Life sucks! Literally!

So, we got Rory home on Thursday 17th of November. Feeling optimistic, we set the timer again for life at home, began learning how to care for Rory, find a new routine for his tape changes, stoma care etc and prepare for Daddy returning to work. He has had such a long time off and he hates the thought of letting his team down, more importantly all of the lucky children who get to spend their school day with him. He is eager to return but with very little sleep, the stress and anxiety that us little monkeys cause, there is no way he could leave us yet, not least because we have no idea how mummy would manage when Rory needs 1:1 care 24 hours a day, it really is tough going. Mummy and daddy never relax. Rory has been very very poorly and we are lucky to have him home at all, but the fear that any minute he could be right back in hospital is overpowering and even gives daddy nightmares. He once woke us up to check we hadn’t got tracheostomys because in his dream we all had one. 

Everyone says that mummy and daddy are so strong and so positive…but we heard them say they couldn’t do it anymore the other day, and they  were very sad. It’s the first time we have seen mummy and daddy be anything other than smiley, because normally they don’t let us see them. Daddy said he didn’t know what to do anymore and they talked about how alone they felt in this little bubble, caring for us around the clock, staying up through the night for Rory even though we have amazing family and friends around us. The fact is, like mummy and daddy say, nobody actually has a clue what we are going through, not even Nannie & Grandad H who we see every day. They don’t see mummy and daddy sat on the nursery floor holding Rory upright whilst he is choking on his own secretions, daily, the distress he is in because of it. The tears rolling down mummy and daddy’s face as they try to be brave. They don’t see mummy physically shaking when she has to do emergency cares because she has lost confidence since Rory has been so poorly, they don’t see the fear in Daddy’s face as mummy and daddy decide whether to ring the ambulance, again! It literally is every single day….a battle. 

As mummy and daddy never know how long they have us home for, they always try and make the most of it. Mummy told us all about Christmas and she bought us some tinsel to play with, it is very shiny. 

Daddy sorted out the wood in the garage, Big T fetched us lots of wood to keep us warm in winter, mummy told us  he is a joiner, that means he makes things out of wood. 

We had our first fire of the year. Mummy and daddy were nervous as to how it would effect our breathing, little things like perfume or plug-ins really make a difference. 

On Saturday we had a rugby party with Daddy & Grandad. Daddy had lived in the hospital for over a week so mummy said he deserved a treat and even ordered a dominoes…

On Monday the 21st November Great Grandma Jean turned 80 and she had a party. As this was such a special occasion we braved it and with precautions in place we went for an hour.  It was our first trip in public since Rory got his Trachy super power and as it was such a special occasion we wore a fancy gro. We couldn’t help but feel though that we were the circus act as even though the pub was full of family, friends, neighbours….we were stared at. The noises Rory made, the tubes, the machine, the plastic around his neck. We felt a pressure as people watched and asked questions. Will people ever see Rory for Rory? He’s still the same beautiful boy. 🤔

It was only when mummy’s cousin who is a Dr asked if mummy and daddy felt more anxious now, with the Trachy than we did before that mummy stopped and thought….the answer was no. Before Rorys windpipe could collapse at any minute, game over…..yet now, even though he will always be vulnerable with his breathing tube, that piece of plastic gives him a safe airway, it keeps him alive, the cares are a whole new world but how can we be more anxious now he is safe? 

Everyone commented on how well we looked…

Yet that night mummy had to call an ambulance and Rory was blue lighted to Sheffield children’s hospital….again! This is the problem we have….people don’t realise how poorly, vulnerable, compromised we are because we look well, however mummy doesn’t share pictures of Rory on life support, looking poorly because let’s face it….who wants to see that? 

anyway….mum and dad woke up to Rory coughing no struggling for breath, almost two hours had passed and Rory was still having a coughing fit. The ambulance came and the paramedic commented that ‘other twin doesn’t look too well’ and mummy contemplated taking us both….yet instead daddy spent the night sat up in A&E and mummy spent the night sat up at home. It was a long night. 
The hospital was full and so daddy spent the night on a plastic chair in the assessment unit. The Drs explained to daddy that they didn’t know what else they could do for him and that it is likely in the next few days Rory would require oxygen, and perhaps even the ventilator again as he will go back down the same road as before. So daddy decided that even though it would be a tough ride for mummy and daddy caring for him Round the clock, he was safer at home and less likely to catch other infections whilst sat waiting to get worse in the hospital. 
So from that point on mummy and daddy tried a number of methods to attempt the 24 hour care. Initially mummy was setting her alarm every hour through the night to check on Rory and daddy every half past the hour. He was being checked on every 20-30 minutes but it wasn’t enough. They were finding him with excessive secretions, gasping for breath. 

