One Perfect Day

Yesterday we came back from our week away in Perranporth Cornwall. It was great. It was so lovely to get away and just what we needed.

I could blog forever about each and everyday of our holiday, But for now, I just wanted to share our favourite day. Our Perfect Day!!!!

This was a trip to the beach. It wasn’t our first trip to the beach, But our previous trip wasn’t as easy, as fun or relaxing as the one that happened on Thursday. Don’t get me wrong it was good, but not perfect.

Our girls like to explore as do we, but carrying Owen around the beach is back breaking. On the Sunday Alex and myself took turns to carry Owen. We tried to explore to caves and rock pools but Owen was just to heavy. As Owen can’t hold take any of his body weight it is not simply the case of him holding on to you, his legs were too tight to wrap around my hips. His head control is not great. Sometimes he goes so stiff it is like carrying an ironing board. When excited or upset Owen tends arch his back making him near impossible to hold, But we do. Owen is also a bit of a monkey and thinks it is hillarous to try to hang upside down. This is another way to hurt your shoulders and back. We often suffer from ‘Owey Shoulder’ as we call it.

So on our ‘Perfect Day’ we hired a Beach Wheelchair. We called up before we left our cottage to reserve one and picked it up from the car park on the beach. http://www.perranporthgardenscharities.org.uk/index.html

We used the firefly goto seat for postural support.

https://www.fireflyfriends.com/uk/goto-seat

With the help of the Beach Wheelchair which we nicknamed ‘Owen’s Monster Truck’ we had the most Perfect Day.

Owen enjoyed exploring the rocks.

Owen enjoyed going fast over the bumpy sand.

Owen explored the cliffs and went under arches.

Owen met the lifeguards.

But most of ALL Owen loved going into the sea. Owen loved the sound of the sound of the waves crashing. He giggled so much.Owen loved watching his Big Sister’s bodyboard, finding their screams of delight hilarious. I loved how I could watch all my children have fun at the same time without worry or without pain.

Most of all I loved this moment… Florence holding on to the chair whilst jumping over the waves. Both laughing and screeching together. This too me was truly perfect = One Perfect Day!

#SEND30DayChallenge Day 8 – What’s in your ‘Go Bag’ ?

Day 8 of the #SEND30DayChallenge is “What is in your ‘Go Bag’ ?

A ‘Go Bag’ is like a grown up version of a Baby Changing Bag, filled with the essentials for any trip or errand outside of your house.

This is a list of the contents of Owens ‘Go Bag’

  1. Nappies/Pads
  2. Wipes
  3. Spare clothes
  4. Spare bandana bibs
  5. Spare/Emergency Mic-key button
  6. Extra extension set, syringes
  7. Ear defenders
  8. Paperwork including proof of disability and campaigning leaflets
  9. Iron man or Spider man action figure – this is his ‘comfort toy’ which he loves to hold, press the button and hear the noises ****
  10. ‘Emergency’ Maraca – Second comfort toy (When the action figure fails) Owen loves to hold something in his hand and sometimes chew. This is perfect as he loves the sound also.

We also have to take other bags and for a day out lots of other bags and equipment.

Mainly alongside Owen’s Go Bag we take his abbotts rucksack with his feeding pump in. Plus all the items needed to go with this including; Owens feeding pump, milk, water for flushes and incase of needing an emergency button change, extra milk syringes, medicines, spare extenstions and giving sets and the pump charger.

****We have been questioned by a professional whether the spider man (this case iron man) is a suitable toy for Owen. Shouldn’t we just stick to something special needs and not force a mainstream toy on him. Owen has lots of toys both mainstream and special needs and for whatever reason Owen has chose this toy as his comfort. He also loves to watch the spider man and avengers cartoons on a Saturday morning… so there ūüėõ Sorry for going off topic.

It would be interested to see what is in everybody else’s ‘Go Bag’

Saving Nascot Lawn Children’s Respite Service Is Our Only Choice

So Monday was the night, The night we have been working towards for the best part of a year – Owen’s 1st Overnight stay at Nascot Lawn Children’s Respite Service.

