A wobble day!

 

I was having an ’emotional’ wobble day today.

You know the kind. When you worry you’re not doing something right. That you must be failing because nothing is coming together.

I was singing the same old nursery rhymes, doing the same actions. Asking Dixie the same old questions. Are you clapping Dixie? Where’s your nose? Can you poke out your tongue? Look at mummy banging on the tray. Can you? 

Nothing but blank stares or a soft smile. No copying with the claps or the banging of the tray. And that is her usual response. On my wobble days I find it hard!

Nevertheless I pushed it down deep and carried on.

We moved onto some floor time. Some sitting. Only today that resulted in Dixie forcing herself backwards. Again.

I tried several more times. With her favourite toys, me sitting behind her, her sitting against the sofa. Every time she forced herself backward. Something  I thought we’d got past.

Onto tummy time. I was already prepared for the frustration and tears as we’ve had it for the past year. Only this time she was immediately pushing herself onto her side to roll back. Tummy time failure. We repeated but it happened again. We gave up.

A few minutes rest and we attempted some supported standing. Only her knees didn’t  want to straighten. She bounced happily up and down but refused to bear any weight at all. 

Nevertheless I pushed it down deep and carried on.

I decided to have a change of scenery and moved her into the kitchen in her super duper chair. I gave her some dissolvable corn snacks to practise hand to mouth and chewing. 

She moved to pick up the snack and recoiled. She pulled her hand back and rapidly blinked her eyes. I know those signs. She wasn’t happy with the sensation of touching the snack. I didn’t get it. She’s done great with these before. I tried again. Same thing happened. She wouldn’t even pick it up. 

I wanted to push it down deep and carry on but instead out slipped a tear. 

It suddenly all felt pointless. I didn’t see any progress in that moment. I just saw regression. 

On my wobble days, I feel that we’re being left far far behind. I can see the progress of other children but things go so slowly in our little world. 

I want to be the one to tell the world about a huge milestone, or even a small stepping stone. It makes me wonder sometimes whether it’s me. Am I doing something wrong.

She conquers. She regresses back. That’s our cycle.

On my wobble days I feel cheated. Cheated that I’ve already seen her sit unassisted only now she won’t. I’ve felt her bear weight. And once. Just once. She poked her tongue between her teeth very slightly when I poked out mine.

Those moments were amazing. They made all the stress, the struggle, the time and the disappointments absolutely worth it.

And then days like today happen and all those happy thoughts and aspirations for the future crumble. 

These are the hard days of being a mummy of a special unique little lady. The ones that I’m sure someone else could do a better job.

I’m supposed to be a warrior mum. A dragon mamma; the one building her up. Making her feel she can do it. Who else will do that for her?

On my wobble days, I’m the mummy who feels like giving up. Who looks at the big picture and feels so overwhelmed. Who wonders again why this happened to our family. To our little girl. 

The day couldn’t be rescued so we sat and cuddled for as long as she would allow, and I let tears flow. I gave her a silent promise that I wasn’t giving up and tomorrow was a new day. That I was sorry if I wasn’t doing things the right way.

And I would do better.

I moved her to her napping cushion beside me and found something to occupy my mind till she fell asleep.

Then something took me by total surprise. Movement caught my eye. Dixie. Sitting up. By herself. Having pulled herself up off her napping cushion. And now she was grabbing at the toggle thread hanging from the hood of my jumper. She was trying to put it in her mouth. 

Maybe the day could be rescued after all. 

Such a small thing to most but to me. Well it just turned my day around. And that fire in my belly came back. 

I felt renewed. And after she napped, we tried all over again! 

 

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Before VS After

 

Omg this.

THIS quote!

I can not put it any better than that. And I imagine a lot of people can relate it to a moment in their lives.

Dixie was my moment. My life altering moment. And she has changed everything about the life I lived before her. The way I see things. What’s important.

There is almost certainly some kind of divide in your life when you move along into motherhood. 

Things initially turn upside down as you adjust to life as a three. 

Gone are the days of last minute plans or drinks out when the mood takes you. Your priorities change. In its place is a life that involves lost sleep, a dwindling income, less socialising. 

Your child is suddenly number one and you often feel like you lose some of yourself as your needs are put on the back burner. 

But it’s worth every lost minute. 

I think when you have a child with complex needs, that divide becomes almost a gulf. It is such a significant change your life becomes unrecognisable to how it was.

There is definitely a sense of a before me and an after me. In pretty much every aspect.

The before me took the T9M information booklet given to me on diagnosis day, and decided to pick out the most positive pieces and decide Dixie would be all of those things.

