So when we set off on our first family holiday road trip…..we never expected our destination to be the critical care unit at Sheffield Childrens Hospital with Rory sedated and on the ventilator, having had emergency surgery for a collapsed windpipe. How did that happen you might ask?!
So…..after a couple of dreamy weeks at home, living normally (well as normal as you can do with two poorly babies, low neutrophils, Extremely susceptible to germs and with a diary choca-block with appointments) we decided to venture to Nannie & Grandad Hardys holiday pad for a little well-deserved family holiday.
We packed up the car…..the list was immense and included 12,000 ml of milk, (5 boxes) 60 sachets of Gaviscon and 75 nappies…for two nights. Our Neonatal Outreach Sister had advised to take red books, contact details and postcode of local hospitals (mum was already on it). There was barely enough room for me and Rory.
So mummy and daddy fed us and we set off. Mummy and daddy were fully aware that they had limited time to get there before we would need changing / feeding again. As excited as mummy was….she was partly expecting a roadside feed or a lay-by nappy change. (Oh the glamour) and so they cracked on counting down the miles.
The whole way there me and Rory slept and mummy and daddy spoke about how lucky they felt and how much they are enjoying being a family at last. They planned out the next couple of days, talking about the places we could go and how they wanted our feet to touch the sea and the sand. Mummy really likes us to use our senses and we really liked touching grass and feeling rain on our face last week.
The journey went super fast and we arrived just as we were stirring for a feed so mummy and daddy hurried in with us and all of our luggage. They walked in to a lovely surprise for us. Nannie had bought us some books and some bubbles, buckets and spades for the beach and put up bunting and wind toys that could entertain us.
Mummy had shiny eyes, she is so grateful to have such loving and thoughtful grandparents for us. She knows Nannie and Grandad were so excited for us to go to their weekend wheels. They had gone to so much effort making it right for us.
So…mummy and daddy fed us, unpacked all of our things and then prepared for an afternoon trip to the seaside….Bridlington.
At Bridlington mummy and daddy walked us around the harbour. They even did us a sneaky bum change on the pier whilst people were boarding the pirate ship. Mummy said it was less germy than the changing facilities and she said she triple dared anyone to question her parenting choices.
We walked along the seafront and daddy saw some other twins. They had sun hats with their names on…..we are way too cool for that! Everyone was stopping and looking at us and talking about us as they passed.
Mummy and Daddy took us to a fish and chip resteraunt. It was one of few with a door wide enough (mummy says shops with narrow doorways are ‘twinnist’) although mummy and daddy had eaten there before we were born and knew they did nice pie…mummy’s favourite.
Once we got back to lake Dacre, we were sleepy. Mummy and daddy got us bathed, fed and ready for bed. Daddy watched the olympics with a few beers and mummy caught up on some sleep.
The next morning, Rory was sleeping and I just wanted to explore, so daddy took me for a walk around the lake.
When Daddy and I got back, daddy told mummy he had a confession to make. Mummy looked worried. Daddy explained that an old lady by the lake came over and touched me…daddy said he didn’t know how to stop it happening. Mummy was in stitches. 😂
So daddy fed us both….practicing some twin hacks…
In Filey we strolled through the park, along the sea front and lapped up all of the attention we got. We saw mummy’s friend Sarah and endured lots of ignorant comments like ‘oh gosh….I’m glad I didn’t have twins’ ‘ shame it’s two boys,…you will be trying for a girl next’ mummy smiled and walked…..she really wanted to offer them a seat and share our journey…..people really can be so shallow can’t they. Had they walked a mile in mummy’s shoes they would certainly see the world differently.
Mummy and daddy did us a nappy change and fed us on a viewing point above the beach. They were respectful to other people, shielding us with our buggy so nobody could see. we made a seagul friend who watched us the entire time from a perch next to mummy’s head. Mummy was petrified she hates birds. Mummy and daddy cleared up, feeding and changing us, settling us off. They high fived each other as they set off up into the town centre.
