Flourishing Florence

A lot of my blog post are centred around Owen, but today I wanted to write a post focusing on his twin sister, my strawberry blonde haired little cutie Florence.


Today as I write this, we are celebrating yet a another milestone, A year ago today Florence left Watford SCBU and came home.

I remember saying at the time it was a bittersweet day for us as a family. We were so so pleased and overjoyed to be welcoming Florence home where she belonged, But also very sad as we had to leave her twin brother Owen behind, who was still very much under the care of Watford SCBU.
During our time in special care we saw many twins come and go, some shared the same cots, some also were in separate parts of the unit for a time, but all the twins we saw go home, all went home together.

Florence wasn't as sick as her brother Owen, but she did have her fair share of ups and downs.  Sometimes as she got older and stronger, we took her growth and comparatively easier journey for granted, She was the well one. We soon felt the crushing pain as she took a turn for the worse or had a setback. I remember feeling so guilty when a blood transfusion was needed that we didn't see it coming. On the first day Alex dared to go back to work, Florence became unwell with an infection. That meant Florence was on minimal handling, I would miss out on my favourite time of day skin to skin or cuddles. All I could do was watch her. Without being able to do her cares or hold her I  felt useless that day, useless and so alone. I was so thankful my friend Marie came for a visit that day, I don't think she knew how much I needed that (until reading it now no doubt)
Luckily later in the day, One of the nurses decided that a small cuddle wouldn't hurt as long as Florence was wrapped up well. I was so thankful for that hug it was very much needed.

I know in my first blog post I explain her name meaning of  Florence was"to Flourish", But we actually didn't pick her name for its meaning, Florence was one of the few names that we Both liked. Same goes for the name Owen. 
Moments after we found out at my 18 week scan that we were having a boy and a girl we agreed on names. We sat back in the waiting room at London University Hospital staring at our newly printed out scan pictures, "So that's Owen and Florence then?" exclaimed Alex. Later instead of twin a and twin b we nicknamed them "O and Flo".. and we never did question or change our minds, it just felt right. But we did keep it a secret.

The twin's middle name's were a different story, we were stuck. We had a long list but could not decide. The day of my emergency C-section we still hadn't decided. I was in my hospital gown awaiting to go up to theatre, the girls still by my bedside awaiting my mum to pick them up. I pulled out my list.. "Come on guy's we need to pick names" I was determined that if they were going to be born early and whisked away from me the least I could do was give them names from the start. The thought of them being up there, away from me nameless was too much to bear. We picked "Harvey" as a middle name for Owen as it meant "Battle worthy" we knew he was about to fight a real life or death battle. Bethany picked the middle name Ella meaning "Ray of Light". I wrote their whole names down "Owen Harvey Skelton and Florence Ella Skelton" and told Alex to keep it on him and pass it on to the neonatal staff before both babies went across to SCBU.

 Florence is my "Ray of Light" in the most darkest moments

When Owen was at his sickest, sometimes the noise of his vent going up and down and the noise of the alarms constantly ringing was just too much too bear. The magnitude of just be able to sit and stare, saying silent prayers would just get too much. At times like this I would go and sit with Florence.  As Florence wasn't as sick as Owen I was able to do more for her. I could do her "cares" I could hold her, I could "Mother" her. Those moments were precious. Florence gave me extra feelings of hope and strength, I would then go back to Owen passing on to him her hope and strength.

Even when she did come home, Florence never did escape from SCBU for long. Florence became a daily visitor to SCBU. The Nurses arranged for a cot to be set up in Owen's side room next to his cot.
For 6 more manic weeks Florence and I would make the crazy journey of dropping off the girls at school, hurrying back to the hospital ,to be on time for Owen's morning feed and "cares". We would stay until it was time to pick up the girls back up from school, sometimes we would all then come back again to visit Owen. Sometimes I could stay longer if the girls were being picked up by someone else.
 It was a strange and hard situation. All the staff did the most they could to make it work, as they knew it was the only way we as a family could cope.
 I remember one day as I pushed Florence our of the special care unit in a single pushchair kindly lent to us at about 7 o clock, I was stopped by a nurse from a different department who I had never met before, questioning why I was leaving the special care unit with a baby, until then I didn't really realise how strange I must of looked coming and going casually bring a baby in and out of a highly secure unit.