The after me realised Dixie would write her own information booklet. She would set her own goals.

The before me used Facebook purely for entertainment. To post pictures, keep in touch with friends afar and most importantly stalk!! 

I never came across the pages following children with rare disabilities, common disabilities, health conditions, cancer! I never thought to go looking. It never crossed my mind that Facebook could also be a huge support network for some. A lifeline even.

The after me MADE a Facebook page. How ironic. I tentatively joined a couple of Facebook groups and found my first taste of that support. 

I found the charity UNIQUE (who incidentally had put the info together about T9M which I had received on diagnosis day!) They put me in touch with other families and introduced me to a few support groups on Facebook. Yes. A lifeline.

The before me had a handful of friends. Those from work, some since becoming a mummy and some stragglers from my school days. 

The after me met and connected with a variety of parents. All walking similar paths. Some here physically, some virtually. All who keep me sane (ish). They are a mix of people that had I not had Dixie we would have never crossed paths. I’m so thankful for them.

The before me I like to think was a little bit silly. A little bit daft. Talking a mile a minute!! 

The after me is still that same silly girl. I just don’t have a lot of opportunity to let her out anymore. I spend so much of my time having to be serious. Make big decisions. 

The before me was relatively carefree. I had worries of course. But nothing hugely significant and things most parents can relate too.

The after me still has all those same worries. Plus a huge dollop of ‘this is too much worry’on top. With a cherry. And a flake.

The before me took a lot for granted. That milestones would be a given, that friendships would withstand tough times. That my life would be ‘normal’.

The after me realised that there is no such thing as normal. That friendships often dwindle, that milestones aren’t met. That life can be far from average.

The before me had it pretty easy. I didn’t appreciate at the time how easy. I had child free nights and time to be me again. Not mummy. Not carer. 

The after me hasn’t had a child free night in a year. There isn’t one even on the horizon. I can’t remember how it feels to be free of worry. Free of anxiety.

The before me was a little bit selfish. A little bit naive to the suffering  that some families faced. The battles. The fights. Every day.

The after me lives those fights too.  And I will continue to fight. And continue to grow in strength to get the very best support. And the very best care for my girl.

The before me was looking forward to the future. To see how Maisy would grow and who she would become.

The after me is scared of the future and what it will bring. But also excited to see both my girls reach their full potential.

My pre-Dixie life was a breeze in comparison to now. Im not saying that my worries were insignificant. Just that mostly the things that ate my brain passed as Maisy got older and I got wiser.

My post-Dixie life is a whirlwind. My emotions are up and down like a yoyo. And I worry all the time. I don’t see a time that will EVER stop! I didn’t think hospital appointments and therapies were a lifestyle. Turns out it’s ours. 

I can’t ever go back to the person I was before Dixie. My eyes have been opened so wide because of her, and ultimately I’m grateful for that. Because I would have missed out on so much beauty. So much strength. 

Dixie in a nutshell!

Let’s begin 2016 with a catch up.

Grab a cuppa, or a coffee; hell grab a wine. Go grab a seat and make it comfy while I bring you up to date with all things Dixie doo!

First up, the biggy. Her heart.

It was established at her initial echo at 2 days old, that Dixie has two heart abnormalities. A VSD or a hole for us non-medical folk. And pulmonary stenosis AKA a tightened/thinned heart valve.

Now as bad as these might sound, the two problems helped each other. They corrected enough that for the first year her heart looked lovely & balanced.

If the cardiologist could have predicted the likely path that Dixie’s heart would have followed, it would have been to see the hole close and at some point a possible keyhole surgery to open up the valve.

BUT. As this is Dixie, that wasn’t what was seen at a follow up echo last summer. In fact the hole had remained and the valve had opened up quite a bit by itself. Sounds good in theory but not so much in reality. And a consequence of this is my girls heart is now enlarged on the left hand side. Balanced no more 😦

Outlook this year is to check back in about four months. There is a chance she may need open heart surgery to repair the hole but I’m hoping it will close at some point itself. Or that she continues to stay well as it is.

Second. Her swallow.

Bit of a rollercoaster this was. One of my many fears was the feeding tube. I’m not even sure why but it was a big worry. And as soon as her feeding troubles were taken seriously, I had a mummy feeling that she would end up with a tube.

I couldn’t have predicted how it would come to be though! That an emergency hernia repair operation would lead to a ‘temporary’ mic-key button being placed to secure the stomach.

The surgeon wanting to remove said mic-key button three months later but Dr community asking for it to remain till her second video swallow.

