Progress

Selfie

 I take Owen and Florence to Opportunity Class three days a week now, which is great.

Opportunity Class is now known as " Early years special development team" doesn't really roll off your tongue does it .? So  I will continue to call it "Opps Class"

This week we made fruit smoothies.. which included touching, tasting and chopping fruit.  Florence was in her element.. Florence loves to eat. Owen enjoyed feeling the fruit and even ate some kiwi!!

We also had fun making valentines cards. Owen gave his to his big sisters and Florence gaves hers to Daddy.

The speech therapist came to Opps class but unfortunately didn't get eound to seeing us so will have to try and get a home appointment. I was keen to see her as Owen has been a lot more vocal recently and I want some advice on the next steps.

Valentines Card 

Wednesday afternoon I had a text confirming our Community paediatricians consultant appointment for Friday.  This was a surprise as I hadn't made one.

So braving the rain again on friday we went off to the appointment.
It went pretty well.

Owen was remarkably alert and smiling away during the whole appointment.  Owen made great eye contact throughout.
 She noted how much his high tone has improved since the last appointment last October his legs were then always so stiff as a board with toes pointing downwards, his arms were the same with his hands tightly fisted. It was very hard to move his limbs and dressing was tricky... it still is to be honest.
The consultant was particularly pleased with his hands, as they were more relaxed and not always as tightly fisted as they had previously been. His thumbs are still constantly tucked into the palm of his hands though so we will continue to get Owen to wear his hand splints and massage and work on his hands.

The consultant checked his spine and its lovely and straight.

As we already knew his hip x ray came back normal. Owen will have to have a hip
x ray at least once a year.

She was very impressed that Owen got through having bronchitis and a recent cold without a hospital admittance considering his history... touch wood it stays that way.
Even though he still has a cough and sounds very stuffed up his chest was clear. But we are still to be on tender hooks as any sign of him becoming chesty we are to seek medical help sooner rather than later... so again touch wood as winter hasn't finished with us yet.

Owens sight is still a concern, but we will no more next month when we get the results of Owens recent tests. That I have to say is scarying the @#$* out of me. As I know they won't come back all positive. .. but too what the negative is.. I honestly do not know?

One cause for concern that was flagged up was when I was explaining my worries about Owens sight, I explained that sometimes Owen seems to have moments of blankness. Where he just stares into space. The consultant warned me to keep an eye on these as if they increase it may indicate that Owen is having absent seizures.. (something I have googled.. but the staring can also relate to CVI  which is to do with his sight and brain messages being jumbled.. which also after googling previously if one of the things I think the eye test may show)

Overall Owen showed improvement and no new immediate action needs to be taken, just more of the same.  Keep working hard with the Physiotherapists and Occupational therapists. Continue working hard at home. Keep up with the Early years intervention. Continue using all the equipment at home.  We both agreed that all of the above has helped Owen tremendously.
So basically we are doing everything that is possible... so just keep going.

Owen playing drums in his Jenx bee special needs chair

Too much hard work... Zzzzz

Every Picture Tells a Story

Here's a picture

Here's the story

This picture captures the first time I was able to hold and cuddle Florence. It was taken on the 3rd August 2012 a full week after the twins were born. Before then it would be hard to imagine not being able to hold your own baby for so long after birth. Let me tell you it hurt.

Still when I look at this picture it hurts.

I look into my (make up free due to crying) pained eyes and look at my almost absent smile and remember my mixed emotions of that very moment.

I am right back in NICU. I can hear the beeping and sound of alarms. The sounds used to follow me home and haunt me in my dreams.

Looking down at my tiny tiny Florence, So small I could hardly feel her on me, just a warmth against my skin amongst  the many wires, tubes, CPAP equipment and heavy IV lines. What was supposed to be a magical moment was tainted with feelings of fear... "what if Im hurting her?" Fears for what may come next or what may not?

I remember also having feelings of guilt. Owen was very poorly at the time of this picture. Owen was on a ventilator (for the first time but not the last). Owen was far away from being able to cuddle. Owen associated touch with pain.. with procedures he had to endure on a daily basis.. we were only just starting to build up to being able to touch him.. to comfort hold him (placing a steady hand on him) we had times when holding Owen seem an impossible dream.

