Monthly Archives: June 2014

End of a Long Week and the Start of a Big Week

Wow this has been a long week… We have had visitors, been on our own as daddy was at work, learnt new ways to care for our daughter and have finally been moved to the ward!!
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We have loved all the visitors that have come to see me and Leya!! It has kept us occupied and we LOVED seeing people from the real world 😃. It was lovely so see family and even those who had yet to meet Leya. She gave cuddles, smiles and showed everyone that she is made of some strong stuff indeed.

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We had a lovely visit from both of Leya’s God Mummies to be (hopefully is all goes well and we get out in time) and I had an awesome time with Hayley and she made me giggle and smile and really cheered me up.

Both me and Dan have now been signed off for suctioning which is one step in the right direction and we both tagged team in tie changes this morning which was fiddly and not the easiest thing in the world but between the two of us we managed it!!

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Leya has come amazingly far this week!! She is now off her humidification during the day and wearing either a Swedish nose or her bid. She had her feeding tube removed and is now feeding much better but due to a little weight loss is on SMA High Energy milk, but the amount she is taking is more and more each day so we cant complain to much oh wait we can when she brings it all back up again!! And we have just been moved into our own cubicle on the ward which means most of her care is down to us again!!! This scares the hell out of me and her dad as we have had nurses on call 24/7 for the last week and a bit!! We feel like she has just been born again and we are brand new parents!!

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We both missed Dan/Daddy all week the phones calls throughout the day to update him just weren’t the same but the minute he got back we both felt at ease again!! Leya was full of smiles for her daddy which made us both feel happy that she missed him and was glad that he was back with us!! He is now defiantly not allowed to leave again we are locking him in with us!!

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She is as smiley as even and making the nurses run around after her which is funny and the nurses on the new ward have already fallen in love with her after 10 minutes.

She is still on her antibiotics as she has an infection somewhere but they are not sure where but its banana flavoured so she scoffs that right down without any problems.

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Then we have this massive week ahead of us!! Our first Trachy change is dawning 😁 the nurses will do it first to show us how it is done then me and Dan will have to crack on and have a go!! To say we are cacking our pants is an understatement I mean we have to change a tube that is inserted in our childs very small neck that is her only way of breathing (ahhhhhhh) This is when we feel that maybe taking one of the lovely nurses that we have grown attached to home 😃.

We are hoping that once we have our discharge meeting this week and when everything is signed off and in place we will be coming home!! It is looking like this will happen at the end of this week or the beginning of next this is also another scary thought, but the support from home has and will be amazing!!

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We would like to say a massive thank you to all that have donated, helped with Leya’s Journey and are doing fundraising in the future, your support and generosity has been overwhelming.

So from all of us here at the hospital we are progressing (a little faster than mummy and daddy are ready for) and focusing on coming home!!

Much Love

Dan, Casey and Leya

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3 months Today!!

Where do we start hay Leya!! Well first off Leya is a whole 3 months old today!!! 🎂

A massive thank you to everyone who have liked, shared, tweeted, retweeted and set up fundraising ideas.
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We also managed to get a re-tweet from non other than Paddy McGuinness which was amazing!!

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So this is just a quick blog to say that my MRI was clear so my condition is down to an immature voice box and fingers crossed I should in time grow out of it. But for now its just a waiting game to see when this will be.

If you could all keep sharing my page, helping my friends fundraise, reading mine and mummy’s blog and getting my story out there I will keep you all updated with regular smiles!!

I also want to give a big shout out to my friend Indie who has facebooked this picture using my #leyasjourney

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Oh yer we have also contacted the Cornish Guardian and the Bude and Stratton so keep an eye out as I may make an appearance.

Facebook page: https://m.facebook.com/Leyasjourney

Fundraising page: https://m.facebook.com/groups/1428626847416602

Hashtag: #leyasjourney

Lots of Love Leya!!

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From the Beginning

Where to start… Last July myself and my newly married husband Dan found out we were pregnant with our first baby!! We were over the moon and couldn’t wait to tell everyone the happy news. We waited till our twelve week scan to make sure all was ok after having a miscarriage the October before but that day came and our emotions were all over the place but wow how could you fall in love so quickly with a black and white fuzz ball??!!
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So my pregnancy was ok apart from the wrongly named morning sickness which I was suffering everyday all day till the day I gave birth!! So now we really started to get excited buying clothes and furniture for her nursery and her pram!! Then our 20 week scan and we were so excited to find out what our little Jellybean was but ohh no those legs were tightly shut!!
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So we had another scan booked in and hoped our jellybean would let us know what sex we were to expect. This was when daddy took to talking to our bump and asking nicely to open our legs to give us a quick peek and SHE did on our 28 week scan!! Our little girl was well behaved and showed off everything (much to daddy’s disgust). Once out of the scan he informed her that she was to shut those legs tight again and not open them for a long time.

