Mum of a prem baby: what would have helped?

[justhayley]

Hiya,
My DS Noah was born at 35 weeks, weighing 5lbs. He's now a healthy little thing and at 30 weeks I'm thinking of starting a charity for premature babies and their parents.

I'm going to start by raising money for the SCBU that cared for my son.
However thinking a bit further along the line, as a parent of a premature baby is there anything that you needed to make the whole experience easier?

I'm thinking things like breast feeding specialists coming in to the SCBU unit to have a season on the issues we face trying to feed.
Tiny donated / knitted clothes when the time comes for the little ones to be covered in something softer than tubes, extra prem sized baby nappies (our hospital supplied 2, & none of the local shops seemed to stock them).

Anything really - that would have helped you and/or baby, whilst in hospital and once home.
Just want some ideas of how a charity could help alongside raising money for equipment.

Thank you.

Hayley xx

[SufferingLampreys]

The first thing thay springs to mind is abbysitters for our other children
I don't drive so the only way I could visit our daughter was to get a babysitter so dh could drive us in. Not only did it cost is a fortune but it meant there were days we couldn't get a sitter and I couldn't see our baby.

[justhayley]

Hiya thank you, that's a great idea. My DS was my 1st so I would have never have thought of that. Must have been tuff. I was lucky that my SCBU had just opened a transitional unit that was empty so I got to stay in the hospital just 2 floors down from my baby while he was being treated. A friend of mine an a 32 weaker and checked into a local hotel so she could go back and forth with breast milk every 3 hours and ended up running up a Hugh debt on a credit card.
I'd love to raise enough money so share it out between the families who need extra - or have a bank of babysitters all paid for, for situations like yours.

How's your little one now?

[SufferingLampreys]

She's fine. She's six and doing we. Physically fine, struggling academically but considering she was given 5% chance of survival we are thank full that is all. We doubt she'll ever win a Nobel science prize but she'll manage enough to live a normal life.

I wouldn't have stayed at the hospital even if they had had space. My two others were 20months and just turned 3 and I had already spent a month away in hospital so felt they needed me more. (At one point my 20 month refused to acknowledge me)

I think however you do it it ends up costing parents of prems a lot of money be it for petrol parking and babysitters or partners not being able to work due to needing to care for siblings or because of stress. We are still struggling because of it. You know how debt makes a hole that's hard to dig out of.

When my children are older I would happily provide some free babysitting for someone who was in my position. So they could have one less worry

[KentuckyFriedChildren]

Yes to babysitters and yes to the breastfeeding specialist pref one that specialises in teeny feeders. Preemie nappies are not hard to get anymore but I guess it must depend on the shop? Our scbu already provides teeny clothes for in hospital but it would be nice to have a small stash for going home with as preemie clothes are so expensive ime and not all babies will fit newborn or even tiny baby clothes for a long time once they are home. I know neither of mine were in newborn til 6 months but were both home within a few weeks and we just had to make do with tiny baby clothes that were too big. I also think that there should be more emphasis on what happens in scbu/nicu and how to cope/prepare when you are pregnant. Some sort of leaflet to go along with all the other bumpf you get from the midwife. I found it very hard first time round and if I had at least had some sort of clue what it was all about before hand it may have been less terrifying. Some info on what all the tubes are for etc and the lingo would have been helpful as I think when you arrive there to see your tiny sick baby after the trauma of an unexpected prem birth you can't take in all that kind of stuff. Parents really should be made more aware of the reality of special care. There is a mention in the latest ready steady baby (am pg now as well) but its not enough.

[SouthernComforts]

Lovely idea OP, my dd was a 28 weeker, I had to buy everything from day 2 because our local SCBU only provided nappies and cotton wool for 24 hours. I remember hobbling into Boots 36 hours after EMCS and searching for cotton wool balls.

Maybe a box with a small pack of prem nappies, maybe 2/3 days worth, cotton wool balls, sterilised water etc. It would be quite hard to include clothes because of the huge weight range of prems.

And Yy to a leaflet about what to expect
depending on gestation. Practical advice rather than the scary facts the Drs tell you.

Also, dd stayed at 3 different hospitals and all of them had only one or two sterilisers and breast pumps. Maybe that could be something to fundraise for.

I'll come back if I can think of more.

[BellaVida]

I had preemie twins. I unexpectedly went into labour and had nothing with me at the hospital, a small kit just to get you through that first day would be great. DH was too worried about the babies and me to leave the hospital and fetch things and we had no family really nearby.

After I left the hospital it was so hard juggling my other DS and still having the twins in hospital and my DH had gone back to work. Then one baby came home before the other, so I had to split myself 3 ways. Luckily a family member stayed for a few weeks, but otherwise I would have been stuck. So agree with childcare or accommodation close to the hospital.

The other thing was breast feeding and expressing milk to take and store at the hospital. The equipment was very expensive- pump, storage, cool bags etc. so any contribution or advice would have been good.

