Monday, 30 July 2012

Just One Thing - That Would Have Made Your NICU Journey Easier

I asked my NICU parents yesterday to name one thing that would have made their NICU journey that bit easier. The answers, I have to say, broke my heart. Some of these things are so easy to achieve. I am wondering if, those of us who have finished their journey, don't realise how universal our wishes are. I know I thought I was just over reacting when I wished there was somewhere I could make a hot brew, or have my transport covered to an extent. So please read and let's try and come up with some solutions.

For me I would have to say subsidised bus fares, I would love to have to never leave her but I have four more little monkeys at home to tend to.
Charlotte

When my son was in the NICU for 5 weeks I got to stay in the hospital but in a diff room. I was on the paediatric floor and they gave me cards for my meals, which was a total blessing and I am not grateful enough to that hospital for them doing that for me. But my next thing I would love is now I have my son who will be 2 years and 3 months when his sister will come if she is term. Now if she comes earlier my thing would be to have hospital day care for him while I would go see his sister or be able to have him stay w me there if she did come early.
Heather


This may sound a bit silly but for me it would have been consistency. Some nurses were all for kangaroo care, some wouldn't let me have him out for a hug at all, some liked to have him swaddled before I could hold him. Same with feeding advice, and the breast feeding support was lack lustre at best.
Leila

Accommodation on-site (preferrably free or heavily subsidised as it is dreamworld!) so you are literally minutes away. With a really good shower! When Alice was in PICU I did get this (the room, not the shower) in a house run by the Sick Childrens Trust and to this day, it is one of things I am most grateful to as it truly made the difference and let me sleep not least as the rooms had a direct line linked to your child's ward/cubicle. Also a fairygodmother to sort out all the fiddly bits. I spent a lot of time in NICU running around sorting out job things, contract loopholes and finances and as no one could tell me what I was entitled to, went back part time for a bit in the feeding and growing stage. At the time I was doolally with it all but now thinking back it breaks my heart a little at loosing this time. I wish someone could have sorted it all for me, to give me much needed time in the unit.
Amy

If the midwives on the delivery suite (who were lovely btw) and drs ( not always so lovely) could have appreciated I really wanted to spend all my time with my babies and that when I was back in my room I really wanted to sleep ( as you would at home). What I didn't want was them phoning the unit and telling me I needed to come back to have medication that I had waited around for. Or, even after I had told them that I'd be back at x time, that they'd be available and instead of being able to sleep I had to wait for bp to be done or medication - frustrating!
Rebecca

A place you could leave your other kids. My husband works and I've had 4 prem babies n its hard to find someone to have your kids everyday even if you had to pay towards it would be better then them getting bored after ten minutes.
Sara


Consistency between hospitals. Being able to tube feed in Lexie's first hospital and hold her when we wanted (as long as reasonable) to going to somewhere we had to ask permission to get her out of the incubator and no tube feeding by parents allowed, was heartbreaking!

The 2nd hospital was brilliant, don't get me wrong. Just the complete change in rules and seeming removal of responsibility from us as parents was really distressing at the time.

Katherine

A crèche within the unit for older siblings would have been a godsend! My husband used all his paternity leave and holiday being at home to look after our eldest while I was at the hospital with our baby. If I could've taken her with me to the hospital then my hubby would've had time at home when my baby came home.
Holly

The thing that would have helped us would have been a microwave in the family room! I'd have loved to have eaten something better than pot noodles and sandwiches every day!
Sammantha

A fridge in the family room as intensive care was sooooo hot and everythings was just disgusting when you came to eat it, and the hospital food was really expensive.
Layla

When Isabella was at Leeds they provided (from the canteen) 1 hot meal & drink every day to all mums that were breastfeeding/expressing. However, this wasnt an option at Halifax. In fact there canteen closed at 5pm & wasn't even open weekends. So I guess better access to food/drinks for parents. I also feel that some sort of easy access to counciling would have been good, both at the time & after.
Karen    

Subsidised B&Bs close to the hospital. George was in last winter and is was always worried that if it snowed/was icy I wouldn't be able to get in. It would need a fridge in the room if you were expressing etc
Tory

Somewhere to go to cook something, rather than eating at the hospital as was so expensive, and free parking for NICU parents, we didn't chose to have an early baby. 102 days payin for parking was expensive and the money could have been better spent elsewhere.
Danielle

Designated / free parking spaces for people in SCBU. We have enough to deal with without spending 30 mins looking for a space when drs are doing rounds. And the cost is so much!! 
Michelle

I agree that knowing you were entitled to meals, i didn't know until after i had stopped expressing. I also think that being able to get help with the additional costs, travel or accommodation would be good. But overall i think that the thing that makes the nicu journey easier is good staff, or more specifically, good communication with the staff.
Sarah