And ultimately her failing the video swallow on fluid. And when I say fail I mean she wasnt safe to swallow liquid. Unfortunately both thin & thickened showed some silent aspiration and so it was deemed safer to stop all fluid via mouth. After all the button was already in place. And I didn’t want to risk fluid on her lungs.

So was it fate? Stick a gastrostomy button in Dixie, give me six months to get used to looking after it before training me to use it?? I often wonder….!!

Anyway no matter the whys and the whats. She now has a fancy little button that I use for all her fluids, meds & a calorie boost.

It’s not scary. And (hopefully) isn’t forever!

Third. Her eyes.

They were initially a few problems there. Mostly it was delayed visual maturation, meaning she wasn’t seeing what she should for her age.

Other things came up along the way. Her pupils being very small, a squint, her left eye being smaller, nystagmus. To be honest we seemed to be told a new problem every visit. And so we just glided along in limbo eye land.

Our last appointment however, was pretty damn good. And it seems the little lady is just far sighted. Again we remain under review so never say never.

Fourth. Miscellaneous health.

I thought I would band her minor ailments together. She is also being treated for reflux, constipation and eczema. And the meds help muchly.

Fifth. Development.

I don’t want to sit here and list Dixie’s can’ts and her can do’s. I have to do that enough already with the professionals. I will say that her development is patchy, and that when she’s in the ‘mood’ to cooperate that it’s clear that she can do more than you think.

She’s clever. She’s stubborn. And yes she is taking her time with the stuff that this mama bear is waiting very impatiently for her to achieve. But that’s something I need to get over.

So that’s a Dixie summary wrapped up nicely in a nutshell. Hope you made it to the end 😉

Bye bye 2015!!

I would like to round off my year in 2015 a little differently.

Not with a summary of the rollercoaster ride we found ourselves on, that’s certainly not for the faint-hearted.

Not with pointless & meaningless New Years resolutions that come February will be long forgotten. (Seriously does anyone stick to them all year – or even remember them?!!)

Not with a projection on 2016 or what I want from it going forward (that’s for another blog I’m sure 😉)

No I want to round up 2015 with a bunch of thank you’s to those who have helped us through such a challenging year.

The biggest thank you must go to our families. Without your endless support, this year would have been so much harder. Without your generosity we wouldn’t have been able to provide Dixie with extra physio. Without your help we couldn’t have got through our hospital stay nor appointments. Maisy wouldn’t have always got to school or been picked up. Dixie wouldn’t be the best fed kid in town. You have no idea how much we appreciate all that you do to maintain normalcy for Maisy.

We love you all  💗

Thank you friends. I’ve made some pretty good ones this year and I want you to know how much you’ve helped me in my journey. Thank you for caring about us. For listening. For making me feel that I’m not alone. Thank you for letting me rant, for the advice and help on feeding tubes. For being there. Always.

Thank you to those who didn’t shut us out despite it being an easier option. Whether you’re in my real life or a Facebook friend, you have all played a part in my surviving this year. And ending it feeling pretty positive.

I love you 💗

Thank you to the amazing charities that help & support families like us.

To the charity Unique for working tirelessly on raising awareness of rare chromosome disorders and providing accurate information on many of these disorders for us parents. Thank you for helping us connect to other families and giving us an outlet.

To Mencap Leeds for providing Hawthorn family support. A place much needed for so many families. Thank you for being there and bringing some of the nicest people into my life.

Thank you to Dr community. For always being positive. Never focussing on Dixie’s weaknesses. For making me hope that Dixie will have a bright future and not putting a death sentence on her or worst case scenarios.

Thank you to our play therapist. As the only consistant therapist in our lives this year, you have given me self belief. In those times I’ve blamed myself for Dixie’s slow progress, you have made me see how far she’s come. And that somehow I’ve played a part in that. Thank you for your enthusiasm and for believing in us. And for being there.

Thank you to our community nurse. For building my confidence in handling Dixie’s new medical equipment. Thank you for listening and supporting us.

We love you 💗

Thank you to those who follow Dixie’s progress. Who are interested in her. Who read my blog because you care enough to want to understand how I feel. The blog that started out as a way to let people know how Dixie was doing so I didn’t need to feed it back individually. But to me has become so much more.

Lastly thank you to my wonderful girls and Daddy L. Dixie for just being you, for fighting hard. For giving me hope. Maisy for being my little diva and keeping me on my toes. And for loving Dixie as your little sister. Daddy L for stepping up more than I ever imagined. For being strong when I’m feeling weak.