For the babies, they didn't have clothes for the first week, so not an issue, but we didn't have hats small enough. The nurses used medical tape to make them fit! Plus the nappies they needed were so small, you could only order them from the chemist. A stock of those would have been very helpful.

It was very hard seeing my babies so small and sick. Just talking to or reading stories of other parents who had gone through the same thing and how they coped, would have helped enormously.

[justhayley]

Thank you so much for all your posts.
I will keep you posted on how things come along x

[AitchDee]

Things that would have helped me were to have food and snacks provided, subsidised travel/parking costs and subsidised child are for other children.

My twins were in for 17 weeks in a hospital an hour away from home. It cost a fortune. Petrol costs, food costs, lost wages for my husband have to care for our others.

I don't honestly think we could do it again.

[AitchDee]

I never had problems getting nappies. My twins weighed a pound at birth so they were provided, and tesco sold them from 2lbs plus. Our unit also had a good supply of clothes for baby to wear once they we able. I think mine were around ten weeks before they wore clothes though.

[SouthernComforts]

Aitch, agree with everything you said, but my dd weighed 1lb too and the SCBU only provided those tiny nappies for one day, after that I bought the smallest available and dd just lay inside them, they came up to her shoulders!! Then when she was a bit bigger I had to fold them down.

So more tiny nappies would be a must for me.

[ImperialStateKnickers]

and [shocked] that so many of you are having to pay for parking. ddtwins are 13 now, but I understand the hospital where they were born still offers parking permits for one car when children are in hospital for more than a week. Otherwise it would have been £8 a day.

[SouthernComforts]

There were parking permits available but trying to find the right person with the authority to give us one was a PITA so I took my chances at the local hospital (10 weeks) and didn't pay. The fine for a first offence was £6 - the same cost as paying for 24 hours. I never got caught.

[bytheseaside]

great plan op, and great ideas here. I would add: sleepable-in reclining cotside / family room chairs. amazing when you are camping out there all hours, although I know more expensive than some of the ideas above. depending on the type of unit, cd players and stock of relaxing music, which we would have liked. on-site alternative therapist visits stress relief for parents like aromatherapy, hand massage, acupuncture. good luck!

[Mandy21]

I had twins at 27+6 who spent time at 2 different units, 19 days at a unit 40 miles away, and then 6 weeks at one closer to home. Both were utterly fantastic but for what its worth - this is what I think would have been helpful -

1. A leaflet explaining some of the terminology that is used on the units (eg CPAP and the other abbreviations that I can't remember off the top of my head). Would also have been useful to have an explanation of what care we could expect - as outpatients / through HV / clinics.
   

1. An option for retrospective antenatal classes - I missed all of my planned antenatal sessions so didn't have that network of new mums that you get through those regular classes, but more importantly, all the advice you receive about what to expect when you take your baby home, feeding, bathing etc - I still needed. I understand that the labour / actual birth would have been a bit redundant, but parts of it would still have been really useful.
   

1. Parking permit - got one at the 1st hospital, but not at the 2nd. £6 a day for 2 cars (me during the day and DH joining me as soon as he'd finished work) soon adds up.
   

1. Breastfeeding / pump hire advice (I did get this on both units but realise from the posts that not everyone does).
   

I'm surprised to hear that people had to buy their own supplies - the units we were on (as I day, 2 different ones) supplied absolutely everything for 8+ weeks (for 2 babies!) - nappies, cotton wool, sterilised water, babygrows, knitted cardigans and hats, blankets, sheets, nipple shields, electric breast pump (for a limited time). They were only dressed after about 6 weeks so we didn't need many clothes. Like I said, they were brilliant.

[BarbecuedBillygoats]

Yes we got parking permits too at our last hospital but even £10
a week adds up.
But we were already skint by that point because of the huge amount we had payed for the 6 weeks prior

[Kewcumber]

I have a 26 week premmie but I didn't "inherit" him until he was 11 months so no experience of early days. However if you want any tiny clothes knitted justhayley to donate I'd be happy to knit some.

[ipswichwitch]

We were lucky. Our 34 weeker was on Scbu for 3 weeks (weighed 4lb5, delivered by cs after finding out we lost his twin). They supplied us with nappies, cotton wool, clothes etc until we took him home. I also had access to a breast pump and my own attachments which they kept sterilised for me. They had a great bf advisor too, and they would get me meals off the kids ward ( obviously whatever the kids didn't eat- they didn't literally steal their food!) as they said I was BFing so they wanted to make sure u was well fed.
They were wonderful and made a horrible situation more bearable. More units should operate this way, and I'll second the suggestions already made in here.

[LeBFG]

It's a totally mad situation where people are being expected to source premmie nappies and supplies two days after a surprise early birth . This shouldn't happen anywhere in the UK! And profiting from it by charging for parking....I'm gobsmacked quite frankly.