               








 I often joke that Florence doesn't think she is a ex prem baby, she likes to smash through her milestones. Florence amazes me everyday,she has come so, so far.  Florence is such a determined little character and cheeky beyond belief.
Over the year Florence has remained true to her name and "Flourished"

 

1st Birthday Celebrations!!!!

A few months ago I wrote a blog for mojomums about my thoughts and my emotions as I counted down to the Twin’s 1^st Birthday and as how as part of their 1^st birthday celebrations we would try and raise money for Watford SCBU.

I am overjoyed to announce, by sharing our story and asking for donations for such a wonderful cause we managed to raise £430!!!

We are truly overwhelmed by everybody’s generosity and want to thank everyone for their support and help in raising the amount we did.
(Although you still have time to make a donation, just go to www.justgiving.com/owen-florence )


The week counting down to the Twin’s 1st birthday was an emotional one. During the darkest days bringing both babies home seemed such a distant dream, we couldn’t even dare dream of reaching such a goal of a first birthday, now a whole year later we all had made it!!!

During that week I kept having vivid, mainly distorted surreal dreams of flashbacks our time in special care mixed up with the present day. One dream/nightmare I had was a flashback to one particular day, Owens darkest day.. But in this dream Owen wasn’t the tiny prem baby of the past, as events unfolded the same, This time Owen was the 1 year old baby he is today.

Buying presents, decorations etc left me exhausted which added to my emotional state. Towards the end of the week the party preparations took over pushing unruly thoughts out of my mind. The only darkness that hung over me now was the weather forecast which predicted thunder storms and rain on the Saturday, Party day. Whatever the weather, nothing could put a dampen our sprits.

Thursday I baked and baked, Friday my mum and I iced and iced our cupcakes, finally “The Hungry Caterpillar Cake” was made. Alex picked up the balloons .. Lots of them!!!!
Presents were wrapped. Decorations put up. We were ready.

The day arrived!!! In the morning we all went downstairs and the big sisters proudly helped Owen and Florence unwrap presents and cards. It was quiet and relaxed it was the 6 of us, it was perfect.

We soon got busy with party preparations and before we knew it the party was in full swing. Sounds of Family and Friends, laughter and celebrations filled our house and garden. Birthday wishes cheered, presents and cards piled up,

It truly was a day of happiness and joy. Our beloved babies were surrounded by Love. Thank you to everyone who made it special. We felt truly blessed.

A few days after the party we made a visit back to Watford scbu, armed with cupcakes made by a lovely talented local cake maker. She also did our wedding cake. When she heard about our cause she was keen to get involved as her goddaughter too was born prematurely and was under the expert care of Watford SCBU. Denise of Tapestry Cakes made us a lovely huge box of cupcakes to thank the staff for free, suggesting we donate the fee to our cause. It was a lovely gesture.

It truly was so nice to see everyone who was working that day again.
The staff were so happy to see us, as we were to see them. It was just like visiting Family. We told them about our fundraising, and they said we could have a say in what the money was spent on.
Walking up and down that dreaded corridor brought back memories of all the times we walked the walk,  be it walking towards the babies wondering what that day would bring or walking away with tears building in my eyes as I left my babies for the night.
It felt very strange when the visit was over to walk out together, all six of us. It was lovely.

Going back to where it all began was such a lovely and poignant way to celebrate Owens and Florence’s first birthday.

Speech Assessment

We had Owens Initial speech therapy assessment at home today.
Owens speech and ability to communicate has always been one of my most prominent worries. Communication skills are vital to enable Owen to interact, form relationships, to communicate his thoughts and ideas, to learn and potentially work. Communication is undoubtedly the key to fully participating in the world we live in and to independence.

Before this appointment I had lots of thoughts going through my head.. What if they told me "No... nothing we can do, he won't be able to speak or communicate"? What if? What if? Always so many questions.

I was pleased to find that the speech therapist was the same lovely lady that worked with Lilly before she started school. Firstly I was relieved that she had obviously studied Owens notes before she came to me. That meant I didn't have to spend the first half of our appointment going through Owens "Medical Back History" ( its a long and complicated one as you can imagine)

 Owen can only make vowel sounds, but does so more frequently, particularly when playing. Owen has his own ways to communicate his needs.. facial expressions, different cries, body language etc.. She said this was all such a positive sign.
The speech therapist said we could start using a few Makaton signs for him, like the sign for "more" (Makaton is the sign language Mr Tumble uses) At the moment his high muscle tone will not allow him to sign himself, but hopefully in time this will be a real possibility. I will also attend a course at some point all about Makaton signing.