I love you all 💗

Happy New Year 🎉🎊

It’s beginning to look a lot like Christmas :)

Last night I began the long and tiresome task of wrapping the girls ‘santa’ presents. 

Only this year it doesn’t feel tiresome. This year it actually feels pretty wonderful. 

We have done the usual of starting to buy in early November, then buying more again early December. Then a panic buy mid December in case we hadn’t got enough.

We had enough. We had plenty. In fact, we have plenty X5!!!! 

And I was struck by how ‘normal’ it all seemed. To be getting excited about pulling out Dixie’s toys that I’d forgotten we’d bought, and thinking how much I couldn’t wait for her to open them. To see if we’d found anything amongst the pile that she would enjoy and examine.

It mostly struck me because this time last year those feelings were missing. There was no real excitement. I hadn’t worked out what she needed. I hadn’t put much thought into what to buy if I’m honest. 

After all did it matter? I had just been told devastating news back then that had meant she was no where near her real age.

In fact, I remember when we were asked what Dixie would like I just dismissed people. I told them not to bother. Mostly because I didn’t know what to tell them to buy. I didn’t know what she liked or didn’t. There was no preference at all. She was 6 months old going on 3 months.

I was still angry then, although I didn’t realise it at the time. I was so busy grieving for the child I had expected that walking the aisles of the toy shops was yet another reminder that my child was different.

And I had been full of self pity. Full to the brim. Woe is me, why us etc etc…

This year. I’m a different me. The self pity has all but gone, and I hope it stays that way.

Now I realise I was expecting far too much from her. Yes she was delayed but even if she hadn’t been, what six month old would have understood Christmas? 

This Christmas however, oh my. I could list a million things she would love. A packet of wipes, some paper to rip, a sleeve or a slipper. Maybe an empty yoghurt pot or a balloon..!! 🙂 🙂

Seriously though, her play therapist gave me pointers on what her next development stage would benefit from and we went overkill. And it was such a pleasure looking for those things. 

I feel like I have some things to make up for this year. I know she won’t remember, but I do. I want her to know I’m sorry more than anything.

This year will be a million times better. Santa will be coming to our house in serious style. And not just on the gift side of things, I feel content. I feel lucky and blessed. I feel thankful we are all healthy and we are all together. Who could want for more?!

And I can’t wait to see her sitting in her chair, belly laughing at the sound of ripping paper. Helping rip that paper too. Working out her new toys. Smiling as Maisy bounces off the walls in excitement. 

And as its Christmas and it’s the rules to have a chocolate breakfast, I will be melting some for her to have too. 

I can’t wait to make more memories to cherish! 

So from us to you….Merry Christmas and thank you for being a part of our journey 💗💗

  

Life in the slow lane!

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Following Dixie’s hospital discharge in early March, we collected a couple of professionals to add to our ever growing list.

Her surgeon. Although we wouldn’t have regular appointments, we were due to see her as an out patient three months later. The plan was also to remove the temporary gastrostomy that had been placed during surgery as an anchor to her stomach.

We also picked up a lovely community nurse. Her role was to support us in the home with the up keep of the gastrostomy button,  to keep an eye on her incision site and monitor her weight and general well being. Another temporary support, but one I welcomed. I’m squeamish. And a bit pathetic  with all things woundy, bleedy and gooey.

The gastrostomy site needed quite a bit of looking after in the beginning. And as an added surgery extra that I hadn’t expected, I found it difficult to touch and clean. But I had to. And it did get easier. The community nurse was great to have at the end of the phone when I was being a neurotic mummy.

Within a few weeks, Dixie had really begun to pick up in herself. Although she still felt very limp and weak, and most of the strength she had been building up over the previous months was slipping away. She had started to roll again. Unfortunately this in itself caused issue following surgery. Her wound opened from the constant rubbing on her gastrostomy button, and became sore and bled. In the end I had to place a cushion at her side to prevent her rolling.

You can only  imagine how hard this was for me. Here she was, going at it guns blazing and yet I couldn’t let her. She needed that time to recoup. To recover and to heal. But no matter what I told myself, it was a huuuuge step backwards. Huge! I felt powerless.

A couple more weeks passed and I needed to get some power back. She was almost 10 months old by now and her gross motor skills were hugely delayed. This worried me. And made me increasingly anxious.

So I did the only thing I could think. I chased appointments with her developmental team. I chased physio – which at this point we still hadn’t had, despite being told it would begin in January. I chased Mrs OT and Play. And I chased Speech.

I know it sounds mad considering she had just had major abdominal surgery, but I felt helpless. I felt useless. I couldn’t just let the rest of the muscles deteriorate.

