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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My wishbone

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I saw this quote and it got me thinking. Do I have any of those ‘bones’?

Starting to blog and post on Facebook was HUGE for me. It took a lot of courage. After all I’m spilling my guts for all the world to see. Warts and all. Im putting us out there to be judged.

And its scary because deep down I’m a sensitive soul.

I care what people think. Too much. I like reassurance. That I’m making good decisions, the right decisions or that I’m just plain doing good. I worry I might say the wrong thing or the right thing the wrong way.

But I love to write. It helps me process things. And its nice to have people share our journey. Less lonely.

So I cracked on.

And I created my blog first. Then Dixie’s page followed. I sent out the invites to like her page and within minutes people were responding. It was really heartwarming as there was nothing on her page to see at that point.

I’d be lying if I hadn’t already made a mental list of those I assumed would follow us, follow her. Only thats not what happened at all. Those I thought of as our biggest supporters, have not shown a shred of interest. No cheerleading. No good job. No acknowledgment. Nada.

That bothers me.

It actually bothers me in so many ways, but mostly I just don’t understand why. It will be added up alongside the other life lesson I’ve learned along the way. Never assume!!

I understand we aren’t everyone’s cup of tea. Maybe they want to remain in their little bubble. Perhaps they don’t want our reality staring them in the face. Or maybe we’re not that interesting 😉

Whatever the reason. My skin will get thicker. And I will not take it personally. Because it probably isn’t. Mostly.

Then there is the positive side of all this. You guys. For every person who hasn’t cared, Dixie’s page had 10 more of you that do. Some total strangers, or friends of friends. And ok her page is still small but thats ok, because its doing its job. Its purpose.

Because ultimately, I started the blog, the page. The warts and all. For two reasons.

Reason one. To simply raise awareness. This world we entered over a year ago. This world of genetics and extra chromosomes, missing chromosomes, partials, deletions, mosaicism. It was nothing I had ever heard of before.

It was an eye opener. I felt lost, alone, unprepared. I didn’t know where to start. I was scared to join the groups at first. Fear of facing our reality.

Which leads me to reason two. To reach other parents going through the same thing. To show them Dixie without them having to make themselves known. To help those families feel less alone. To leave it in their corner to make contact if they needed to.

And I’m so happy to say that I’m already doing all I hoped. Even with my ‘small’ page, I am reaching families and my Dixie doo is helping them. She’s pretty amazeballs after all 😉

So going back to the quote above. THIS is my wishbone. I mean not entirely. But for right now, my wish is to carry on blogging and carry on helping.

My backbone needs a bit of work. But its growing stronger by the day.

Funnybone? I guess you would have to ask my friends!!

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