Friday, 20 December 2013

Ophthalmology Appointment (eyes)

Before we are thrown full throttle in amongst the middle of the season to be jolly,  I thought I would write a quick post to give a quick catch up on one of Owens most recent appointments we have had.

It was Owens quarterly Ophthalmology Appointment, or Eye appointment.

(please read previous blog post “Baby Blue Eyes” for an background about concerns with his eyes)

Well this appointment was a quick one. We saw a consultant pretty much straight away.  The Consultant said that as we already ready discussed Owen appears to be long sighted, But apart from that The Consultant said there isn’t anything he can see physically wrong with his actual eyes.

Although Owen still does not fix on a light routinely and his eyes tends to deviate consistently to the left. Owen does not appear to have a squint. I told the consultant I have seen a great improvement in what I think he can see and that Owen has begun to follow movements much more. I also said I was still worried about the consistency of his sight as at times he appears vacate.

Owens Consultant then said he would refer for an appointment at Great Ormond Street where they would carry out an Electrodiagnostic Test. This would be a more in depth eye test looking at his optic nerve and retina. They would use electrodes to find out how much Owens Eyes sees and how much his brain registers what he sees. This test will be really helpful to give us greater knowledge about Owens sight.

We haven’t had an referral through the post yet, but will be sometime in the New year.
After this test, we have an appointment back with Owens Watford Eye Consultant to discuss findings. This isn’t till March.

I will obviously keep you updated.

Wednesday, 4 December 2013

World Prematurity Day – Thank you for the memories

Today is World prematurity Day so I thought it was the perfect chance to share a few of our moments and memories of our days spent in Watford Special Care Baby Unit.

Watford Special Care  Baby Unit is a secret world away from reality, It is  located on the top floor of the Maternity Block through a barrage of security doors.

Meeting my babies for the first time
Straight after the birth I only managed to get a quick glance at each of my babies as the staff from SCBU paused with there incubators giving me just the quickest of introductions before whisking off with each of them to the Special Care Unit. I remember two things with fondness from that experience; my total shock of hearing them cry at delivery and even more shock that when I saw them for those few precious seconds they both had there eyes wide open and seemed to be staring right at me.  Not long after they left I was about to be wheeled to recovery but took a turn for the worse, next thing I remember is having an oxygen mask thrust upon me. Because I was poorly they were hesitate to let me go and see my babies, After much pleading I was finally able to visit my babies for the first time the next day later in the afternoon…. As long as I was pushed in a wheelchair with a cylinder of oxygen attached in case I became unwell again.

Here are a few more pictures of some of our time spent In Special Care

Changing Florence’s Nappy 

Tuesday, 5 November 2013

Thinking of you x

I am so glad to see the back of October. It wasn’t particularly horrible or anything but it was so so manic. October was truly a month of appointments… places to go and people to see….

My poor calendar was chokka block… and that’s not even showing the appointments on my phone that never made the main calendar.
I am hoping November will be slightly less busy. Which is a hard task being a mum of four, But im already bracing myself for the festive month of December.
I just wanted to add that at times I do feel a great sense of guilt that Im not able to spend as much time with Family and Friends as I would like, But believe me I do think and care about you a lot.

Opportunity Class

I have mentioned taking Owen to Opportunity Class a few times, But I don’t think I have ever explained what it is.

“Opportunity Class is an educational provision for pre-school children with special educational needs.”

“Opportunity class offers play-based Learning. Each child has an Individual Educational Plan (IEP) which are targets which are aimed to be met and are regularly reviewed.”

The best thing about it is that Florence has been made an unofficial member of the class.
As it is focused on sensory and educational play based learning it will do nothing but further help her to flourish. Florence loves it and has grown in confidence while attending. Although she and Owen are the smallest and youngest members, Florence is the one of the most adventurous and cheeky.

During each session a full programme of play experiences is set up, which is then tailored to each child attending.

         For example they started with some messy play, one week this was shaving foam. Owen enjoyed this and seemed to love the feeling of the foam in his hands allowing his fingers to relax for a while. Florence too loved this, But she was more interested in eating it and when I tried to move her hands from her mouth decided to just go face down with mouth wide on to a plate full of it open into it.. yum???
we quickly moved to the crayon where she tried again to eat them. But did sit and play with a shape sorter for a while before wanting to escape.
the following week it was Jelly which she much preferred.

Owen meanwhile did some work with some switches (big buzzer type buttons which either themselves make a noise or light up or are pressed to activate a toy) He is almost getting the idea of pressing the button to make a reaction. (cause and effect)

After all that hard work Owen likes to go and chill in the sensory den, which has lovely colour changing fibre optic lights which are safe enough to pull about and even chew.

After play it is snack time, then free play, song time then home time.

Outside professionals also come along, for instance a physiotherapist may come and work with a child or children or do a group session or speech therapist may come and work. Opportunity Class is also linked to the advisory teacher service.