At times we was not sure this day would come; Firstly because our request had to go to a two panel meetings but after the second Owen¬†was allocated 1 night per month. Owen then had to undertake ‘alot’¬†of tea visits to get Owen used to going back to Nascot Lawn after his beloved Day Care Sessions came to an end over a year ago when Owen started FB_IMG_1500569164784school.¬†I was worried Owen would not remember¬†Nascot Lawn he was unsure and a little confused as it felt familiar but all so different. I was also worried¬†Nascot Lawn would not remember Owen, in hindsight this is¬†ridiculous, As when we went back for our first visit the staff told me they were delighted Owen was coming back and had missed him immensely, they joked (I think) that all the staff were fighting over what ‘team’ Owen would be in, as they all were so keen to look after him. When we left that first meeting, we couldn’t get out the door for all the staff wanting to say hello and give Owen¬†a lot of fuss. Next time I had a long meeting without Owen to get his care plan just right. The staff member knew Owen so well it was not a one-sided¬†conversation, and her discussing Owen in a familiar way really helped out me at ease that he would be of course fine. Next came the many Tea Visits which they patiently allowed Owen to go at his own speed until we all felt ready for a full overnight stay.

After hearing the news that¬†Nascot¬†Lawns was said to close Nascot¬†called asking if I still wanted to go ahead with the 3 planned Overnight stays? I said yes immediately, We all had put in so much work at this point, Owen was ready!! I also was worried that if I refused we would just be struck off some list and we would get no further support. Another part of be did it out of defiance, The powers that be have not won yet, we are still fighting to keep it open and saying no would be like admitting defeat. Later I did question my choice though, am I putting Owen through all this for nothing? But I think that’s more of my own guilt rising than truth.

So Monday was here, His school transport bus came to pick him and his rather large bag as they would be dropping him off to Nascot after school, they would also pick him up from Nascot in the morning to take to School. I would not be seeing Owen from Monday morning to Tuesday after school. My emotions were all over the place, but I managed to hold it together.

After picking up the girls from school, instead of rushing home to meet Owen’s school bus we went to the park, the girls were thrilled to join their friends something we never do. Not only because we have to meet the bus, Owen tends to feel overwhelmed. I then feel overwhelmed trying to calm and look after him, while also trying to look out for the girls, help Florence on the climbing frame or Push her on the swing. Sometimes I wish I just had another pair of hands, someone to help me. Owen does accessible play equipment, but he hasn’t quite got to grips with that he can not go on this forever, if we stop spinning him on the roundabout, pushing him on the swing he goes into full melt down then we have to leave. But on this hot Sunny Monday afternoon the girls played as long as they wanted, even Beth came to join us. We ended up staying at the park till just before dinner time. It was great and something many people, and I used to take for granted.20170717_162158

Another unusual thing happened, I fed the girls and then managed to make dinner for Alex and Myself to eat at 7pm not the usual 9pm or after, when we have tended to all of Owens needs, still awake but calm. At 8pm my mum came over to watch the kids, so get this? Me and Alex went out for a couple of hours on our own!!!!

Don’t get me wrong, I am not blaming Owen for all the things we can not do, we have truly accepted this is just how it is, but it was nice, just for a little while to enter the other World¬†the one where people typically live. It was so easy and I had so much time. Probably too much time to think.

I missed Owen deeply, I worried that he wasn’t with me, did he miss me too? No one knows him I do! The guilt got to me. It was not easy and¬†I felt sorry for Alex that night, this was our time, But i wasn’t much company, my head was elsewhere. Maybe it was me that needed more tea visits.

The next day I stared out the window awaiting the school bus that would bring Owen home. ¬†He arrived full of smiles and giggling frantically, I knew he was happy to be back. I read his note-book from Nascot, he was fine – obviously he would be. He needed one to one care to enable him to have lots of reassurance and cuddles. He watched Mr Tumble and spent time in his favourite the sensory room. He had a fantastic time. Owen was a little sick after¬†a feed ( ongoing reflux problems) and didn’t go to sleep till 10.30pm, waking up gain at 2.30pm for cuddles and reassurance then up for the day at 5.30pm. At first I thought oh no, then I snapped at myself this is just Owen, this is his normal. (Hence why I look so tired all the time) so this was nothing to worry about at all. Owen really enjoyed his time and I was glad.