Free meals and or subsadized travel would help. I had to take 2 buses, a train and a bit of a walk to get to my daughter her first 3 weeks. I had to choose due to money issues weather to see her or eat. She won and i didnt eat for 3 weeks till she was moved to a more loca hospital. My milk supply dwindled and i spent the next 14 months on domperidone to enable me to continue expressing milk for my very ill baby
Claire

Somewhere where I could let my other child play or relax whilst I spent time with the twins
Emma

A room so I could have stayed in, breastfed and established feeding earlier - interestingly our local unit has just opened a dedicated transitional ward for women whose babies need special care but are not very high risk, so that mum and baby can stay together - not perfect because dad misses out, and the room is not private, but much better than being completely separated and waking up on a ward full of women and their babies when you haven't got yours.
Claire

We didn't have free parking or free meals or a family room. There were no private places to establish breast feeding or to pump milk - if the doctors were doing their rounds we had to go onto the post natal ward and pump there, surrounded by women and their newborn term babies. And there was only 2 rooming in rooms so you only got your 2 nights - Theo ended up having his NG tube down for a week longer than necessary because we had to wait to room in and I wanted to fully breast feed so he wasn't to have bottles, much to the irritation of the nurses. Also, somewhere for the older siblings to be welcome too - they were seen As a nuisance most of the time.
Chrissie

Transport as I had to drive myself in twice a day even though i wasnt physically ready - couldnt afford taxi due to distance and would of taken 3 buses there and another 3 back
Amy              

3 one things? A good relationship with staff who are responsive to maternal relationship building, a local milk bank or access to supply, a larger neonatal area so women can stay with their children - whether beds or at least space for a comfortable chair (perching on high stools for hours does not count as a comfortable chair!)
Charlotte

A room on the unit with a fridge to keep a sandwich in and comfy seat to sit.and a kettle to make a coffee instead of spending a fortune in the canteen.
Samantha

Consistent advice & information from the staff would have been my biggest wish. An introduction to the new ward when she moved hospitals - i didnt know there were tea facilities or a microwave     
Emma

comfy Seat next to his incubator would have been amazing.
Niki

I would love to hear other people's thoughts on this too, maybe your unit or local area had a solution to these. Please read and comment! 

   
   
    

4 comments:

  1. Great post.
    I have to say, our local unit had alot of these things. free parking, a great tea and coffee room with a fridge. free meals for parents rooming in. Facilities for older siblings, including a playroom and dvd player.I do think it would be great if they could subsidise bus fares and maybe have a place that could reserved for nicu siblings in the hospital creche. that would be wonderful! I may just mention it to them!

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  2. I feel very lucky after reading these comments, when my 4yo was in scbu, there was armchairs scattered around the unit, a feeding 'zone' a parents kitchen with a nice table and chairs, kettle, microwave and fridge/freezer. Also subsidised parking and meals for mums that had been discharged and for visiting dads.
    Luckily I wasnt discharged until my son was ready to come home- due to the fact that we where 60 miles from home- however I strongly agree with one post above- the reason we didn't transfer to a closer hospital was that the local hospital did not allow parents to tube feed and carry out the cares themselves- consistency please- if this is ok in some hospitals it should be ok in all- also more rooming in facilities - especially for families who have spent weeks/months there.
    One other point would be more breast feeding support- I felt very pressurised to put my son on bottles to 'hurry him home!'- even when I asked for help pumping as little came out I was just told where the formula was!

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  3. I feel very lucky after reading these comments, when my 4yo was in scbu, there was armchairs scattered around the unit, a feeding 'zone' a parents kitchen with a nice table and chairs, kettle, microwave and fridge/freezer. Also subsidised parking and meals for mums that had been discharged and for visiting dads.
    Luckily I wasnt discharged until my son was ready to come home- due to the fact that we where 60 miles from home- however I strongly agree with one post above- the reason we didn't transfer to a closer hospital was that the local hospital did not allow parents to tube feed and carry out the cares themselves- consistency please- if this is ok in some hospitals it should be ok in all- also more rooming in facilities - especially for families who have spent weeks/months there.
    One other point would be more breast feeding support- I felt very pressurised to put my son on bottles to 'hurry him home!'- even when I asked for help pumping as little came out I was just told where the formula was!

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  4. Can't disagree with much of that - and it shows that the issues are generally the same wherever your baby is. Consistency as an issue really stands out for me as I too found it distressing being able to tube feed my daughter at the Level 2 hospital she was transferred to after birth - only to have that taken away from us when transferred to the Level 1 birth hospital. It's also why I like the idea of the parent passports I keep hearing about.

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