Each class is run by a qualified teacher and a nursery nurse who have undergone specialised training and have had experience of working with children with special educational needs.
In our case our class is run by two highly professional but so so lovely and caring ladies Lynne and Jo. Lynne started out as a primary school teacher and Jo as a children’s nurse.

I find in going to Opportunity class a great sense of support. Not only are you given information on local services and support groups but it is nice to meet other parents and carers who truly understand your unique situation.

Wednesday, 23 October 2013

Dear Owen – A year after coming home

Dear Owen,
                       Today we celebrate your one year Anniversary of your “Homecoming” The day when you finally graduated from special care. After 12 weeks and 5 days it was certainly a long time coming. At times during those “dark days” It seemed like a unreachable dream, But each time my hope started to fade you would fight harder and surprise us with your determination and turn that corner that needed turning and my hope would reappear.

I have learnt so much from you and from being your Mummy. You “Rocked My World”.  When I walked with you down that narrow path between life and death, it couldn’t help but to change me. It is hard sometimes when you feel your own personal world has changed so much to understand how the wider world has stayed the same. I admit I do, at times, find it hard to feel compassion for people with problems that are so easily solvable, if only given a little bit of time an effort. I just wish more people could understand  what you have taught me that “life is  a gift.”  so don’t waste it. Don’t get me wrong I am a willing sympathetic ear to those who choose to confide in me. Another thing this whole experience has taught me is the true meaning of Empathy.

I am amazed at your strength my little warrior, you inspire me to keep strong.
I am not saying to you that every day will be a battle, But I am afraid to tell you, but it is true you will have to work harder to do things that others take for granted.

When I think of how far you have come during this  first year  home, I am immensely proud. This time last year you seemed so fragile, coming home on oxygen at the start of the cold and flu season. I remember feeling so protective over you (.. and rightly so) Doctors, consultants and nurse all warning me, even if you caught so much of a sniffle it would most likely bring you back in hospital and could have severe consequences.  With hand gel at the ready, minimal public outings, visitors told to stay away if even a hint of feeling unwell and a rain cover acting as a shield. we spent as much of the winter in hibernation as possible.
Spring finally sprung, and we said our final goodbyes to the oxygen cylinders that filled our house.

It frightens me that Mummy won’t always be able to protect you. Sometimes I worry people will find it hard to look past your disabilities and focus so much on what you can’t do. They will miss the joy that you bring and not care about all that you have accomplished.
They will focus solely on your differences.
Maybe not always directly, Some people may hurt you with words. An inappropriate comment, Jokes told at your expense or cruel words muttered. Either way these words will hurt.

Yes My Owey, mummy is always pushing you to try harder, she is always dragging you to appointments and to therapies and opps class.. but if you want to know a secret.. my favourite thing in the world that we do together, is to snuggle!!! I especially love our little chats and that smile of yours…. What can I say about your smile.. Its the most beautiful, magical thing.. And I know for sure that your smile will always make others smile.

So my Owen, what  a busy year we have had. I can’t wait to see what adventures are we going to get up to next?

Love You Lots Always
Mummy
xxxx

Friday, 18 October 2013

Busy, Busy, Busy!!!

Wow… I sit here at the laptop, glass of wine to the right of me… I last posted here over a month ago!!!

What a crazy, sometimes stressful but mostly insanely busy month that has been.  This has truly been the first time and the first chance I have had to sit down and write.

It feels like Owen has had zillions of appointments this month.

  • Physiotherapy and Occupational Therapy has been stepped up to a block of weekly  intensive sessions for a month.
  • Opportunity Class has now become twice weekly.
  • Owen has had a initial community paediatrician appointment.
  • Owens equipment has arrived and a rep from the company has visited to fine tune it.
  • Owen has been assessed for further equipment, which will be again mainly positional. A squiggles set with is a padded support system with lots of Velcro, cushions, wedges. foam tubes to help Owen get in and maintain healthy positions  during floor time.
  • Owen is being assessed for a sleep system again to help maintain healthy positions while sleeping.

All that while doing all Owens normal routine of massages, stretches and play therapy. Don’t get me wrong, I am not complaining.
I will go into more detail of a few of the above as and when I can, bear with me on this one.

Also the rest of the family have kept me very busy.
Bethany has been looking around all of the local secondary schools as we are in the process of applying. This has been very stressful. Bethany particularly has been feeling the pressure.

Work has been particularly busy and stressful for Alex during the past month.

On a lighter note I have also been busy planning Lillys’ 6th birthday and her birthday party this coming Sunday.

So as you can imagine, yes I have been very busy… so I apologize for my absent and will try harder to keep this blog updated.

Thank you for your patience.

xxxx

Saturday, 14 September 2013

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”

Friday, 13 September 2013

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 1st Birthday and as how as part of their 1st 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 wasnt 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.

Thursday, 15 August 2013

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

Friday, 9 August 2013

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

Wednesday, 7 August 2013

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”

Friday, 2 August 2013

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.

Born at 28 weeks!!!

Another blog entry looking back.. this one details the moments before and immediately after when they were born.