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So fast forward to the 26th March 2014 I went for a routine midwife check and this resulted in a quick dash to Exeter where I was diagnosed with pre-eclampsia. Now this is where the trouble begins!! So we were both monitored closely and I was told I would be induced and wouldn’t be leaving with our little Princess Leya. Now a mixed bag of emotions followed “OMG were not ready” “yay she will be here soon” ect…

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So Sunday 30th March was the big day!! The pessary was put in place, the contractions came and then I was checked Monday morning but nope nothing had changed. This is when a doctor with MASSIVE hands came and broke my waters then we were all go!! Im not saying it was easy but it also wasn’t that bad. Both my mum and Dan found me on diamorphine rather hilarious (thats another story) and at 11.13pm on the 31st March our little Leya Kathleen Ellena Raper was born weighing a good 5.13lbs!!

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So we stayed in hospital for 2 days then were sent home. Oh that was scary I wasn’t ready to be on my own without the call button!! But once home we all settled in to family life. We noticed that Leya would have these episodes while feeding and crying of stopping breathing and going blue but when mentioned to 3 different health professions told it was normal and she would grow out of it!! So we carried on with these episodes and just dealt with it.

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So everything was trotting along nicely then on the 3rd May I was rushed into hospital with suspected gallstones (now that is pain). I was scanned, drugged and in for a while and this was hard. My baby was only 5 weeks old and I was forced to be away from her.

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So i was discharged to be review in a couple of weeks time but my little gallstones had other ideas and I found myself back in hospital 2 weeks later but this time was much worse. I would rather give birth 10 whole times than deal with this!! Then my lovely doctor muttered SURGERY so on the 23rd May I went down had my surgery came out and was handed this…

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2 maybe 3 they told me but I was pain free and going home. We stayed with my parents while I recovered and good job we did as on the 1st June Leya was blue lighted to Barnstaple after a massive episode of not breathing and going blue. We got to the hospital and she was X-rayed and found to have a chest infection but they also thought she has a floopy larynx which was the reason they thought she was stopping to breathe. She was kept in with a review in 8 weeks time.

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So home we were doing well the antibiotics had done their job and things were looking up!! Until the night that changed ours and our little princess’s life!! It started as a normal day but Leya had been rather sleepy and off her feeds which is really unlike her. At 5pm she had another episode but this was the worse she had ever been so we called the ambulance as normal. The first responder arrived and she had a further 6 episodes in front of him. Then came the dread and most heart-wrenching words air ambulance, this is when we knew it was serious.

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We arrived at Derriford and she was seen by the ENT team where they put a camera down her nose (I didn’t see this as couldn’t bare my little girl having to go through that) but daddy was there the whole time. They kinda said yes its a floppy Larynx so we got used to that idea and that she would grow out of it. Then the ENT specialist came round Monday and this was the day we got her diagnoses she unfortunately had the not very well known and not so common Bilateral Vocal Cord Paralysis. This shattered our world. So many questions… What did this mean??….Would she talk??….Would she get better??..

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So the hardest decision came on the 17th of June when Doctor Rainsbury came to see us and voiced how he felt that a Trackeostomy was our only option to keep Leya’s airway open and to give her the best chance to recover. This was the biggest blow in the world but we didnt really have any other options. So on the 18th June she went down for her operation. This was the longest time for me, Dan and Leya’s Nana who was here to support us. After 2 hours the Doctor called us round to see her. The diagnosis was confirmed.
Leya was crying but there was no sound coming from her and this was the most sinking feeling in the world and I found myself in floods of tears. My baby daughter who was still only 11 weeks old has had this major operation and she was so upset but yet couldn’t let us know. I would have given anything in that moment to swap places with her.

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The next few days were hard for myself and Dan, getting used to the new sounds or lack of, suctioning Leya so she could breathe and just coming to terms with what has happened. But it was all made better with the fact this strong, inspirational tiny baby was still smiling and giggling away.

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So the last few days have been hard as Leya hasn’t been keeping her food down so is being fed through her NG tube as she has lost weight but is still loving her baths and all the attention she is getting from the nurses.

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Me and Dan have been learning how to suction Leya ready to go home and care for her which is a massive learning curve but we will manage. With this condition we are facing a lot of unknowns as we don’t know if Leya’s vocal cords will get stronger or if they do when this will be. So as of today we are happyish, sleeping on mummy having cuddles and looking forward to updating you all next week!!

Sorry its been a long post but now you know our story it will just be updates as and when they happen!!

Leya’s Facebook page please like and share!!

https://m.facebook.com/story.php?story_fbid=10204194742775523&id=1435478768

Lots of love

Dan, Casey and Leya xxx

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