Do you think preemie families should be given financial help?

[Lil-woowoo]

Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x

 

[bunnyg82]

absolutely do. In fact, as I have been following yours and Alex's journey I've often thought how people with babies in nicu should have help. I just about think we can afford to have a baby but I can't imagine how we'd cope having to pay out all of those things you mentioned.

 

[honey08]

not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc x

 

[Foogirl]

Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x

Wow, that's quite some journey. Fingers crossed he'll be home soon.

not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc x

Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.

 

[premmiemum123]

Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x

Wow, that's quite some journey. Fingers crossed he'll be home soon.

not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc x

Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.

Agree the hospitals can be quite generous especially when you are leaving. I was allowed to take some milk, everything in Emily's cupboard and they gave me loads of syringes for all her medicines. As for Nappies, cotton wool, cotton buds and wash stuff, we had to supply it. It was free for a week but then we were encouraged to buy our own. I didn't mind though, anything for our little girl...

 

[Marleysgirl]

Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.

Agree the hospitals can be quite generous especially when you are leaving. I was allowed to take some milk, everything in Emily's cupboard and they gave me loads of syringes for all her medicines. As for Nappies, cotton wool, cotton buds and wash stuff, we had to supply it. It was free for a week but then we were encouraged to buy our own. I didn't mind though, anything for our little girl...

This is where a thread such as this gets interesting - "do mothers of premmies need additional financial help?" It obviously depends on the particular unit as some require you to supply your own stuff, and others discharge you with freebies!

In ours, all nappies, cotton wool & buds and botty cream were supplied until discharge. There was some clothing available, you could choose whether to use unit clothes or your own (but not a mixture as that was confusing to staff!).

We weren't told about raiding the pre-stocked cot cupboard on discharge, but I wouldn't have bothered anyway as I had tonnes of stuff ready at home.

Syringes were supplied with the discharge medicine.

I saw that babies on formula milk were discharged with some milk, and I've been brought some bottled Nutriprem2 by the outreach midwives (to act as standby). As I was feeding Andrew frozen EBM, they gave me some boxes of the fortifier sachets to use for the first few weeks.

 

[emspaeth]

I don't think that just because you had a preemie you should have be able to get financial support. Some preemies are born and go home 2 or 3 days after birth. I don't think that is a preemie has health problems then yes but I think any baby with on going health problems should get help too!

 

[x-amy-x]

An old thread but ill add my 2p worth

*some* support would be helpful... and not particularly in the shape of cash. Lunch vouchers maybe? It is expensive. Luckily i live close to my baby's unit but its still costing us a fair bit in travel. And once i'm there i very rarely eat. I couldn't afford to. Having a baby in neonatal means that making yourself food at home in advance isn't really high up on the list of priorities. Even 6 weeks on... ive still not managed to get myself into a proper routine. Working on it though!

 

[Lottie86]

Some sort of support would have been good be it help with travel costs, food vouchers etc.
Before Iona was transferred it was costing me £100 round trip in a taxi to visit her as I couldn't drive due to having had a csection and my OH was back at work, certainly adds up quickly especially on days when I had gone back home and she then took a turn for the worse and I had to get a taxi back in again.
Whilst my travel costs are now lower as we are living in hospital with Iona we are living on takeaways and microwave meals as that is the only cooking facility we have in the hospital's parents accomodation and it's costing a fortune!

 

[AP]

I don't think that just because you had a preemie you should have be able to get financial support. Some preemies are born and go home 2 or 3 days after birth. I don't think that is a preemie has health problems then yes but I think any baby with on going health problems should get help too!

My intent on this old bumped up thread was regarding preemies who spend weeks and months in neonatal units....

 

[Foogirl]

I think the point, albeit clumsily made was, financial support should be made for parents of any newborn, whether preemie or not, if they spend a prolonged time in hospital. For example, even if Iona had gone full term, Lottie would have faced the same issues during those first weeks in NNICU. I'd have been very cross if Lottie had lost out on any help because of the lack of a "preemie" lable.

 

[25weeker]

At the time of this thread been written I was pregnant and blissfully unaware of prematurity and all it's complications!