In Filey there is a raised path that takes you from the beach to the shops. Mummy and daddy were pushing us up it in our bugaboo. They got 3/4 of the way to the top with a queue of people behind them when they met a buggy coming the other way. The rude lady made us out to be inconvenient, because we are a ‘double buggy’ and so we had to turn around and push past all of the people behind us, back to the bottom of the hill, to go right back up to the top again. Lots of people made pitiful comments about how inconvenient twins and double buggy a must be. Mummy said several times that she makes no apologies and that we are a blessing. Mummy just pitied people’s narrow minds. The people in Filey that day were ‘twinnist’ but mummy and daddy carried on. Proud as punch.
When we got back, mummy and daddy bathed us and fed us and mummy and daddy realised that rorys breathing had deteriorated and he was struggling for breath. They rang the local walk in service who wouldn’t see him and advised we rang 111. Mummy rang 111 and the lady could hear Rory gasping for air, so she sent for an ambulance straight away. To make it easier mummy and daddy drove to the roadside. I didn’t realise how poorly my brother was, well none of us did, so I told mummy I was hungry and so daddy fed me on the steering wheel whilst mummy supported Rorys breathing until the ambulance got there. It didn’t take long before the flashing lights sped in. Mummy carried Rory into the ambulance and daddy waited in the car with me, feeding me and waiting to find out the plan. It took mummy ages to go through all of the history for Rory…..but it didn’t take long for the paramedic to decide to take Rory to Hull hospital. They told me and daddy and off the ambulance went.
Mummy had to lay on the stretcher and hold Rory all the way there. It was a long journey and the ambulance was going very fast. Mummy’s tummy muscles were shaking from holding balance. They hooked Rory up to monitors and gave him some oxygen and a mask with special medicine that kept rorys airways clear. It made mummy feel very sick and dizzy. mummy and daddy were very scared. I was ok because daddy made sure I didn’t know anything was wrong, daddy looked after me and we both waited at the caravan.
When they got to Hull, they went to the children’s A&E, mummy had to go through All of the long medical history of Rory again and again with lots of different Doctors that came. They didn’t know what was wrong but they did lots of tests, hooked him up to oxygen, had a chest x-Ray and looked into the possibility of all sorts.
Safe to say…with Rory not able to breathe….they didn’t sleep much. In fact…at all.
In the morning when it got light, mummy looked out of the window and realised that the view they had wasn’t that bad…
It’s just shame that they were miles away from home, miles away from daddy an me….mummy was scared. She was all alone, worrying about Rory, but as always didn’t ask for help and instead put on a brave face, smiled through it and cuddled Rory, singing away the silly made up songs to the same tune that daddy is sick of hearing, cos that’s what mums do right?!?!
So the specialist Dr came round and told mummy that they wanted to send Rory to an ENT specialist clinic for children, the closest been Sheffield (conveinient) and so the challenge to secure a bed and transport begun. It could have been hours or days or even weeks. Meanwhile daddy and I visited. It should be noted that daddy did an amazing job of looking after me and sorting out all of our things at the caravan. As well as packing everything we all needed for a day and driving all the way to the hospital with me in tow.
No sooner had daddy and I arrived that news came that there was a bed on the surgical ward (surgical…everyone panicked) and that the ambulance would be there within the hour. Mummy knew it must be serious.
Daddy went back to Dacre park to pack up and drive home to Barnsley whilst mummy and Rory made the journey to Sheffield Childrens surgical ward. We were very lucky for it all to fall into place. The paramedic Who took us in their ambulance to Sheffield was the only paramedic on road in Hull at that time and so we were obviously a medical priority but grateful all the same. Mummy had to hold a very agitated Rory, just like before, but this time all the way to Sheffield. The paramedic even blew up a rubber glove to entertain Rory…it didn’t work.
When mummy and rory arrived at Sheffield they were wheeled through the hospital. Mummy joked that it looked like she had just given birth to him. They had their own room so Rory settled in waiting to see the specialist.
It wasn’t long before he came. Mummy held Rory really still whilst the dr passed a camera down his throat. The Dr. really surprised with how brave mummy was. Normally a nurse holds the baby because mummy’s find it hard – mummy said that it was a walk in the park to our journey so far and it has made us all tough. Secretly inside it killed her, she was petrified. But still she sang and smiled. It could be worse.