Unfortunately there is a 6 month waiting list for speech therapy. Although the Speech Therapist said she will be visiting the Opportunity Class we attend, so will see Owen there in the meantime. 
(Opportunity class is an early invention, teaching parent, special needs playgroup.  I  attend a weekly session with Owen and Florence during term time. It is basically like a playgroup/nursery that parents attend with their children, except the children attending have various additional needs. The "teachers" are highly a specialised early years for children with special/additional needs.)

The assessment was soon over and she said that many of Owens problems were probably more developmental delays than anything, she also said when leaving that she really looked forward to working with Owen and his family. She left me with plentiful of ideas, but most of all she left me with HOPE.

No particular reason for this picture of Owen other I just love it. xxx

Harry Potter

Chapter one " The Boy Who Lived"

The book tells the story of a baby who survived the most dark and powerful evil in the world.
He survived because his mother stood by his crib and protected him with her love.

The boy is left with a scar on his forehead.  The scar symbolizes everything unique and astounding about the boy.
The boys forehead scar is a badge of honour,   an emblem of having survived a great battle and of being destined to wage further more battles.

Owens "Harry Potter" scar 

Owen and mummy

Baby Blue Eyes

Even though I tried we still couldn't escape from all of Owens appointments last week while Alex was off work.

Tuesday, Owen had an eye appointment at the hospital. As it was an  rescheduled appointment made through the post and not one I had made, I didn't know who I was seeing.  The letter didn't detail this and after phoning the number the receptionist couldn't tell me either. 
 Owen usually sees an Ophthalmologist, they are doctors who deal with all aspects of eye care including Vision services, Medical eye care, Surgical eye care, Diagnosis and treatment of eye conditions and also Plastic surgery.
 Last time at Owens eye clinic he also saw an Optometrists, They mainly focus on regular vision care and prescribe glasses and contacts. That day we were taken to the waiting area to wait to see the Optometrists.

Owens eye problems started in while in Special Care. Babies born before 30 weeks have retinal eye exams, the first one being when they are about 4 weeks of age. They are checking for a condition called Retinopathy of prematurity (ROP)
During pregnancy, the blood vessels in a baby's eyes begin to develop at around 16 weeks and by 34 weeks the blood vessels in the eye are well enough developed that the retina has a good blood supply.
When babies are born early, the blood vessels on the retina are not fully developed. After birth, the vessels may begin to grow too quickly. that they damage the Retina. ROP is the most common cause of childhood blindness. There are 5 stages of ROP; stage 1 is mild up to stage 5 is total retinal detachment.
At one of Owens eye exams he was found to have stage 1 ROP which they would check again in a few weeks to see if it had got better or worse. The next  booked appointment was actually the day after we were discharged and ended up being my first solo outing with both my twins. That appointment showed no change.  After two more appointments Owen finally got the all clear from ROP, But was found to be longsighted, this may improve as he grows or he may need glasses....  Glasses I can live with.

I have always questioned Owens sight, Owens eyes looked too low and unfocused he would just stare with blankness. People would ask how much I thought he could see. Even now people ask if he can see as he is not always fully focused. The answer I don't know, I know he sees something, but his sight is definitely variable. I know at the previous Ophthalmologist appointment apart from being  longsighted nothing else was found to be physically wrong. I do wonder if its the PVL raising its ugly head again. I wonder how much of what Owen eyes see, his brain computes.
I read about a condition called Cortical Visual Impairment (CVI) it's a condition that is caused by a brain problem more than an eye problem. When reading about CVI it suggests by doing certain exercises you can retrain your brain to see more clearly.

Anyway going back to Tuesday, Learning that our appointment wasn't with the Ophthalmologist I did feel slightly disappointed as I was armed with questions.  The Optometrists  proceeded to shine a light in Owens eyes, which he failed to follow. I explain how I felt his sight seemed variable and asked why? She didn't answer and got off her chair and went over to a drawer to search for something more "fun" for Owen to look at, She pulled out a pencil with mickey mouse on top.... Very exciting? Owen still failed to follow,  but when she went back to the light he started to follow. "Yes he is definitely variable" 
I tried to ask her a few more question but she wasn't very forthcoming. She did however give me a slip to make an appointment to see the Ophthalmologist. Unfortunately the appointment isn't till October so I guess I will just wait and add my unanswered questions to my very long list of unanswered questions.