 

[xxClaire_24xx]

we were actually really looked after at the hospital if i went in at 10am and was staying til 6pm when Peter came to get me and someone else could collect me from school we had a wee kitchen we could use and there were some sandwiches and biscuits and teas and coffee etc

but tbh there were a few drug addicts babies in nicu and they were getting EVERYTHING paid for them xx

 

[AP]

Such a hard one that Claire. On one hand baby needs that support as does mum I guess, no mother, albeit drugs or whatever, should have to experience NICU.
On the other hand it made me so sad because these parents had no job and freely came and went when they liked to see their baby. My OH had to work though... where's the fairness there?....

 

[Marleysgirl]

Ooooh, an old bumped thread ...

I'll add in a little update. I was invited to join the NICU Parents Group at my hospital when Andrew was about 6 months old, and I managed to attend a few meetings before having to give up due to work pressure. I raised the issues about lack of counselling help and lack of information about practical stuff, and as a result of the Group there is now an NICU information pack handed to all new parents, explaining about parking permits, kitchen etc. There is also now a proper lounge & kitchen facilities that all parents can use, not just those rooming-in. So I am glad that I've managed to help newer Mums around here

 

[xxClaire_24xx]

Such a hard one that Claire. On one hand baby needs that support as does mum I guess, no mother, albeit drugs or whatever, should have to experience NICU.
On the other hand it made me so sad because these parents had no job and freely came and went when they liked to see their baby. My OH had to work though... where's the fairness there?....

oh no i def agree i think all babies def deserve the same treatment as each other for sure but what i meant was like you most of them dont work but got paid to go and see their babies when they wanted and like you say our OH had to work xx

 

[vermeil]

hmm here in Quebec I was able to delay the start of the yearlong maternity leave until baby came home. It`s an obscure clause but it was automatically accepted.

In the four month gap I received health leave (basically what you get if you have to leave work for health reasons) which filled the gap in between. No one doubted when I said there was no way in HECK I would be able to work knowing just how sick my son was....

Being the breadwinner, without the help we would never have made it through. Even with the generous maternity leave (70% of income) all of our savings had melted away when I went back to work when he was 18 months old.

Here in Quebec on top of that, parents of preemies born 28 weeks or sooner receive the supplement for handicapped children for two years. It`s a good amount and really helped too. The nicu nurses jokingly said the parents were the ones handicapped by the high costs of having a sick baby

And of course all of baby`s nicu stay (which I calculated at over 100000$ had we lived somewhere without health coverage) was free as all healthcare is here. Had we been in the states for example without insurance we would have had to sell the house.

Guess I'll remember all that next time I complain about our high taxes

edit - just noticed this thread is 3 years old haha! Well perhaps this info can help others in Canada. One thing I remember vividly from the nicu experience was all the dang bureaucracy and paperwork...

 

[Foogirl]

I would love for a similar scheme to be in here, but the law says your maternity leave must start when LO is born. You do have the option of tagging some parental leave on to the end of it, but that is unpaid. Thankfully we could afford to do that, but others can't.

I'm also glad our healthcare is free!

 

[Marleysgirl]

hmm here in Quebec I was able to delay the start of the yearlong maternity leave until baby came home. It`s an obscure clause but it was automatically accepted.

In the four month gap I received health leave (basically what you get if you have to leave work for health reasons) which filled the gap in between. No one doubted when I said there was no way in HECK I would be able to work knowing just how sick my son was....

Here in Quebec on top of that, parents of preemies born 28 weeks or sooner receive the supplement for handicapped children for two years. It`s a good amount and really helped too. The nicu nurses jokingly said the parents were the ones handicapped by the high costs of having a sick baby

I would love for a similar scheme to be in here, but the law says your maternity leave must start when LO is born. You do have the option of tagging some parental leave on to the end of it, but that is unpaid. Thankfully we could afford to do that, but others can't.

This sounds a fantastic idea - sick leave until your baby leaves NICU, then the maternity leave period starts.

(And the DLA for <28wk preemies would be good too!)

Perhaps this are measures we should consider campaigning for? Does anybody have any experience of successful campaigning? Is an ePetition perhaps the way to start? What does anyone else think? (Maybe I should start a bespoke thread for this - Vermeil, a link to the Canadian guidance online might be helpful)

 

[Lottie86]

I don't agree about automatic DLA though as DLA is for people who *have* a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.