Claire Storey's Photography: Blog https://www.clairestoreysphotography.com/blog en-us (C) Claire Storey's Photography clairestorey22@hotmail.co.uk (Claire Storey's Photography) Sat, 26 Sep 2020 13:15:00 GMT Sat, 26 Sep 2020 13:15:00 GMT https://www.clairestoreysphotography.com/img/s/v-12/u634765567-o417657420-50.jpg Claire Storey's Photography: Blog https://www.clairestoreysphotography.com/blog 120 120 Full Newborn Session https://www.clairestoreysphotography.com/blog/2020/9/full-newborn-session Ive been meaning to share a gallery from a full newborn session for a while,

but with covid in the way it hasn't been possible to even do them, last week I had the pleasure

before it all go crazy again.

I wanted so show roughly what I get and what you can expect from a full session.

So here is sweet Jalen full gallery from a full newborn session, 11 days old and just over 6lbs... 

 

 

Ive been wanting to share with you for a while now what you can expect with a full newborn,

but the delightful covid put a halt on my full sessions, luckily I managed to get this wonderful 

gallery before we peek again.

So Here is a full newborn gallery of beautiful little chap Jalen, just over 6 lbs and 11 days old 

 

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clairestorey22@hotmail.co.uk (Claire Storey's Photography) NEWBORN PHOTOSHOOT https://www.clairestoreysphotography.com/blog/2020/9/full-newborn-session Sat, 26 Sep 2020 13:15:11 GMT
My baby is broken https://www.clairestoreysphotography.com/blog/2018/9/my-baby-is-broken My baby is broken, She'll never be fixed...

I feel it's time I lifted that weight off my shoulders and updated you on how far we've come in the last 2.5 years with our princess.

Its been a journey and its taken some time to adapt... My baby is broken, that's the words I had running around my head, I couldn't get my head around what Spina Bifida meant for her.

*Spina Bifida 

*Myelomeningocele 

*Spinal cord

*Nerves 

Can you even imagine your precious newborn being born and hearing these words? She had a blister on her back, filled with her nerves and spinal cord in spinal fluid.. To this day I still can't believe it happened and wasn't picked up on her ultra sounds!

Her lesion was closed, nerves and cord safely dropped back into her spine, she was fixed? No not fixed the damage is done.

So here we are today nearly 2 and a half years later. This is what we know;

At 6 weeks she had an MRI scan, its showed she has a tethered spine, this will mean forever follow ups with her neurosurgeon and risk of needing a detethering, usually around the age when a child has a growth spurt; 4-5 years and 9-10 years old. Signs will be change in bladder or bowel, loss of movement and paralysis.

Just one of our worries.

At 3 months she had her urodynamics, this told us she has a neurogenic bladder; this condition requires Intermittent Catheterisation, every 3 hours, to drain her bladder and keep her kidneys safe. Years ago children wouldn't survive past teenage years due to kidney damage, over the years we have learnt how to protect their kidneys by doing the I.C procedure.

We then began to learn she had a neurogenic bowel too. For us its been the most difficult thing to manage and live with, we do an irrigation x2 a day to help empty her bowel. Without this procedure Remi was becoming very sick, her weight was dropping.

We have her at a healthy weight and very good appetite now, but things in this area aren't perfect yet. Her consultant has mentioned an ACE procedure where her appendix will be used to make a hole in her tummy so we can flush her bowels from the top of her colon giving her a better empty. This will be a decision we hope she can make for herself one day.

Medication 

*oxybutynin  x2 a day

*trimethoprim x1 a day

*Senna x2 a day 

*movicol x1 sachet daily 

That's 6 lots of meds I have to give her everyday, since birth and forever.

She walks though, in fact she walks bloody well! She has muscle weakness; her ankles are weak and loose flexible, a good pair of supportive boots or her braces work well for her.

We've come to terms with the management of taking care of our princesses needs, its all we now know and all she will know.

Things are about to become unbelievable now and very very unlucky....

On July the 3rd she become very poorly. We had open access to the ward due to her SB so I took her to get checked over.

She was having very high temps and was in too much pain to be able to move. She had an horrendous rash. A UTI we initially thought. Nope! So just a virus then?

