NICU babies

[MumFifi]

Hello,
Just wondering if anyone out there has had a NICU baby, and wants to chat about how they are finding things once the wee one is home. Our little one spent 2 months in NICU and came home before Xmas. But he is still not well and has lots to deal with in life. Find the mummy groups just not relevant.
Anyone want to share experiences?

Hi Mumfifi

I think many, many of us had babies in NICU and we knew it would only be the beginning of difficulties but that depends on the condition or diagnosis of your baby I guess.

Since the early days were not like those of other mums, it is hard to relate to the 'normal' experience. For me, DS1's birth was the most traumatic event in my life and I can't understand/ hate all the happy, optimistic clap trap that accompanies childbirth. I've since had DS2, which went fine, but I'll always feel the same way about it.

Did you have any particular questions?

I also had a NICU baby and am still struggling at times to deal with it - and her long term difficulties. Agree it is irrelevant (and often lonely) in the NT world!

Is there a BLISS support group locally to you? My area has a meeting every month and it's great to meet other babies and toddlers who have been born early or with problems. It's also nice to meet other parents who know what the nicu experience is like.

Hi MumFifi!

My lo spent 4 months in NICU last year. Was obviously thrilled to take him home, but felt very much like he was transferred from high dependency to home with me as the only nurse!

Guess I would say, firstly think about all those days in NICU. What would you have given to take your baby home?

I can't do "normal". I have had to distance myself fom some of my friends with "normal" kids, not their fault, but sometimes I just can't deal. Our lives are so different.

But I've made new friends too. Lots of lovely mums in NICU and support groups including Mumsnet.

You have to fight a lot too, to get the care/services you need for your child.

In my case, I'm fighting work too, to go back part time.

But life's not all bad. It sounds cheesy, but we're lucky our children our born in a place (UK) where we have medicines and life saving technology. (okay, you caught me on a good day, sometimes I just rant about how crap it all is....!)

Well my NICU baby is now a rather large and un-cute 16 yr old who is supposed to be revising for GCSEs but is actually watching something on youtube - again. He had about 11 hours stewing in meconium and was a right old mess for quite a few weeks.
When NICU finally told us we could take him home, we were too scared. We camped out in a side room with him for three days until one morning we simply got up, packed out stuff, and went home. The staff were brilliant and laughed us out the doors...eventually.
I still find the period around his birthday and the month after a little difficult. I think I always will, but time does its work.
But depending on the long term outlook (mine has quad cp), yes you have a difficult and sometimes lonely path ahead - so take it easy on yourself and eat chocolate.
If it's recent and you perhaps feel a little confused, it may be useful for you to ask for a de-briefing by hospital staff who will go through all the notes with you and explain what was happening and why.
BLISS and (if you have a diagnosis) SN parents groups can be useful. And time...

Here's my experience:

My son is 15 months old and was in NICU.

I haven't been able to meet other mums as DS's hosp appts clashed with toddler groups etc when I was on mat leave. Now I'm back at work part time, I try and schedule his hosp appt for my days off.

I moved to the area a year or so before I had DS and was hoping I would be able to meet friends at ante natal etc, but due to the circumstances of Ds's diagnosis and birth, it didn't work out that way.

I know local mums meet up, but I'm not included, mostly becasue they probably don't know I'm here!

One mum has come round once, and we keep trying to meet up, but I'm always busy with hosp appt for my two sons. When she did come over, I cried for the rest of the day, as I found it painful as her daughter could walk, talk etc and it highlighted the long road we have ahead of us.

I hope to find a sn toddler group that meets on a day I don't work- no easy feat!

In the meantime I feel isolated and lonely as I have noone to talk to who knows what I'm going through, or who even wants to listen. I'm sure they think disability is catching.

I'm not saying your experience will be like mine. I think it all depends on sn provision in your area. Round here little exists.

MN is a saviour. I mainly lurk, but it is comforting to know that other people feel as I do.

No advice on NICU itself, but there are excellent support groups on NICU at the preecalampsia forum

www.preeclampsia.org/forum/

You might want to have a look.

NICU was the most surreal experience...DS1 is 4 now and his difficulties don't relate to his traumatic start (this just masked them for a long time). No specific advice to offer, but I know how hard it is and do find it comforting when I speak with other parents who've had the NICU experience...it's a very hard thing to explain. Would agree lurking is useful...there is a premature baby section on here...see Being a Parent on the Talk bit!

NICU was totally surreal - I often have terrifying or bizarre dreams about it even now. I can't use hand sterilizer anymore cos it brings back those memories!

There seems to be quite a few groups out there for parents of prem babies who have been in NICU/SCBU. What truly surprises me is that there is no support offered for other parents after baby has left NICU. I just had a crap, ill-informed HV!

There are no sn groups around here - poor dd sticks out like a sore thumb in our village

you're not in Dorset are you smashingtime?
We could travel in convoy! LOL!

Sadly not, sleepysox cos that would help no end!

If you are really having trouble finding any local groups, it might be worth ringing your local special school as many have community outreach services and contacts.
I'm in the home stretch of running the parents group at DS's school as he will leave in the summer. We are open to any parent of a child with special needs, whether it's our speciality or not (we are a specialist school for physical disability and sensory curriculum, we also have a small PMLD school within). Although we do refer on to more appropriate groups where it might help.
Very few of those who come along go on to send their children to our school. Probably because parents group is constantly interrupted by kids in very fast wheelchairs nipping in to steal the biscuits.