The small plastic tube acts as rorys airway, but also his mouth and his nose and so spit, snot etc makes its way out of his body through that tube. If you imagine trying to breathe through a blocked nose (with no mouth option) this is what it is like when he needs suctioning. The 20 minute wait was too long so mummy and daddy decided to try sitting up with him downstairs. 
10 – 2.30 daddy downstairs with Rory, mummy sleeping upstairs with one night feed for me. 
2.30 – 7.00 mummy downstairs with Rory, daddy upstairs with one feed for me. 
They were surviving on 3-4 hours sleep per night. It was tough, but they knew Rory was ok. That’s all that mattered. We will not dwell on the meltdown days when mummy and daddy considered carers, respite care….cries for help. 

In other news mummy did an ages and stages  assessment on us. We were on track or exeeding in all areas except gross motor skills which is not surprising when we have spent most of our life in a hospital bed. So mummy bought new toys…

Mummy and daddy continued to find it really hard and so whilst it takes a lot for daddy (Who usually holds it together) to snap, once he did, mummy grew a pair and took control of the situation. She looked logically at the hugely complex and difficult situation, broke it into chunks and addressed each problem to find a manageable short term solution, with long term solutions to be considered once the situation was less emotional and the stress had gone. Taking Austin and his night feeds out of the situation for a night meant that we would get 4 hours unbroken sleep each and start tomorrow with a new head. Everyone feels better after a good nights sleep and for mummy and daddy a solid four hours was the best it was going to get…..for now anyway. 
So Austin spent his first night at Nannie & grandad H’s house. Mummy found it most difficult because she felt guilty, like she was shirking her responsibilities. She knew that in different circumstances, nobody would have looked after us yet, not even for an hour here or there, but here I was having my first sleepover. 
Mummy and daddy said that with only Rory to look after it was much less stressful and half the workload. They got better sleep too….but they missed me, I on the other hand loved it at nannies. 
They reckon I said hello to grandad….what do you think…
Everyone is really smitten with my chatter chatter but it Is really sad that Rory won’t be able talk. Sometimes I chatter chatter away at him and he just looks at me, at first I wondered why he didn’t chat back, but I learned that he does but we just can’t hear it. His little mouth moves and he chunters away. Silently. 
We had lots of playtime, making the most of every day….we even managed a walk, although it is debatable how much fresh air we got….

Over the course of the week Rory got worse and worse. Mum and dad just didn’t know what to do anymore. When Rory was discharged last time some of his Trachy tube secretions were taken to be tested and so mummy rang the hospital. Surely if there was something bad going on, they would know from the tests. Well…’s a good job mummy rang. He had moraxella, e-coli and RSV and bronch still. They prescribed some strong antibiotics for the moraxella but RSV etc has to go on its own, the body has to fight it. We’ve been here before, a few weeks ago and ended up on the ventilator in intensive care. There was nothing to do but pray he could fight it this time and prepare for another hospital stint and no rest for mummy and daddy who were still struggling through the days and nights. They said to bring him through to the hospital to be tested again and to get his medicine but rather than bring him in they said to leave him in the car and for mummy and daddy to do the test and bring it back. 

We began the new antibiotics, Rory got better a little bit each day. 

Daddy even managed to sort the garden for winter. Mummy said it would do him Good. Doesn’t it look bare?

We had more play time…..

We even played I’m a celebrity. Mummy makes our food and so we went to the fruit and veg shop and had a morning tasting different food. It was great until mummy fed us green beans. 