Owens eyes looking more low down.

 

A little more focused and in the centre

Very centred and much more focused

Raining tears of laughter

Last week was a very busy one in the Skelton Household, Actually in our household it is always a busy week in one way or another, but last week it was busy for much more fun reasons.
 Alex had a whole week off work. This was particularly good as for more than a year this was the only time poor Alex has had off work, which has not been due to spending time in Special Care or Hospitals, Attending appointments, Being ill or looking after the household while I was ill. Alex's week off was very much overdue.
 We was hoping to plan a last minute UK get away, But as our too "small" car hasn't sold, we are still stuck for transport, so family days out were on order.

We started our week by going to one of our favourite places, our local park Cassiobury. All the family went including our mad hatter springer/cocker spaniel "Fergie".  Fergie has recently got so much better off her lead, so instead of us walking the pulling steam train, it was a much more of a pleasant experience. Fergie loves her new found freedom and particularly loves bouncing through the long grass chasing butterflies. It is such a joy watching her big floppy ears flapping up and down her long comical tongue hanging out to one side.. watching her care free nature you can't help but smile.

 Alex decided to take an exhausted Fergie home, while the girls put on roller skates and we slowly and tentatively made our way to the playground. 
 Not long after reaching our destination a dark cloud suddenly descended over us and then a few drops of rain fell from the sky, the drops fell faster and harder. I quickly unfolded the raincover and impressively threw it over the pushchair as the rain started pelting my back as I leaned over. I called over to Lilly and told her to run for the trees as the heavens opened. Sounds of panic were let out as families sped with pushchairs filled with tearful babies, rounding up children, grabbing picnic blankets and other items brought for a sunny family day out on the way. Everyone too scrambled torwards the trees. 
I looked for Beth, she was sheltering under a slide with one of her best friends who was also in the park. I ran to Beth passing her an umbrella in hand and she slowly made her way on roller skates under the tree. More than 30 of us were sheltered under the same small group of trees. 
The girls and I found this Hilarious. The rain slowed down, so I checked my phone to see a number of missed calls and text messages from Alex.
Alex had managed to get back to the park after taking Fergie home and was under a shelter at the top of the park dry as a bone. We made a couple of attempts to meet him but each time the rain started again causing us to retreat back to the same trees. Beth finally took of her skates and when the rain again died down from a tropical storm to a shower we took our chance to walk up the park in the rain, jumping in puddles on the way to be reunited with Alex.
 A dry Alex couldn't hide his laughter as he saw us drown rats walking torwards him.
Something about getting caught in a down pour is exhilarating.. and just plain funny.

A photo of us hiding under the trees

Rain appeared a lot during our family week, but we didn't let it stop us having fun.

 "Life's not about waiting for the storm to pass, it's about learning to dance in the rain"

 

 

 

 

About a Boy Named Owen

Owen as I have already mentioned, was born 12 weeks early at 28weeks alongside his twin sister Florence.
Owen had it tough while in SCBU, there were many many dark days where all we could do was sit by his incubator and just plain HOPE.
I will at some stage probably go into more detail about our experiences in SCBU but this post is basically just a quick overview of his medical story.

Owen has Chronic Lung Disease and came home on oxygen to be weaned off it completely by the end of January.  Owen was also diagnosed with having PVL after a routine head scan followed by a MRI scan two weeks before coming home from SCBU. He has some kind of Cerebral Palsy because of the PVL but we have not got a definite diagnosis of "which type" he has as yet.

http://www.scope.org.uk/help-and-information/cerebral-palsy/periventricular-leukomalacia-and-cerebral-palsy

Owen as you can imagine has lots of Hospital and Doctors appointments. He has Physiotherapy and Occupational Therapy and we have to do his movements, stretches, exercise and play therapy on a daily basis. Owen also is part of an early intervention programme and is waiting to see a speech therapists who will also do an eat study.

So in a very small nutshell.. That's about a boy called Owen but only in medical terms as there is so much more to Owen than his medical history and on going problems.