I’ve previously mentioned throughout her hospital ordeal, she had picked up a new skill. Holding objects and generally using her hands more proficiently. This was a big step forward, and one I wanted to develop.

My chasing paid off. Mostly. Mrs OT and play came out within a couple of weeks and were mighty impressed with Dixie’s new skill. They left me lots of positive feedback and advice.

Physio was another story. Another blog!!

What’s also important to mention about March is its Trisomy awareness month. With it being the third month, trisomy being a third chromosome.

It was also rather timely that my sister and her friend Laura had offered to run 10K for a newly established charity. The T9M Trust. And even more so that this run fell on the 10th March, one day after trisomy 9 awareness day, and three days after Dixies hospital discharge.

I was thrilled. Being completely unfit myself and with no extra time to get fit, it felt wonderful that they had thought of us. We of course went to town, in the sense of having special T-shirts made up and going along to show our support. The whole family, including the grandparents as papa L was still with us from Scotland.

And they did brilliant, especially as it had only been my sister second 10k run and she was a bit of a newbie runner.

This run had also become a bit of a important part of our story. It was this reason that I had found the courage to make Dixie’s diagnosis public. My sister had come up with the idea of the run the previous December. I had waited as long as possible before ‘outing’ Dixie in mid January.

It was a big step. It was a scary step. But the response to my ‘big’ news was actually pretty disappointing. I’d built myself up to spilling the beans and hardly anyone even acknowledged it. Despite this though, sponsorship came flooding in.

Over £2000 in the end. Including a huge donation and the sponsorship of our T-shirts from Daddy L’s employer.

So it was worth it. It was worth telling the world about Dixies extra chromosome. And it felt like a huge weight was off my shoulders 🙂

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Imagine….

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Imagine falling pregnant without trying. And it being the worst possible timing but the best possible news.

Imagine bonding with that tiny person in your belly. Feeling it move and kick and excitedly planning its arrival. Finding out it’s going to be a she. A baby sister for your first born.

Imagine the day she is born feeling on top of the world. Then the next day being told matter of factly she has a heart murmur. And she has ‘funny’ ears and a ‘funny’ chin and that her chromosomes might not be how they should. You agree to a blood test, with the results being several weeks.

Imagine at two days old your baby is taken to another hospital for a heart echo. You watch her leave without you in a huge incubator and a private nurse. You wait anxiously for several hours till you’re reunited again. The results are repeated back second hand via a different doctor.

Imagine when discharged, leaving hospital with a big fat question mark over your baby’s head.

Imagine at home using your sleepless nights to google syndromes night after night. Trying to find something but hoping for nothing.

Imagine getting that hospital call four weeks later and knowing that the genetic results would be there.

Imagine at that appointment being told her results weren’t normal. And what had been found was so incredibly rare even the pediatrician had to read up on it.

Imagine being told your baby may lead a normal life or that they may not. Coming home from that appointment you feel disconnected from your baby. Numb. Shocked. Sad.

Imagine those precious first months with your newborn. Instead of funny poo tales and cluster feeding nightmares, they pass in a flurry of hospital tests and appointments. You’re counting down the months and wishing them away, in place of answers.

Imagine living in a bubble of confusion. Of learning medical terminology and becoming an expert at mastering an ‘I’m ok’ mask.

Imagine as time goes by instead of answers at appointments your left with more questions. You live your days in a kind of limbo. Over time the professionals involved with your child increase. And so does your diary.

Imagine the worry. It’s there in the pit of your stomach laying dormant till they cough, choke and go blue. Till they vomit up after every meal for weeks. Till they lose weight or don’t gain enough. Till they develop strange behaviours or symptoms. Till there’s talk of future surgeries, tube feeding issues, infection worry. Or till the next review, or appointment, or results. You never fully relax.

Imagine watching your child slow down in progress despite everything you’re doing. Some days you just want to give up because its frustrating to live through day after day.

Imagine the mixture of joy and sadness as you watch your child’s amazing little friends move on and progress. While your child remains the same.

Imagine more and more equipment coming into your home. As it becomes ever clearer you’re child needs more support. More care.

Imagine there’s a night out planned, or the chance for coffee but your mindset is not there. You just can’t shake off your last appointment so you don’t go. You feel yourself withdraw in order to refuel. And leaving your child takes careful planning so isn’t always doable . Or maybe it just slips your mind. You have so many things to remember, to organise, to order. A social life is the first thing forgotten.

Imagine wanting so desperately to talk about it. To be honest about how things are so others might understand. But you can’t. You don’t know where to begin some days. Others it’s just too overwhelming.