One bath time Rory enjoyed his bath like old times, apart from not being able to splash proper to avoid getting his Trachy wet. He smiled. Mummy found it a pleasure doing all of his cares, he smiled through them. This was a massive sign he was getting better. Mummy sobbed. She was so proud of him. She told daddy that a smile from Rory these. Days was enough to keep her going through another rubbish day,daddy agreed. He said that Rory still looks at us the same as he did from the incubator. Seeking reassurance. Low self esteem. Quite sad really. 

So with things starting to get Slightly better day by day. We began the Christmas countdown. Nannie Newbs made us advent calendars with a £1 in each day and Nannie H bought us an advent calendar to use every year last year before we were born so mummy put sensory things in it this year. Our first day was shredded tinsel. 

Forgot to mention our grown up high chairs.

BANG!! Just when we started to believe  and daddy planned to go back to work, mummy found blood in Rorys nappy. He had a urinary tract infection. He started more medicine. This time it made him poorly. 3 long days with lots of vomit and a really lethargic, floppy Rory, and a mummy and daddy anxious for another hospital stay. He started to pick back up, slightly. I got walks with daddy to get fresh air….

Nannie brought us some Christmas friends to cheer us up, she squeezed them in her tiny car….

 So Sunday the 4th arrived (a lot of up and downs between 17th Nov and 4th Dec hey!!!) and it was our community light switch on that nannie, grandad and usually mummy help to organise. It had been a really bad day in our house. Mummy and daddy had both been really sad and believed that they couldn’t carry on. It isn’t worth going into all of the things that made them sad, the dark thoughts they had or the amount of tears they shed….because they weighed up the risks and decided to take us out. They turned the negative into a positive because we had our pic with Santa. Mummy didn’t think we would get to meet Santa this year because it would mean queuing up with germs. Win win all round. 

Bish bash bosh! Just as things were looking up mummy found blood in rorys wee again and Rory was refusing feeds. Mummy took him to the Drs (with urine sample… much fun trying to catch a baby boys wee in a plastic tub) and the wee tested that his body had gone into Starvation mode. Just like mummys when she had to go to hospital when pregnant for iv fluids all the time. The dr rang a couple of times to check on him and he did seem to be improving slightly. Mummy could tell that the pressure was on to keep Rory out of hospital so it was agreed with the dr that if mummy hadn’t managed to up his fluids and test negative for ketones by morning, he would go to hospital. Mummy sat up all night with a syringe, syringing water into Rory. The following morning at the Drs he tested negative! Mummy felt very proud. Rory couldn’t go back to hospital because he wouldn’t be out for weeks again as he would just catch everything, it is too big a risk. 

So….without dwelling on how poorly Rory actually was, the exiting part is he started to get better….

All of this happened…

And then just to confirm that Rory is back on form, the best we have known him post Trachy…..the proof is in the pudding….

We can’t fill him.

So we decided that as things were looking up, we would decorate the house and start to look forward to our first Christmas. 

As Rory was feeling better and better each day his cares were becoming more manageable so mummy and daddy tried sleeping together in their own bed with just the monitors and breathing alarms. They did it. Life was beginning to return to normal…..well as normal as it is going to be….for now at least. 

Mummy has even booked our baptism and first birthday parties. 

Daddy went back to work today. Something which caused great anxiety and distress for both mummy and daddy. Daddy’s last day at work was in September when Rorys windpipe collapsed whilst home alone with us both and mummy drove Him to A&E where he ended up in resus and blue-lighted to Sheffield, on the ventilator and with a tracheostomy to allow him an airway that was safe. This was a big deal. In our house we live every day as our last because we never know when the timer stops and we end up back at the hospital. So daddy found it difficult the thought of leaving us to go to work. The past few weeks has been labour intensive too. With neither mummy or daddy knowing how mummy would cope on her own. The three weeks where she had us both home on her own were a breeze, she aced them….but a lot has changed since then. Gosh….that’s an eye opener….we are 8 months old and there has only been 3 weeks normality. So…. Mummy is going to write the J.A.M (just a mum) files… keep daddy in the loop on all he is missing whilst he is at work. 
Mummy finds literature comforting. She loves to write….poetry, blogs…..she loves to read too. Everyone is always asking mummy and daddy questions that are sometimes difficult to answer and no matter how hard they try, mummy says that nobody ‘gets it’ how could they? So…..Here are things she found interesting that she would like to share.


Food for thought. 👶🏻👶🏻

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