I feel silly feeling so guilty and anxious about Owen going to Nascot. I know I would not let him go if I wasn’t 100% sure that he would be safe, ¬†looked after in a way I expect and cared for. The fact that it was such a success fills me with sadness, Nascot Lawn really can not close. We got a glimmer of hope, on how our family life can improve, how our marriage will survive, how we all will cope, recharge and rest and in return Owen had a truly¬†fantastic¬†fun sleepover with his friends.

I’m not sure what will happen if Nascot Lawn does close. We are uncertain if we will be offered anything else. At the moment due to Owens age and medical needs there is no alternative. Even if there was, I very much doubt it would be a match for the truly amazing Nascot Lawn with all their kind and caring staff. Before this we have to undergo an assessment to see what they say are our needs are? This frightens me, every aspect of our life with Owen will be closely scrutinised, I know I can not hide behind my normal mask of ‘I am ok’ .. ‘I do not need help’ Sometimes I wrongly believe asking for help is a sign of weakness. The whole idea of being assessed by strangers who we have never met before makes me feel so stressed. I wish mine and other families didn’t have to go through this added stress and the uncertainty that it brings. Most of all I wish HVCCG would see sense and work out a way to keep Nascot Lawn Childrens Respite service Open.

This is why we need to #SaveNascot

Please help us by signing and sharing the petition below.

https://www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=share_petitionFB_IMG_1500569152216

Save Nascot Lawn Children’s Respite Services

Above is a previuos post about Nascot Lawn which explains exactly why Nascot Lawn is so important.

Thank you for reading.

 

 

 

#SEND30DayChallenge – Day 7 – 5 things I’d change about the way you see my son

20170621_1704441. The first one is easy – PITY!!! My son does not want your pity. He does not feel he is less than any of us, so pitying him is far from helpful, in fact it is damn right insulting. the awkward exchange when someone sees your sons disabilities and stops there, not looking beyond, not looking to see your boy. This is mainly followed by the participate cocking their head to the side and muttering “Oh bless” at times this is followed by “At least he is happy” which they say pretending this is to bring comfort to myself, But you know well and good this is more a mask for their own confused feelings to cover their own awkwardness and feelings of pure pity.

20170630_1435462. You just don’t see him. At times I wonder if my son has borrowed Harry Potters invisibility cloak. Many people talk over him to me, Talk to his sisters but ignore him completely, Basically talk to everyone but him. This is just as bad even when yoare talking about him, or saying complementary things about him.  Guess what he likes to hear them himself. He is just such a sociable boy and just loves attention. It is ironic that many people ignore him and talk to his sometimes painfully shy twin sister, who also would rather you talk to her brother. He calls out for attention, Nothing is more hurtful than watching him get frustrated when he realises he is being ignored.

20170521_1625363.  He doesn’t want to be treated like a baby! He may be developmentally wise younger than his years and his disabilities restrict him in ways that obviously frustrate him. But he is in no way a baby. He can’t walk, talk, move or express him self like his peers, but he tries. We and all his ‘team’ truly believe his understanding is much greater than he can show us. How frustrating must that be for him, How frustrating must it be people him just do not realised he is willing and able to understand and end up treating you like baby? It may take a little more work to understand him, and come into his way of thinking, but I promise you once you enter his world it is magical, you will not want to leave. On a similar note he doesn’t want to cradled or held like a baby either, being cradled is very frustrating for him. Owen likes to be, as much a physically possible, in the middle of the action. This is where you can hugely help to support him. Any way cradling him at this size, with his tendencies to go into extension and throw his body back in frustration, is pure painful for the holder.

20170707_1106514. Quite similar to the above point – Just because he is non verbal does not mean he has not got a lot to say.  He in fact has more than a lot to say.  He may not have the words but he has facial expressions, body language and some sounds to get his point across. If you take the time to learn these you will be rewarded tenfold. Also he is trying all different sorts of communication using all sorts of technology. At the moment he is working on communication switches.