This continued, and everyday I took her back. On the 4th day I was concerned because she had red eyes, her hands and feet were red and she wouldn't let them be touched. A doctor mentioned Kawasaki Disease but said how rare it is so don't worry, after a consultant swabbed her throat and said it'sprobably strep throat...

I went home with some antibiotics thinking thank god she'll feel better again soon.

The next day she was 100 times more poorly, her lips were peeling and she was inconsolable. I took her back!

After a blood test she was quickly admitted and I was diagnosed with Kawasaki Disease....

At her sickest :(

I couldn't bloody believe this was happening, you're being over-cautious I told him. He said he was the oldest doctor on the ward and he was the least likely doctor to be over-cautious! He was Remi's paediatrician, he was there the day she was born. Just bad luck he told me for the second time in my life. He acted quickly and I thank him very much, despite our bad luck Remi wasn't to be failed this time. 

She had the treatment; an Intravenous Immunoglobulin transfusion.

Started to feel better

It was awful, second worst time of my life. 5 days in hospital. She got better, but of course this rare childhood illness has risks. It cause the blood vessels to become inflamed which can develop aneurysms to the heart, Remi was treated in the 5 days which means aneurysms are less likely. We did 8 weeks on a high dose of aspirin to thin her blood. 

We had heart echo and ECG, we have been extremely lucky she didn't develop any. We continue with this and she has regular check ups with cardio. just another specialist to add on the list.

Another 2 years of checks and if no aneurysms we can wave goodbye to Kawasaki's disease.

 

As you can image I felt blame, why her? Her SB is my fault, I broke my beautiful princess, I failed to grow her properly and now this..

I felt god wanted to take her from me, she's not supposed to be here. I quickly fell into a state of depression, I had my first panic attack.

What the hell was happening to me, my hands like pins and needles, I turned into Edward bloody scissor hands, I thought I was having a stroke.

Richard was more pissed off that not only did his daughter have Spina Bifida, his wife turns into Edward bloody scissor hands haha... sorry but you have to lol

I started cognitive behavioural therapy. Despite the crazy therapist, it helped me lots. It's something I control especially when things begin to pile on top of me.. Breathe, I understand it and that was the first biggest help.

Its been over a year since that second shock in her life (bless her teeny tiny precious heart)

In my crazy life and schedule we muddle through, business is blooming.

Well I am who I am and they say it happens to the chosen ones, the ones who can cope, the ones who "can" , and I'm not going to lie, I'm not the sort of person to do nothing.. I hit life 100 miles an hour and it hits me straight back, I'm a busy body always with a plan, always got a project and something to do.

When life is terrible, take a breathe let the house get messy feed the kids maccy Ds.. Give it time because time is the greatest healer, time to adjust to what ever life throws at us because the impossible is possible and if I can continue to run my own business, take care of my boys, dog and husband (even tho he's the feeder). I couldn't do it without him, we'd all starve to death lol then my sweet princess will be ok.

I want you to know I'm happy, I feel extremely blessed and despite the downs I wouldn't change a thing... having the downs make the ups a whole lot more amazing if we never had downs.

Anyway my husband is picking his nails (annoyingly) refusing to stop because me typing this is more annoying apparently... Arsehole ;)

My journey continues and I thrive to photograph my beautiful children <3

 

 

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clairestorey22@hotmail.co.uk (Claire Storey's Photography) attack bifida CBT cognitive behavioural therapy disease Kawasaki disease Kawasakis panic panic attack spina spina bifida https://www.clairestoreysphotography.com/blog/2018/9/my-baby-is-broken Sun, 09 Sep 2018 20:40:50 GMT
Cake smash vs Sitters session https://www.clairestoreysphotography.com/blog/2017/4/cake-smash-vs-sitters-session Ok so finally got round to writing another blog, with 3 children a husband, dog and 2 businesses between us I've been a little distracted!

So what better way to discuss 2 unique but different types of photo sessions, the Cake smash vs the sitters session.

The cake smash, the perfect way to celebrate your babies 1st birthday, with a whole cake to themselves, to smash up and explore... This was sweet Elodie... Elodie was straight in there, not a smasher but definitely explored the cake with confidence!

See the thing is all babies are different and you get different reactions with every smash, 1. The delicate picker (the picker) 2. The hesitant's (the unsure almost in denial) 3. The demolisher (yep you guessed it they destroy every piece)  4. The surprisers (you think they're not playing ball then they shock you and get right in there) 5. The givers (want to share the cake with all humans in sight) 

 

Ethan id say he was number 4 he was a little unsure but then surprised us.