Imagine when you go to bed at night on top of the usual worries, your kept awake by questions that can’t be answered. Will she walk? Will she climb? Will she say ‘mummy’? And when those questions don’t plague you, others do. Awful ones that you couldn’t ever repeat.

Imagine trying not to think too far into your child’s future. Most are desperate to keep their children young, but you’re wishing for yours to develop into a big girl.

Imagine you don’t feel like you quite ‘fit’ anywhere.

BUT….

Imagine you were given a gift. The most perfect, wonderful and life-changing gift that you could ever be given.

Imagine how grateful you would be despite all the hurdles and all the worrying times.

Imagine knowing despite each and every struggle, your baby gives so much more back.

Imagine how brave she is. How she keeps fighting on despite so many odds being against her. Just to smile and to laugh.

Imagine that such a small body of a person can give you so much strength. Enough to carry on day after day.

Imagine you realise how lucky you really are.

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Our first scare.

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I still remember everything about the day. It was late February.

I remember it started uneventful. It was a Thursday. The kids and I had been to lunch at my mums and had come home early afternoon for Dixie’s nap.

She slept well. When she woke we had a cuddle, and I put her in her inflatable ring for some tummy time.

That’s where it ends being uneventful. And where I experienced one of my scariest moments to date.

She screamed out. It was a totally different cry to normal. It was pain. I quickly picked her up and her body had tensed like she was trying to poop. I tried to comfort her, rocking her in my arms. Maisy was following me around the house talking nonsense whilst I was moving from room to room wondering why she wouldn’t settle. Getting worried.

I called my sister. She came over and took her from me. By now Dixie had already collapsed and gone floppy on me but was back to moaning. She was pale and starting to bring up mucus and then choking on it. I was in full panic mode.

I called an ambulance. The first responder was here within 4 minutes. Strange what silly things you remember. I just remembered the timer on the phone displayed as I hung up from 999.

She had a high pulse (most likely due to her crying) and was having a slight retraction in her throat so they took us in.

A&E for two hours. SATS normal but Dixie sleepy, pale, uncomfortable. They moved us to an assessment ward after deciding to admit us.

Another hour wait.

The nurse finally called us over for assessment. Took one look at Dixie and hurried us into a side room. She asked if her lips were always blue?? Blue??!! She was becoming unresponsive.

Suddenly there were two doctors and the nurse. They were putting an oxygen mask on her. She was exhausted and lay motionless on the huge hospital bed in just her nappy. She looked so vunerable.

They asked lots of questions, listened to her chest and decided on an X-ray immediately. The doctors were giving us lots of opinions. Aspiration. Infection. Gastroenteritis. Bowel issue.

Then I noticed red spots appearing on her legs. Viral spots. And suddenly things seemed very serious. I just remember daddy L and I swapping looks at each other. Worried.

They wanted to start antibiotics right away. They were treating her as meningitis. They needed to put in an IV immediately. They wanted her nil by mouth, so an NG tube was inserted in her nose with a bag to drain her stomach. They wanted blood samples.

It was on their sixth attempt and third doctor when they successfully got the cannula in her. Sixth. She just lay there, eyes closed. We were finally put into a room 5 hours after arriving. Our own room. Daddy L went home and I stayed. She didn’t have a comfortable night. She would moan and whimper and every hour was still retching.

I stayed by her side in a chair and didn’t sleep. At 2am a doctor came to see us after receiving her chest X-ray results. Her abdomen was very swollen and had moved up into her chest cavity. She was full of gas. They had ruled out a hernia as a chest X-ray from just after birth showed all her organs in the correct place.

The next three days were a blur of different tests, ward hopping and sleepless nights. Three days of worry, of confusion, of more doctors with possible diagnosis, of surgeon involvement. Of her being prodded and poked and passed from professional to professional. Three long days and nights of missing our home, Maisy, Daddy L. And no answers.

All we knew was her stomach had caused her left lung to collapse, but they didn’t know why. Her cannula had only lasted 12 hours before coming out and a further 5 more attempts (including trying her skull) failed. Her veins would just collapse. It took a surgeon to finally secure one in her.

Finally a barium swallow was performed and a blockage was seen in her stomach. Within a couple of hours she was being wheeled down to emergency surgery and I was kissing her goodbye in the little room beside the theatre. We didn’t at this point know much about what they may find. It was just guesswork. The surgeon had asked us to just trust her. At this point we had no choice.