5. Lastly I do not have to justify my son’s existence. We didn’t choose for him to be born so early, to be so sick to result in him having damage to the brian. I have been trolled about this very subject. I have been told my son is a drain on society, and has no quality of life and much, much worse. I have often been in tears when hearing the baby Charlie fight for life, obviously mainly because i feel for Baby Charlie and his family, but silently because I heard many people discussing the case describing someone who can not talk or walk are just existing am not living. This is beyond hurtful. I can promise you now, My son lives life to his fullest, he exceeds all that is expected of him, He gives 100% each day. He is the happiest child i know ( though like us all has his moments) You can not say that about many people.1478949460774

 

 

#SEND30DayChallenge – Day 6 – A Letter to the PM

 

Dear Prime Minister,

I am writing to you regarding my complete despair from the frontline of the cruel continued cuts you keep enforcing. I fully appreciate you will tell me all ¬†“Cuts do need to be made” and “Cuts are happening across the board” ¬†But these endless cuts seem to viciously attacking the most vulnerable in society and their families.

I am a mother of four and also an Unpaid Carer to my beautiful four-year old son who has a severe disability and complex medical needs. I am an unpaid and under valued member of society. Your persistent execution of cuts to the many services we need reflects this. Myself, My family and many other families in similar circumstances are being forced towards crisis point.

73% of Carers said they feel that their contribution is not understood or valued by the Government

Unpaid Carers save our “Government” over ¬£56 billion a year, we earn way less than the minimum wage, being only entitled to just ¬£62.70 per week Carer‚Äôs Allowance for a minimum of 35 hours work ‚Äď the equivalent of ¬£1.79 per hour. ¬†If us Carers only had to ‘work’ 35 hours a week?

A spokesman for the Department of Health said: ‚ÄúWe are committed to improving social care, which is why we will consult later this year and put it on a stable footing for the future.‚ÄĚ

But the above can not be further from the truth. Consultation later in the year will be too late….

On Friday 16th June, Myself and many other families across Hertfordshire received the devastating news that the Herts Valleys Clinical Commissioning Group would be stopping their ¬£600,000 a year payment to support Nascot Lawn Children’s Respite Service. This is because YOU and Your Government are forcing them to make funding cuts. Nascot Lawn will therefore close on 31st October 2017.¬†Herts Valley CCG did not consult with parents, staff, children, the children’s medical team, or anyone involved in the care of these complex children. They have said it is the responsibility of Hertfordshire County Council to fund Nascot Lawn.¬†Hertfordshire County Council are refusing to fund Nascot Lawn (even though the have millions of pounds in the bank for ‘unforeseen circumstances’)

So what is Nascot Lawn and why is it so important to save?                                             Nascot Lawn Childrens Respite Services provide regular overnight respite and care for children and young adults with severe learning and physical disabilities with additional complex medical needs. A day care service for children under 5 is also provided.

Nascot Lawn allows Parents and Carers to take a much-needed break, Confident in the knowledge that their child is receiving the highest standard of care by familiar staff. The staff are made up of an experienced team of qualified Learning Disability and Sick Children Nurses and trained Health Care Support Workers. The staff strive to meet all children’s and young adults emotional and physical care needs along provided them with activities that they enjoy. ¬†Many of the Parents and Carers see the staff as an extension of their families. Nascot Lawn is described as ‚ÄėHome from Home‚Äô. It deeply saddens us that the well-loved Staff face losing their jobs also.

Hertfordshire County Council want to re assess the needs of the 77 children that currently have Nascot Lawn named in their care packages, before the end of July.
Even though they have all already been assessed in order to receive their allocated days/nights at Nascot Lawn. Hertfordshire County Council will send members of their 0-25 SEND team to assess us – people who have no medical training, and probably very little medical knowledge. Hertfordshire County Council will not be able to offer us overnight/weekend/holiday respite as the 3 other children’s respite centres in Hertfordshire are NOT equipped to take children with a medical need. Therefore the most needy, vulnerable, medically complex children will go without. Our families – who are already struggling and teetering on the edge of not being able to cope will not be receiving the vital help the need in order to carry on.¬†Herts Valley CCG and Hertfordshire County Council are having a bitter dispute. And our children – the most vulnerable and needy in our community are caught in the middle.

Looking after a loved one can be enormously rewarding, But it can also be both utterly physically and mentally exhausting.  Without vital breaks provided by Nascot Lawn Respite Services, Carers can often reach breaking point where they can no longer continue and their own physical and mental health deteriorates as a result.

