioned to him! He failed miserably at the behavioural tests therefore, partly due to their useless testing system, but mainly due to his delayed development anyway.

In August he was given hearing aids for the first time, set at an "average" level. We lasted a month before giving up on the trial - he still wasn't even sitting up at that point, so it was difficult to assess whether he was hearing any more as a result of the aids, which he kept pulling out.

We decided to wait until December to try again, and Andrew has come on leaps & bounds with his physical development (sitting, crawling, pulling himself up to standing). Today he got his hearing aids again, set at a slightly lower level (65dB). He still wasn't interested in the puppets, but he was searching for the source of the test sounds and noticeably "stilling" when a sound was played.

Despite all the above, we (as parents) feel that Andrew has a better level of hearing than the tests would suggest - he's just bloody-minded! Sometimes he will hear us call him across a room, other times he won't; sometimes he startles to loud noises, other times not. We wonder whether his time on NICU (3 months) conditioned him into being in his own little world, shutting out external factors including noise.

Anyway, that was all a bit of a ramble! I'd be interested to hear how Cam's hearing tests progress, so please keep me posted.

 

[Foogirl]

Despite all the above, we (as parents) feel that Andrew has a better level of hearing than the tests would suggest - he's just bloody-minded! Sometimes he will hear us call him across a room, other times he won't; sometimes he startles to loud noises, other times not. We wonder whether his time on NICU (3 months) conditioned him into being in his own little world, shutting out external factors including noise.

Until Abby had her tests, we were concerned she may have hearing difficulties for exactly this reason. She can literally drift into her own world. You can actually wave in front of her and you get nothing!

When she is like this now, we just say "AbbyAbbyAbbyAbbyAbbyAbbyAbbyAbbyAbbyAbbyAbbyAbbyAbby" getting louder as we go until eventually she will look at us with a cheeky smile. She's heard she is just ignoring us.

I think she gets that from her father......

 

[_Vicky_]

dint want to read and run - I was in your shoes having a poorly baby that was full term. Fynn was in NICU for nearly three weeks after he was born at 37+4 - the ladies here were fabulous support for me at that time and i will be forever grateful.

I dont post here nowadays - Fynn is fine - but I do pop over and see how all you guys are doing now and then

xxxxxxxxxxxxx

 

[PrincessPea]

Hey Wantabean,

Welcome, I am also a relative newbie. My baby was in NICU at SRI at the same time you would have been in, Jessica was in there from 21st Sept and got out on 20th Dec!!

We also have a question mark over Jessicas hearing, on her first test she had 'no signal' and on the repeat one the test on both ears was 'incomplete' but her brain activity was almost 100% and it kept coming up 'non physiological error' which apparently is interferance from brain activity! So we have now been referred to the Sensory Centre in Camelon.

To be honest I agree with Marleysgirl - Im not convinced by the tests, surely the very fact Jessica was 13 weeks old by the time they did the test means that she would have more brain activity and then this would in turn interfere with the test ??(by their own reasoning). Plus I also wondered if her time in the NICU got her used to louder noises etc and that is why she isnt as quick to respond to them, although she does follow your voice a bit and sometimes jumps at louder noises but surely this would be normal as she is only term today??? AArrggghhh its all so frustrating. It doesnt help that the initial tests are done my a midwife and a nursery nurse who are 'only trained to use the machine' and therefore cant answer your questions.

Sorry for my rant! and back to my original point 'Welcome Wantabean!!'

 

[poppykat]

Hi there!

I had Chloe at 34+6 by crash section (such a horrible experience isn't it ) because of reduced movements and severe fetal distress. She was in special care for 8 days before coming home.

They were also concerned with Chloe's hearing to begin with and I was worried as she didn't respond for a long time but she is now fine and is actually very sensitive to sound now.

Everyone in here is lovely so help you find the support you need xx

 

[Wantabean]

see cam will completely ignore you if you call him or make noises at him and doesnt startle at loud noises but he seems to relax wen music is playing?! i dont know but ill deal with anything if and when it happens. thanks all for my kind welcome and i will keep all updated. got to run just now but ill be back later lol xxx

 

[you&me]

:wave Hiya wantabean.

Congratulations on the birth of your beautiful boy...wasn't you one of our November Sparkler's??

 

[Wantabean]

hi yeah i was lol was worried he would have arrived in december lol xxx