Tag Archives: hard times

Anxiety, Depression and Opening Up

So to start with I want to say this post is really deep (sorry guys) but I feel that I can share with you guys how Im feeling as part of what i have learnt is to share how you are feeling can help!!And tbh its easier to write it down rather than actually speak to people.

First off I want to praise all the nurses at Derriford hospital and how they have supported myself and my family throughout both our visits!! Im really glad of the support from the nurses these last few days!! I have really been struggling for a couple of days with the not knowing and the lack of control I have.

Some of you may know that I suffer from Social Anxiety Disorder and Depression. I have suffered from both of these from quite a young age. I have had counciling many times but until I was ready it never worked. But when I was ready I learnt that a good way to keep myself from having a downward spiral was to open up by either talking to someone or writing it down!! So here I am choosing that at this moment it is easier to write it down.

The way I manage my anxiety and depression is to have control, be organised and to be with familiar people. So as you can imagine atm none of these are within my grasp. But the nurses at Derriford have been amazing at reassuring me regard how im doing but also how Leya is doing. Being isolated due to waiting on the whooping cough results has also be a major factor to me struggling as I feel that doctors arent taking me seriously and my paranoia makes me doubt if they think I am making this up or worse than it actually is!!

So today we had Leya’s heart scan which came back normal!! MASSIVE sigh or relief. But on the flip side to this it means that we are no closer to find out what is wrong with her. But her smile is what is keeping me sane atm!!

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So with this result we are still in the dark with what is causing these episodes. This is what I am struggling with, I know that we needed to have the tracheostomy because of the VCP but we were told that this would stop these episodes so for them to have carried on I kind of feel responsible. As many of you parents out there if your child has ever been ill you will know that you would give anything to swap places with them and that couldn’t be more true at this present moment.

So the last few days I have been feeling really down, useless and just generally crap!! I have been told Im allowed off days as what Im going through is a lot but they way my mind works is that Dan and our families are going through it too and they are coping so this is turn makes me feel worse. Its a viscous cycle my emotions but I am trying to grab them and keep hold of them very tightly as to gain control of them. Its a much of me feeling useless as frustrated!! I just feel that my head can not take any more bashing against this rather large brick wall!!

On a happier note we have got Leya’s humidifier for home and we have the funding for this one and a spare just in case!! And its rather fancy and we have seen an improvement with Leya’s dryness which is a improvement for her as it means less suctioning and less nebulisers.

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She has also put weight on so she has gained what she lost and put more on but she had been on IV fluids so we are expecting some of that to come off and the dietician will be extra happy with her if she keeps going like this!! She now weighs 11.7lbs!!

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So to finish this blog I just want to say that I have written this as much to help me get things of my chest but to also show others that you can talk about mental health as there is still a big dark cloud about it!! It is not a weakness, it can not be helped, it doesn’t control you or make you any different from anyone else and it has taken me a while to understand this. So for anyone who reads this with the same problem keep your head high when your feeling down as your just as normal (whatever that is) as everyone else!!

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

Email: leyasjourney@hotmail.com

Lots of Love

Casey xx

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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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