The specialist Dr found that Rorys windpipe had collapsed. The following hours are a blur. Daddy came and shaped over with mummy so that she could go home and rest. The Drs decided that Rory would have some medicine and they would monitor him for the next two days.
Rory got worse.
He went to theatre within a couple of hours. Rory and daddy watched happy feet whilst they were waiting to go down. Daddy said that Rory was really happy and excited for his journey to theatre. It made daddy sad because he clearly had no idea where he was going. Daddy had to walk down with him to theatre, watch him go through the door and walk away. Daddy told Rory he loved him and that he would be OK. Now daddy really is our superhero because that is brave shizzle. Big balls kind of stuff. Mummy is so proud of him. So here is Rory on his way to theatre.
Meanwhile at home, mummy was struggling more than ever. Having not slept in over 24 hours, a very unsettled night with me and a lot on her plate….mummy just wanted to walk out of he door, across the fields and keep going. She didn’t. She did something very strong for mummy….she asked for help. So Aunty Vicky went to work late to look after me (she took this picture)
Back at the hospital daddy felt like he was waiting a lifetime. Daddy didn’t know where to go because rorys destination depended on the outcome of the operation. He had a bed reserved on the critical care unit but he might not have needed it. So daddy stood around in corridors, waiting the phone call. He was all on his own. He has big balls.
They finally called him. He was up on the critical care unit. The first procedure failed but they managed a second attempt. They wouldn’t know the success or outcome for a good few days yet but Rory is in a controlled sleep with sedation and on the ventilator machine. Huge blow. Wasn’t expecting that.
The consultant explained that the windpipe as much narrower than first thought and that the outcome was unthinkable had they not operated when they did. They had put him in a controlled sleep and on the ventilator until they could secure him a safe airway.
So mummy raced through to be with daddy and Rory leaving me with Grandad hardy. Mummy found it hard leaving me, but she had no choice. She packed a bag so that she could swap with daddy, except when she got there and realised he was completely sedated, they decided to go home because Rory won’t know any different. There is a dedicated nurse stationed at theend of his Cotbed and the dr is one of the Drs who looked after him when he was born, who mummy likes very much.
The sad thing is too, as mummy explained to the Dr, out of 4 months that we have been born, we have only had 3 weeks at home. Being in hospial is more normal to us – all of us. mummy and daddy have already slipped back comfortably into old routine.
mummy had a sad moment with Aunty Chlo. By the time Rory pulls through this, I will be going in for my operation and then by the time we are both home….daddy will be back at work and that’s family time over with for a while. Also…we are not allowed out and about, to groups, swimming, visitors, shopping etc during October to february and so by the time we are able to experience anything, we will nearly be one. But then again as long as we are ok….does it really matter? Mummy just had a weak moment where she thought about all of the normal things we are missing out on. She pulled herself together.
So with mummy and daddy together at home and just me to look after, it was easy. They took night feeds in turns and got chunks of 6 hours sleep. At breakfast the next morning daddy said he doesn’t know how parents of one child have cheek to moan, it’s a piece of cake, he reckons he could do one by himself. 😂
With me in tow, we all set off to the critical care unit, to visit Rory. He had just had a heart scan which showed he had an enlarged heart, a sign of heart failure. He also had fluid on his lungs and a swollen liver. Didn’t sound good. He looked very puffy and very still and like a pot doll in colour.
Mummy and daddy took me to the park across the road. For lunch and fresh air.
Today, Rory was cold. We put him a hat on and the nurses wrapped his feet in a foil blanket. He is cold to touch and creamy colour. He had an echo scan which showed he didn’t have heart failure but he was showing signs of an upper collapse in his lung. His oxygen requirement is increasing.
The plan is to look at waking Him up gradually from Monday and taking him off the ventilator. Only then will we know if the operation has been a success….if the airway doesnt collapse once the pipe is removed. keep your fingers crossed.
there are other options, but lets hope we take the easy route for once.