Several hours later, we got the call she was in recovery. She looked so calm. So peaceful. No tubes on her face anymore. It was sweet relief. The surgery had gone well, and the biggest surprise was it had been a diaphragmatic hernia all along despite them ruling it out in the beginning.

They had successfully repaired the diaphragm and her abdomen was anchored down with a gastrostomy which would come out three months later (or not as the case actually was!)

We spent 24 hours on the HDU, then the following evening we were moved to the surgical ward. Things here for me felt more settled. I was waiting for Dixie to wake up more and take her feeds. Build up strength and come off her epidural, fluids, monitors then we would be on the home straight. I wasn’t waiting for the next test, the next possible diagnosis. I wasn’t on tenterhooks. My baby had been fixed, now I needed to be patient. For her to get better.

I spent a lot of time by myself from then. Whole chunks of time. Hour after hour watching Dixie sleep, too afraid to leave her side in case she woke up and I wasn’t there. All my family were stretched. Daddy L was working, then seeing Maisy, then coming to hospital at night. My mum was with Maisy (and I didn’t want her here at the hospital) My sister was working. They both called in when they could. I also had a couple of visits from other parents who had children in the same hospital.

Even still, it was one of the loneliest times of my life. I would have done anything for a friendly face, a meaningless chat or just a hot coffee and a hug.

It made me realise what a lonely life it can be for parents with poorly children. Or those that spend long stretches in hospital. I met some absolutely amazing little people on that children’s ward. And inspirational parents and families. Those that had to leave everything behind to spend weeks in the hospital. Months even. It becomes almost a second home to some. The nurses and staff become a part of their little family. It wasn’t a depressing atmosphere, it was full of life.

It was really humbling.

Dixies bedmate for a couple of nights was an amazing little lady. Despite enduring far too much in her short life, she was the star of the show. Literally, she lit the ward up. Everybody (including me!) wanted to be around her. And her mummy was equally awesome. You would have never imagined her stay had been as long. Always smiling and upbeat. Always happy to chat. It was a pleasure meeting you A & A x x

Four days post operation and we were discharged. Papa L came all the way down from Scotland to help us out and a couple of weeks later we were getting back into the swing of things.

We were in March now and Dixie was 9 months old. And development wise, we were going backwards following the operation. Apart from one area. Her hands! She was grabbing, holding and passing objects!! All that laying around had come in handy for something!

Clever little lady 🙂

I miss my co-pilot!

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I miss my Maisy.

My partner in crime. My little mate. My helper. My co-pilot.

I know how odd this statement sounds considering she is still very much here. But I do.

It’s becoming increasingly obvious that I’m struggling to adjust to my biggest girl starting full time school. And can I just say, I NEVER (in capitals) imagined feeling this way. Never mind admitting it out loud. To the world.

But I do.

It became ever clearer to me why I am perhaps struggling to adjust, when one rainy afternoon I found myself knee deep in her out grown clothes. Crying big fat, ugly tears. I sat that day in the middle of our bedroom floor with a feeling of what can only be described as total devastation (Ok, ok. Im bordering on drama queen).

In simple terms. I felt a huge sadness. And here’s some reasons why…

Every top, pair of jeans or dress had a memory attached. Every coat or jumper I laid eyes on, I saw Maisy at 1 or 18 months or 2. Memories of when it was just us three. Memories of a life full of ignorance, when sometimes days with one child felt overwhelming but would nowadays be a walk in the park.

Those times which looking back I didn’t appreciate enough.

The child just never slept. We were so exhausted we could barely see straight. I was in a constant state of fog. She would wake up so much through the night, her carpet became a makeshift bed. It was cold and uncomfortable. And I was miserable. And exhausted.

And daddy L. He was there with me. Getting small bouts of sleep before heading out at the crack of dawn to work a long day! (he may or may not have paid me to say that!) 🙂

Maisy has always been outdoorsy so I would drag us out to the park or soft play. To meet our friends, or for long walks. When all I really wanted to do was pull a blanket over my head and sleep for a 100 years.

I’m glad I didn’t. Because now she’s a big girl and school has stolen her five days a week. And I miss those weekdays we had, with daddy L at work. Just me and her. I miss baby Maisy, toddler Maisy. I even miss THREEnager Maisy!!  But now I appreciate every minute of those memories.

It wasn’t so hard.

It wasn’t all sentiment that caught me off guard. Those memories I have of Maisy. Well she’s walking in those clothes. In fact she’s running. She’s shoving cake into her mouth and dancing. She talking in those clothes, she’s singing.