Now don't get me wrong... holding Florence was a moment of joy.. a moment to celebrate... a moment to mother. I became to live for those cuddles. I craved them. I needed them sometimes more then Florence needed them. I have spoke about Florence being my ray of hope during the darkest days. I would hold her and feel the hope. I could then past this onto Owen.

Mainly when I look at this picture I feel that in  some ways it summaries our NICU journey, well the emotionality of It anyway. Its a journey where you can both feel Joy and Sadness, Be fearful but brave, feel despair but remain hopeful all at the very same moment. 

Every picture really can tell a story.

A day of Trains & Tests

Today Alex, myself and the twins took a train ride to London, As today was Owens appointment to attend the Eye Clinic at Great Ormond Street to have his Electrobe Diagnosis Eye Test.

We had a bit of a wait as the clinic was running over (aren't they always) but a little over a hour after our appointment time we were seen by Consultant Mr Liasis and his team. Alex tried to keep Florence occupied as I sat in a chair holding Owen facing a plasma tv screen. Little electrobes were then fixed to different positions over his head and later also under his eyes. (The Electrobes are just like ones used for a ECG)
We were then played a childrens dvd.. this one was a Maktron Singing and signing dvd about the farm... Owen seem to enjoy it.
At various intervals the dvd was interrupted with different images and patterns... mainly black and white chequerboard flashing squares alternating with a grey background. The dvd was then breifly played back on the screen... this went on for a while.
Then a big light was repeatedly flashed close to Owens face covering his left and then his right eye.

While the test was going on Alex said from where he was seating he could see one of Mr Liasis team computer screen  which was showing lots and lots of graphs. She was also making notes as the test went on.. though Alex said all he could see was her writing mainly numbers. Alex also said a camera was fliming Owen as the test was in progress.

We haven't got any results from today, As all the graphs and results need to be carefully anaysled. This can take days or weeks. The results will then be sent to Owens consultant at Watford General who will discuss and talk us through all the findings. Unfortunately this isn't till March.

Strangly Owen seemed to enjoy the day out. He loved the train from Watford Junction to Euston. Owen seemed to get real excited as we went through a tunnel or as a train sped past our train.

Shaky blurred pic taken on a very wobbly train... as you can see the excitement was too much for Florence.

Owen even seem to mind the test Itself.. flirting with all the doctors.. showing off his gorgeous smile and his cheeky laugh.

After the test had finished we walked to Kings Cross Station  to feed the babies before we set off home. Owen seemed to relish the buzz of the station and was on top form. 

 

Despite being rush hour the train journey was pretty easy as we got the fast train back. I even managed to get a seat, which was useful as Owen was qutie rightly fed up and needed a cuddle.

Best Wishes for the New Year!!!

We are now a few days into the new year and already my calender is filling up fast.

Firstly I want to wish every a very Happy New Year!!!!

Pictures of our New Years eve

I am not usually one for setting myself New Years resolutions although last year I did set myself one. It was too become a little more selfish.. remember I can say no.. and do not feel guilty about saying no.. you can't keep everyone happy all the time.. put yourself and your family first.
I think I am on my way to achieving this.

In the same spirit I have been thinking of new ones I could set.
Maybe to accept help or feel less guilty about accepting help when offered.
I definitely need to find myself some "me time" or take up something I enjoy or even finding time to escape with a book.
On the same theme maybe finding time to spend with Alex on a (very) occasional date night .. any offers of babysitters?? (Also wld help achieve point one ;-)

Im looking forward in a positive way to find more & more ways to help & support Owen to achieve even more of his milestones and inchstones. To look forward to all the suprises he will no doubt bring :-) my lil warrior! !!

I look forward to Florence continuing to flourish into a little girl and hope she maintains her fierce determination and independence.

Beth has a big year ahead. Last year in primary school with SATS on the way. Finding out what secondary school she will go to. Then starting that school in September.  Its a very scary time and I will continue to support her through the tantrums and tears as she muddles through tweenager years. I know my kind caring... cheeky and humouress girl will make me proud.

She is also the best big sister anyone could ever want xxx


Lilly will no doubt continue to relish school. My quirky funny happy girl will no doubt continue to get me in trouble with her out spokeness.

Then there is us... I think Me and Alex really really hope we can finally move into a bigger house this year. Our house is literally bursting at the seams.


What ever life brings this year.. we know that as a family we can deal with it.
We know this year will be full of tears and laughter.

Best wishes to you all.

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.

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 

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.