On the NHS Nascot Lawn website itself they quote

‚Äú This care enables families to continue to look after children with very complex needs in their own home‚ÄĚResearch by Carers UK which surveyed seven thousand Carers nationwide found

What is more vital than that?

Research by Carers UK which surveyed seven thousand Carers nationwide found the following

  • One in four unpaid Carers has not had a day off in five years.

  • 40 per cent of unpaid Carers have not had a break in over a year.

  • 69% of Carers said they find it difficult to get a good night‚Äôs sleep.

  • Many Carers are being pushed into mental and physical ill-health themselves as a result.

  • 46% of carers reported suffering¬†from depression because of their caring role.

  • ¬†1.4 million people provide over 50 hours of unpaid care per week.

  • Some¬†6.5 million people in the UK provide unpaid care by looking after an ill, older or disabled family member, friend or partner

Heléna Herklots, chief executive of Carers UK, urged the Government to improve support for carers, warning:

“Without access to breaks, carers can quickly reach breaking point….. Carers are struggling to get a break because appropriate support for their loved ones isn‚Äôt available or services they rely on are being cut or charged for.‚ÄĚ

So us devastated Parents and Carers are fighting to save Nascot Lawn. We are all well aware there is no other facility else like it in Hertfordshire so this is our only choice. ¬†We amongst many other plans of action have launched a petition to save the centre. This has been widely supported and has been signed by over nearly 14,000 people ‚Äď This will be¬†presented at a Hertfordshire County Council meeting on July 18th.

Find our petition below

https://www.change.org/p/kathryn-mason-chief-executive-officer-nhs-herts-valleys-ccg-chair-nicolas-small-save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

Watford Borough Council is now officially opposed to the controversial closure of NHS Nascot Lawn following a Council meeting on the 11th July 2017 and was pleased that the motion was supported unanimously

Watford Constituency Liberal Democrats Website says

Our local CCG is facing up to £45 million worth of budget cuts, however, before the election the Conservatives pledged an additional £8 billion in real terms over the course of the next parliament for the NHS.

Yet just a week after the election result was confirmed, over 60 families received letters telling them that a health care service that they truly depend on, delivered by the NHS in Hertfordshire, would close on the 31st October, leaving them with little or no alternative provision.

http://www.watfordlibdems.org/support_savenascotlawn

At the same meeting Labour Councillor Asif Khan called upon the MP for Watford and fellow 11 Hertfordshire MPs to ask the Department of Health, The Chancellor and you yourself to find the money to save Nascot.

http://www.watfordlabour.org.uk/save-nascot-lawn.html

We are hoping the MPs step up and make you see these cruel cuts need to stop. If not then maybe I may make you see how deeply these cuts are hurting families like mine.

Our¬†children need Nascot Lawn to stay open. Despite what Hertfordshire County Council are saying, they have not been in touch to reassure If they listened to us parents they would understand why. Please try putting yourself in our shoes, providing specialist medical care around the clock with no break – you wouldn’t expect your nurses to do this so how can you expect us to.

It is time these cruel cuts came to an end and you supported the vulnerable and those who give everything to support those they love and care for in an increasingly difficult climate. Carers matter. But more importantly our children matter.

Below is a link to our Facebook page where it is plan to see the volume and devastating outcome of many families who need this service. Underneath that I have added my favourite quotes from the page

https://www.facebook.com/savenhsnascotlawnchildrensrespiteservices/#

Our Children cannot communicate or express how they feel, ¬†Our Children who have no understanding of this awful situation. Us Parents who are already tired and on their knees because they care for their children 24 hours a day 7 days a week. Parents who battle daily for the children’s needs. Parents who don’t even have time for their other children and partners.

We are an army and we have been underestimated.

Special needs parents know how to fight! And they fight until the bitter end for their children. This isn’t just a job for us, this is our lives and our children’s lives we are fighting for. We can’t go home and forget, it’s not an option.

Shame on you Herts CCG, Shame ON you Herts County Council

 

And Shame on you and your Government.