Don’t get me wrong, I know Dixie isn’t going to be like Maisy. I know they are individuals in their own right. But it hurts to see how far Dixie is falling behind her peers. And as she gets older the gap becomes ever wider. Life is much easier when I don’t compare. And as a rule I don’t. Sometimes the memories come back and It happens without me realising. This was definitely one of those times.

And thats not all. I feel like I’ve lost my little Wednesday to Friday motivator. My friend the chatterbox. The little ball of energy that starts every morning with the sentence ‘what are we doing today?’ before I’ve even pulled off the covers. Whilst daddy L was at work, she got Dixie and I to the park. To meet friends. To go shopping or feed the ducks.

Although I love mummy & Dixie time. It’s wonderful. It can be lonely some days. And sometimes our time when it isn’t dominated by appointments can be quiet. A little too quiet.

But I know that I will adjust. And my biggest girl will grow up into an amazing and compassionate little lady. I know she will. And her teachers think so too.

And I hope she knows how proud I am of her. How well adjusted she is despite all she’s had to go through this past year. I don’t even feel like I can take credit for it. She has made me ever stronger. I know in the hard times with her by my side, Daddy L holding my hand and Dixie doo in my arms, I can do anything.

I miss my family of three but I LOVE & CHERISH my family of four x x

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Goodbye 2014, hello 2015!

Early January and our first Videofluoroscopy was here. Dixie was just 7 months old.

We had managed to get a cancellation appointment which are rare. This took our waiting time down to about 13 weeks. We had been sent a faded, poorly photocopied list of instructions to follow before the test. What things to bring and how the process worked. Daddy L was working, so with the addition of my sister, AKA moral support in his place, we headed down to the X-ray department at the hospital.

I’d had to starve Dixie for a few hours so by the time we were waiting to be called, she was not a happy little lady. I was dreading the test, I had no idea whether the specialists would get all they needed, whether Dixie would ‘perform’. I just wanted to get in there and then out with a clearer picture of what was going on with her swallow.

Can I just say, the girl did GOOD.

They strapped her into a tumble form chair while they got the puree/fluid ready. I jumped around in front of her like an excitable CBeebies presenter. Anything to distract her from her rumbling belly and strange surroundings.

First up puree. At this point Dixie had only been trying small amounts of smooth foods so I wasn’t sure how it would go. Luckily my girl is a greedy guts. As soon as the food appeared, tears subsided and her mouth opened for the spoon.

The audience of professionals watched everything from behind a panel of windows, discussing amongst themselves whilst I tried to decipher whether it was good news or bad.

Puree was cleared. Phew. Big sigh of relief.

Next up double cream. Yes actual double cream. They had replaced her usual milk from her bottle with this cold drink so I had my doubts she would even take it. I offered it and she clamped down her mouth and began to drink. Woohoo! Honestly she rocked it.

They switched over the cream to her usual milk to tire her out, then back to the double cream again to see if anything had got worse the more tired she had become.

All done. We had a cuddle and finished up her usual bottle whilst the speech lady and the radiologist looked over the results.

And those results were…..disappointing. Although the double cream hadn’t penetrated her airways onto her lungs, it had flickered in and out quickly. Unusually as she tired out, her swallow improved. She was uncoordinated and she also showed some milk going up into the back of her nose. This was expected though as she often vomited right out of her nose! Ick!

Speech ended our appointment saying they would like a repeat test in 6 months (which I found out later was quite unusual as there mostly annually) She had small concerns, but felt as long as we continued thickening her milk to double cream consistency then things would be ok. She also expected that as she got bigger and her muscle tone improved, so would her swallow.

So at least we had some answers.

The following month we started OT at home. Mrs OT came with the play therapist from the community team which was great. They looked at the way she moved her arms/hands. Kicked her legs etc. And chatted about how I could help improve her development from learning through play.

She still wasn’t reaching out her arms for toys above her or at the side. Nor was she grabbing or shaking objects. Mrs OT explained that the muscles at her shoulders and tops of her arms were extremely weak. It would be very difficult for her to just lift her arms up, never mind to grab for something. I won’t lie that it was frustrating that such simple things for you and are were so difficult for her. It was a little sad too.

However, her vision was coming on leaps and bounds and she was starting to look around with interest. Her head control was getting ever better, and she had started to hold her bottle for a few seconds at a time whilst drinking it. She had been rolling over for about 2 months and was getting quicker and more controlled.

It wasn’t all bad. And although she was moving slowly with her progress and her peers were storming ahead, she was improving bit by bit. Her ‘small’ achievements were HUGE to her. To us.

I just had to be patient. Something I’m working on even now. But Ive always believed in her.

I still believe!

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