Arlo 1 and 3... 

This is just a little peek into my experience over the years photographing cake smashes, not only is it fun its a way to capture your baby on its 1st birthday. 

I found the biggest difference between the cake smashes and sitters is the difference between babies age, from 6 months to 12 months. The sitters 6-9 months, literally sitting unaided, capturing the innocent age of a 6 month old baby, not yet able to run away and enjoying the attention of a smiling grown up, they just smile, they sit with they're baby fat rolls and smile.

Its simple but beautiful and if you wasn't able to capture a newborn session its the perfect opportunity to capture them as babies. A 12 month old on the other hand is a little more challenging, they can move quick, i mean super fast, luckily i have pretty cool lighting which freeze the image to keep it crystal clear, they can also be a lot more knowing, they know they're somewhere new and they make me work a little harder for my money ;) 

I hope thats not coming over negative because believe me watching your 1 year old having a cake smash is a perfect insight to seeing the little personality they've developed in the 1st year of their life. 

 

Sweet Nell, nothing but smiles from this princess.

Barney bear.... had me melting into a puddle.

Stanley and those eyes <3

Matilda those eyes again <3 Mila the perfect little sitter.

Of course if you can have both sessions great, but if you had to choose? 2 very different sessions.

I hope you've enjoyed my personal experience and images over the years, i guess this just makes Monday the 24th a whole lot more exciting for me, yes you guessed it my princess Remi turn 1.

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clairestorey22@hotmail.co.uk (Claire Storey's Photography) cake cakesmash newborn photographer photography session sitters smash https://www.clairestoreysphotography.com/blog/2017/4/cake-smash-vs-sitters-session Fri, 21 Apr 2017 09:21:44 GMT
Living with Spina Bifida https://www.clairestoreysphotography.com/blog/2017/1/livingwithspinabifida It's coming up to a year now... a year since my baby was born. My mind is going crazy with memories and the emotions I still feel so strong, as if it were yesterday.

Having a 3rd baby - do I, don't I? This was a decision that I didn't come to lightly. Running my own photography business, I knew having a 3rd wouldn't be easy but I knew if I didn't do it then, I never would and didn't want to get 10 years down the line and regret never having a 3rd baby. So the decision was made! Being 32 with 2 boys aged 4 and 7 at the time we knew having a 3rd would be like starting all over again.

I made an appointment and had my coil removed after 4 years. I went straight on folic acid and we started trying to conceive. After a couple of weeks of trying I had my period, so no baby! Of course, being older and only trying for 2 weeks and not a single period for 4 years it's what I expected and what my body needed. Tests revealed that ovulated a week or so later and 2 weeks after that I had a positive test. I've always conceived quickly so wasn't surprised… much to my husbands disappointment lol… he'd very much prefer we keep trying hehe!

From the start this pregnancy was different to my previous two; I bled 6 weeks in and after having a miscarriage before I assumed I was having one again and although I felt sad, I was ok with that as I knew I was very early and these things happen for a reason. I had a scan and was told everything looked fine and the baby had a strong heart beat, I was happy of course but still cautious. I continued to bleed so had further scans and was repeatedly told there was a strong heart beat and everything looked fine.

I got to 18 weeks and couldn't wait, I had to find out the gender. We took the boys and had a private scan. When they told me I was having a girl I couldn't believe it, I cried for an hour, pure happiness, I felt like the luckiest girl in the world, i would have 2 boys and a princess.

The morning of my 20 week scan (the one where they check for complications) I had a bleed. Only 2 days before a lady told me she was pregnant with a girl and lost her at 20 weeks. My head was all over the place, I couldn't help feeling negative and worried that there was a problem and I was losing my princess.

I walked into the scan room crying! When the sonographer asked why I was crying, I told her I was bleeding and scared that I was going to lose the baby. She then told me how important the 20 week scan is for finding out if there is anything wrong with the baby, and how for most people this fact is over-shadowed by their excitement of finding out the gender. These felt like strong words, but I felt reassured that the sonographer would identify if there was a problem.

The scan went incredibly well considering the bleed and my worrying. She told me everything was fine and booked me in for a 34 week scan to check the placenta again as I had been bleeding. Reassured by this positive outcome, I carried on dreaming about my life with my princess.