 

Yours Respectfully

Sheri

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Day.5 #SEND30DayChallenge – Favourite Photo

If you know me well enough to have visited my house and seen the many framed pictures I have neatly display all around our home, or know me less so, but follow me on social media, you will know just how much I love photographs.  I love both taking photos and looking back at them.

So a little like yesterdays challenge of choosing my ‘Proudest Moment’ I was once again stuck, this time on choosing my favourite photograph. A little like yesterday I chose a recent one.

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wp-1499536734866.Firstly it is a very cute, heart melting photograph.

Owen was enjoying some assisted standing time, when Florence came over and with a little encouragement this cute little episode happened.

Heart warming enough,  the main photo also got to me on another level. After I had posted it on instagram with some added filters I revisited it a day later.

“A photograph doesn’t just record the event… ¬†these brief frozen segments of time can also evoke and convey so many emotions, feelings and memories…”

Letting my emotions run away with me, I looked at the photo with new eyes. Is this how things should have been? Both twins standing hand in hand, moments that shouldn’t be a rarity but just common place without the need of assistance. ¬†A constant worry ¬†and cause of upset is that Owen’s disabilities get in the way of their twin bond, get in the way of how things should be. ¬†In that moment again looking at this photograph, I felt overwhelmingly that this photograph completely summed this up. On a closer look I then notices that between the Owen and Florence was Owens Special Needs Chair. It was like a symbol of his disability always there spoiling a perfect picture.

But NO I will not let my own deep worries bring down this beautiful picture. I will not let Owens disabilities spoil my perfect picture of life. Owen isn’t his disabilities he has them, therefore this picture can no way be spoiled.

It is pure and simple a picture of my Twins sharing a beautiful moment, sharing their unique but not lessen bond. So therefore at this moment in time this is my favourite perfect photograph.

 

 

 

 

 

 

 

 

 

Day.4 #SEND30DayChallenge – Proudest Moment

So today’s #SEND30DayChallenge is to share your proudest moment.

Having four wonderful children I am finding this challenge particularly hard, how do I pick just one moment? Choosing one proud moment over another is like choosing a favourite child. I am immensely proud of all my children and all their moments that make be smile with pride, so with that thought I have a real long think back to when I last was beaming with pride at all four of them. I didn’t have to look to far back as I think this picture says it all…..

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This is a photo take on the summer solstice which was the hottest day of the year so far. It was after school and because it was so hot I had set up the sprinkler and Owen’s new giant pat mat as a surprise for them when they came home from school. They all spent the rest of the day until bedtime in the garden having simple summer wet fun TOGETHER, ¬†NO arguments, NO one was left out, just pure sibling FUN.

So I am sorry if this was a little bit of a cheat on my behalf, but I don’t think you can look at the picture above and not understand why this makes me so proud.

 

 

 

Owen’s and Florence’s Favourite Book – We’re Going On A Bear Hunt

Day. 3 of the #SEND30DayChallenge – Child’s Favourite Book

It just had to be “We’re Going On A Bear Hunt”

It has been their favourite since they were small, It’s the first book they both really had some sort of engagement with.20170706_163911

At their Early Years Specialized Development Centre (EYSDC) formerly known as opportunity Class, ¬†Christine would read this with props for each page, foam for snow, a fan for wind etc and Owen was in charge of pressing the related switch buttons with pre recorded sound effects relating to each page. It’s no wonder it became a favourite.

20170706_163808_001We have a well stocked home when it comes to books. this is a small selection in the living room that I rotate from the many book shelves upstairs.

 

Recently Florence chose a book from the shelf to read at bedtime all about potty training. She purely did this because she knew it would have the words POO and WEE in it. Both Owen and Florence squealed with delight every time POO, WEE or TOILET was mentioned. Owen currently finds anything that makes rude sounds hilarious ie the ketchup bottle.

 

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I read somebody elses day 3 ¬†blog challenge and their kid also shared a love of toilet related children’s stories and gave a few suggestions of their favourites. I think they may appear on the Twins 5th Birthday List.