Not 2 minutes after the girls and my mum left I was wheeled upstairs. Alex got whisked off to change into scrubs still not knowing if was actually going to allowed in yet and then I got wheeled into the theatre. The anesthesiologist checked if we had enough time for me to have a spinal block, not everybody was ready yet so he said we did. I was please the thought of being put to sleep scared me, I really wanted to see my babies born and mostly \\i was pleased that Alex would be able to be there.
The giving me the spinal block was suprisinly painless. I then was prepped for theatre, as this was going on I can remember was the endless stream of people pouring in all busy making there own preparations. I remember looking over to my right and saw two respriators marked twin 1 and twin 2 suddenly it hit in a matter of moments my babies were going to be born.

Considering the amount of people in the room and the urgency of the situation the atmosphere remain calm and relaxed throughout. I remember talking to the anestheiologist and his assistant about our girls and the baby names we had chosen.  I remember hearing others chat about the Olympics tonight was the night of the opening ceremony some had sky plus it and the anestheiologist had volunteered to help as part of the medical team. as they chatted I felt a lot of tugging and pulling and I was dreading what was going to happen next I was so scared.

at 18.49 on the 27th july twin 1 was born, what happened next astounded me I heard a cry, a proper new baby cry. I never thought a baby born at 28 weeks would come out crying. No sooner as I was getting my head around the sound of crying at 18.50 twin 2 was born and then I heard another cry a tiny bit of relief came over me they were both out and both alive. thet were taken over to the resprators immediately after birth not even time for a quick snatched look ove rthe sheeting. alex look over and I told him to go and see them. he took his camera

The next thing was the neonatal team were wheeling the babies out and across to the the neonatal unit. With each baby before they left the room they wheeled by me , paused just at my bed side giving me a quick first glimpse of my babies then quickly sped off again. each time they stopped I was even more surprised that each baby had there eyes open. I looked deep inside there eyes and before I knew it they were gone.

Sunday, 16 June 2013

Happy Father’s day

Happy Fathers Day xxxx

Saturday, 15 June 2013

Greased Lightning

This Blog entry follows the previous one of looking back at my Doppler scan.
It looks back to the events which unfolded before the birth of my beautiful twins.

I decided to go to the day assessment unit on my own to be monitored as I knew there would be a lot of waiting around and not a very fun way for the girls during there summer holidays.  Although he hospital is only a 5 minute walk away Alex insisted he would drive me as it was a hot day. Armed with my kindle and a large bottle of water I sat down and waited to be seen.

I was popped onto a bed and hooked up to the CTG monitor. It was hard to get a good trace as both twins were moving around a lot. eventually they settled down enough for the male midwife to leave me and said he would return in a while to check on me.  On his return he looked at the trace and told me twin one showed a dip and he wanted to get the Doctor to come down and take a look at it.
I sat  back in the waiting area of the day unit. I waited for ages for a doctor to come down and see me. I watched the whole of the Grease movie on the television which was playing in the waiting area. it was all very surreal to me.

The doctor came in just as the end credits rolled, he sat at a desk and read my notes. He finally came over. The Doctor told me he wanted me to go upstairs to the Antenatal Ward for further monitoring. I then knew I wasn’t coming home that day.

The lovely male midwife walked me up to the Antenatal unit. In the lift we met one of his colleagues, who was about to start her shift, they exchanged hellos and all three of us were talking about me expecting twins and the names I had chosen.

When up on the Antenatal ward they found me a bed and said they were going to monitor me again. I quickly phoned Alex, told him what was going on and asked if he and the girls could pop up and bring me along some socks as my feet were very cold.

They put me back on the CTG monitor where one poor student midwife had to sit there holding the probes to my belly, as because the babies wee constantly moving again they could not get a good trace.
Again there were a couple of dips and the paper printout was whisked away.

Lunch was then given to be, as I hadn’t eaten. As I finished eating my cheese sandwich Alex and the girls arrived.. with my socks!! We sat there chatting till a different Doctor came in and told us they needed to deliver the babies today, When? As soon as they all were ready for me!!

I couldn’t stop to think, I was given a hospital gown and teds to change into. Alex stepped out and frantically called my mums work and asked her to come as soon as she could to collect the girls from the hospital. The anesthesiologist came to my bedside to talk to me about either having a spinal block if there was time or I may have to have a general anaesthetic. he explained both to me. Another doctor then came and explained all about having a C-section and the risks involved. I then had to sign a consent form. Thirdly a paediatrician from neonatal came down to explain what was likely to happen with he babies when they were born. It was all very scary and very fast.

I wanted to finalise what we were calling the babies, Bethany helped make the final decisions of middle names. I wrote the names down on a piece of paper and told Alex to put it in his pocket. I said it was his job to tell them what there names were. I didn’t want my babies up in special care alone and nameless.
A nurse came in next and told me off for not yet putting on my gown and teds.  My mum still wasn’t here to collect the girls I started panicking so Alex said he would call her again, but as he stepped out into the corridor he saw he walking down. We all got emotional as we said our goodbyes I couldn’t hold it in anymore.
I was so so frightened. it was all too soon.

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