I was a week overdue when I had another bleed, it filled the toilet, so in to hospital I went. They kept me in overnight and the next day they broke my waters. Within 20 minutes I was in established labour. Being back to back I was in a lot of pain but I was determined to have this baby with no help and get myself back home to my two boys ASAP.

The birth was OK. 4 hours roughly. I pushed my huge 9.11lbs princess out with nothing but a little gas and air.

I looked down and saw a scrunched up blue screaming face, she was finally here… I couldn't see what she looked like because she was screaming, that was a good thing as then I knew she was OK!

Then the room went quiet, the emergency button was pressed and they quickly took her away. I kept telling Richard (my husband) to find out what was going on, he looked pale and shocked, I just kept asking what's wrong??

I heard Richard talking to the hospital staff, he said “we don't keep secrets, I'm telling her”. I asked what was going on and he told me she had a huge blister on her back. My first thought was - so what, just cut it off, maybe it's just a birth mark. Then he said they were taking it really seriously.

Over the next hour I had different doctors coming in to speak to me. One crazy doctor was saying he thinks she has spina bifida. Spina bifida! I just felt sick. Oh no, I thought, people don't have these babies, that's why you take folic acid so you don't have "babies like this”. I realised how bad this was and said to Richard “Our daughter is disabled. Seriously disabled. She’ll be in a wheelchair, she'll never walk.” he was upset and angry.

After that, things just got worse. My body was in shock so I couldn't birth my placenta and eventually I passed out. I came round in the theatre room and reached for someone, I said “don't let me die, my boys need me”, she laughed and said “you’re not going anywhere”. Then I heard someone say there was a very angry man in the birthing room and the surgeon replied “that's not surprising”. I lost over half my blood and was left unable to move due to the spinal block that was needed for my surgery.

When they took me back to the room (all a blur) Richard seemed ok, he didn't seem angry, he was trying to be strong for me.

Remi was taken to another hospital and we were left in the birthing room for 12 hours! 12 hours to think the worst, 12 hours of separation from my daughter who I didn't yet know. I was grieving the loss of the "normal" baby I thought I was having.

I was taken by ambulance to the same hospital as Remi where I was wheelchaired to the intensive care unit where she was. I cannot fully explain the the pain I felt in my heart. I’ve never cried so hard, my heart was pounding. I just kept thinking “what will she be like, what if I can't bond with her…"When they took me to see her I realised I didn’t know what she looked like! I couldn’t recognise my own baby. But there she was… the only baby there laying on her front. She was beautiful, so fresh and pink. All I wanted was to take her out of this nightmare and go home. Oh, how I longed to hold her.Not even a day old and my princess had to undergo a 5 hour surgery to close the lesion on her back.

Then it was time for recovery, bonding and getting to know what spina bifida means for us as a family.

Over a week of intensive care and we were allowed home, just for a little while, to bond with our baby. I learnt how to dress her wound at home and do the nurse bit myself. This was followed by numerous visits to hospital to learn how to deal with the special needs of a baby with spina bifida.

We had so much to learn and understand and now, nearly 9 months in, I couldn't feel anymore blessed! From the heart ache, agony and worry of having a child who will live in pain and suffering, to seeing a pure beautiful princess who was very nearly not here. Far from living in pain and suffering, Remi is thriving, happy and loving life. Who was to decide she shouldn't be here in this world? She's her own little person developing her own personality who we love so dearly. All I can say is how lucky we are to have her and how it just kills me to think of life without her.

Remi’s is the first case of undiagnosed spina bifida in 15 years.

Seeing the defect (open spine) on the scan picture shortly after her birth, made me realise how close it was to her not being here. With the bleeding and the worry, if I was told there was a problem, my baby girl wouldn't be here today. Remi has Myelomeningocele Spina Bifida… she is even more special than we ever expected.

Our journey continues and I can't wait to watch her take her 1st steps, whatever help she needs (if any) we live in hope and positivity.

She is an inspiration, she will live a fulfilled and normal life and I will make sure she is proud of who she is.

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clairestorey22@hotmail.co.uk (Claire Storey's Photography) spina bifida https://www.clairestoreysphotography.com/blog/2017/1/livingwithspinabifida Sun, 08 Jan 2017 17:59:07 GMT