10 Things You Don’t Know About Our Stay in SCBU

Day 2.         #SEND30DayChallenge

At first I didn’t know what subject to write about in the day 2 challenge of 10 things You don’t know about ______? Cerebral Palsy? Being A Special Needs Mum? But as it in the month of July there is only one subject that seems to pop up in my mine.. SCBU

The 27th July is the twins 5th birthday and every year during the run up to it, I always get a sense of nostalgic dread and panic as thoughts always seem to wander back there. Not to be confused with dread of their actual birthday but with the events that led us through those doors, into the world of machines and funny little plastic boxes. To all those dark days  that followed and the journey that led us down the path we are on today. The world of The Special Care Baby Unit. 

So here are my 10 things you don’t know about our stay in SCBU

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For a while Florence and Owen were next to each other… The Staff nick-named this ‘Skelton Corner’

¬†1. ¬†We lived each moment, minute to minute, hour to hour, shift change to shift change ¬† ¬† rather than by days. Once I asked a doctor who just came back on shift after looking after the twins the day before how he thought Owen was doing after a particularly bad ¬†24 hours¬†¬†“He is still here, I wasn’t sure what I would come back to, but he is a fighter” We never looked to far ahead as the doctors made no promises, all we had was HOPE.

 

2.   The overwhelming disappointment that nobody wanted to celebrate the birth of our beautiful twins because they were too worried about the outcome. We wanted cards and presents, we wanted to celebrate that they had made it this far, they were here.  I know at the time their life was in the balance. But what if the worse did happen, we would have nothing to show they were here, no record, no memories. It would be like they never existed. A few people did give us gifts and they were strongly appreciated. We still have them in their memory box, together with their first hats, first cpap pieces, dummies and blankets that were actually the size handkerchiefs.

 

3.

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First cuddle with Owen 4 weeks after he was born

We did what we needed to do to survive, often against advice from well meaningful staff, family members and even the advice leaflets you get. Every body has a different way of coping and I respect that, this is just how we ‘managed’ even with many people telling us to go home, to rest, we couldn’t, we wouldn’t. We were (very) lucky to only live 15 minutes walk away (5 minute run if need be) so only went home if we really needed to. We made sure we were there for every doctors rounds. We did as much ‘Cares’ and had as much ‘Skin to Skin’ time as were allowed.

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First cuddle with Florence 5 days after she was born

It was tough especially having two other children, but we knew they would understand that this is where we needed to be at that present time, Each time we were away from the unit, our hearts and heads were still left behind. ¬†I also wrote a diary of sorts. I wish I wrote more in it, some weeks are just a scribbled timeline of events. I still have it tucked away, I can not read it without crying. I don’t tend to read the timelines around this time of year, as some dates are just too hard to be reminded of.

 

4. ¬†I don’t think many people realised how poorly I became straight after having the Twins. I was just being wheeled round to recovery after¬†my emergency c-section, the Twins had just been wheeled out to SCBU. All of the suddenly I couldn’t breath, The next thing i remember is waking up with an oxygen mask on my face, in a high dependency unit. The days after I had to undertake heart scans, CAT scans, blood test after blood test, a few days later I was well enough to return to the postnatal ward, torture when you are sat there alone surrounded by crying babies (Yes the jealously of just being able to hold your own babies hit me hard) I escaped from my bed as much as I could, mainly against nurses orders to be upstairs with my babies. It was a mystery why I had been so poorly and no one was no longer monitoring me so I discharged myself. Relief spread that I could spend as much time as I wanted upstairs in SCBU. But going home from hospital the first time without my babies was overwhelmingly hard. I would love to say it got better, but that walk down the corridor home never got any easier.

5.¬† ¬† Each time¬†we had ‘Good News’ for example Florence coming off CPAP

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Florence’s first cuddle off CPAP

onto an Oxygen tube, we celebrated by going to the hospital cafe and buying a Boost bar and a Latte. This must have somehow always been at the same time of day as on the tv the game show Pointless was always on, Silent but with subtitles. ¬†We could measure how ‘well’ the day was going from how far we went from the unit. Dark Day = We took turns to go to the parent room at the top of the corridor. Bad day = If we really needed a break from all the sounds and the overwhelming stress of it all, we would go for a walk around the car park and find a bench, Good day = Going to the cafe (see above) on a rare relaxed day = We may venture home, or to the local park which was nearby, but this always made us anxious after a while and we would rush back.

6. ¬† The ‘Breast’ Pumping room can be either the most social of rooms, all mums together sharing a unique and raw experience, But it also can be the most lonely and isolating. I remember turning my chair around to face the window just so the other mums didnt¬†see me cry, as they talked about how they were soon getting discharged, As I knew I had months of that room ahead of me and no end date in sight. ¬†The angst when a mum is complaining they are producing too much milk, that they have no room in either the hospital freezer or the home freezer, while you milk supply is diminishing at a rate that the feeding nurse sends you off to the doctors for an emergency prescription of domperidone to try to get the supply up again, all while the doctors have meetings about what is the plan of action if your breast milk runs out. I felt like such a failure when it finally did just stop. ¬†Jointly setting your alarm at home to wake up every 2-3 hours just so you can breast pump is equally as depressing.

7. ¬† Sometimes the most traumatic of experiences that you see in SCBU are not limited to your own babies. My ‘next door incubator neighbour’ panicking as her baby struggled to breath during a feed and me running into the corridor screaming for help is still haunting. When we were transferred to another Hospital for Owens Hernia Operation and being stuck post op in a large room with around 10 other very sick babies, when all of a sudden a rush of doctors came in and had to perform emergency procedure on another baby, while I took over feeding Owen because the nurse asked me to stay so she could help with the emergency was truly harrowingly. I have never felt more invasive.

8. ¬†Cares – which basically means careful washing, nappy changing, temperature checks, mouth cares etc. Doing cares were exactly like you were tawp-1499330766367.king part in a game of the ‘Crystal Maze’ you put your hands in a plastic box, through two small holes carefully passing things from left to right. At times half expecting someone to shout ¬†“Just grab the crystal, grab the crystal!!” ¬†While constantly looking at the monitors waiting to set them off and panicking if you do that you are hurting your own baby. Pulling the tab of a nappy too loudly could startle your tiny one, setting all the alarms off again. Owen had a real trouble with cares at the beginning he associated touch with pain and procedures. eventually he grew in confidence that we were not going to hurt him and we grew in confidence that we could care for our fragile little twins.wp-1499330827941.

9. We will never under-estimate just how hard all the staff work. All the Doctors, Nurses and Health Assistants each all played such a massive part in not ‘only’ a part keeping my precious babies alive and giving them the best possible start. The Staff also kept us sane. Respecting that we needed to know every detail no matter how bad the news. Sensing when we wanted to be left alone in our thoughts or passimg the time with¬†light-hearted chats as we spent many hours staring at a plastic box waiting the next time we could do something useful. We always wonder how they work so hard, and care so much and then manage to go home and turn off. they

10.

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Florence the day she was born

Something I think people wrongly believe  that the day you come home, your neonatal experience ends. This is no way the truth. How can it be? You go through something so traumatic how can you move on from that? How can it not affect you? How can you not change as a person? Being in such a constant state of worry for so long can simply not just melt away, especially if your babies have continuing health issues. The memories of the

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Owen the day he was born

beep of the machines, the staring through the glass desperately trying to see past all the wires to see your baby bird like child can simply not vanish, but simply be buried the deep mixed emotions that you felt, such as guilt, sadness or anger can often resurface when you least expect it. I really hope if anyone else feels the same they receive support and at least do not feel alone in this.

 

Much Love.

 

Meaning Behind Blog Name – #SEND30DayChallenge

Today is day 1 of the Mum On A Missions SPECIAL NEEDS BLOGGERS 30 DAY CHALLENGE

PLease feel free to join in using the hash tag #SEND30DayChallenge

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https://www.mumoam.co.uk/single-post/Special-Needs-Bloggers-30-Day-Challenge

So DAY 1.  Meaning behind blog name

The blog started out as a closed group on Facebook, then a blog on Blogspot, both just documented the progress of my premature twins Florence and Owen. I then started a page which expanded to more information, awareness and campaigning as well as documenting progress. More recently I started this new blog on WordPress.

So why the name Flourishing Warriors?

Simply really my Twins are called Florence and Owen.

Florence = Flourishing

Owen = Warrior

I believe my ex prem 28 weekers are both a pair of fighters, they are warriors and they continue to flourish each and every day.

This blog is all about flourishing and fighting.

 

Look out for tomorrows challenge is a lot more tricky