The Six Days of Isaac. Day 5 - Goodbye

My dearest Isaac,

I’ve always been terrible at saying goodbyes, but to say goodbye to you was the hardest thing I have ever had to do.  Everyone says that losing a child is the most tragic thing anyone will ever have to bear.  I can absolutely confirm that to be true.  I have never felt such a sense of fear, panic and utter heartbreak.  Nothing on this earth will ever seem so difficult or hard to cope with again.  I just wasn’t ready.  I loved you too much.  I couldn’t imagine life without you.  My life has changed to something I no longer understand and it started with saying good bye on Wednesday 1^st August 2012.

You had a very difficult night on Tuesday.  We knew that you didn’t have long left with us, but we never imagined it would be so soon.  You were tired, so very tired.  We couldn’t let you suffer anymore and it was clear that you were.  Yet, we couldn’t let you go and Wednesday morning saw us back in the parents’ room trying to convince Dr Groves to find a way to keep you going.  Yet again, the poor man was put in a no win situation.  He said he couldn’t let you suffer, and you were starting to.  Ultimately it was his decision when to take your life support away, but he needed us to understand that it would be today.  He spoke in such a way that we couldn’t ignore the situation any longer.  How could we let you suffer anymore my darling boy?  You were so tiny that the pain you were in must have been unimaginable.  We didn’t want that, we couldn’t cope knowing you were hurting.  We resigned ourselves to what we were being told and a plan was put in to place that would allow us to spend as much time with you as possible before you were to leave us that afternoon.

Our family had time with you Wednesday morning.  The staff we’re amazing, and again gave us privacy by putting a screen up.  Sister Sarah was looking after you that day, and her strength gave us the strength to keep going.  The chaplain came to see you too and read Noah’s Ark to you.  You would be going on a journey soon, like Noah, and we hoped that you would understand it wasn’t the end.  We would follow you on your journey one day.  After everyone else had said goodbye, you, Daddy and I spent the afternoon together.  I spent most of that time kissing you, holding your hand, stoking every part of your body I could.  I wanted to memorise how soft your skin felt.  I had to remember, as I knew I wouldn’t be able to do this ever again.  I told stories about all our friends and family, shared my secrets with you, and whispered I love you so many times I lost count.  Daddy did the same.  He soaked up every second and imprinted all those memories to mind.  He looked so lost and broken.  I wanted to tell your Daddy it would be okay.  You were ready. You needed to rest.  I said these things with as much courage as I could muster.  Although I knew they were true, I had to force those words out of my mouth and say them with some sense of conviction.  I knew that you had many people who we love to look after you in heaven.  You Granddad Colin would be with you, your Great Granny Winnie would be making you laugh in no time, and my good friend Rachel would look after you and teach you all the thing I would have liked to.  Yes, I knew you would be looked after, but how could I reassure Daddy that we would be okay?  I knew we wouldn’t be, but I couldn’t bear seeing him look so destroyed.  I just said it because I had to.

Then it was Daddy’s turn to comfort me and to give me the strength to say goodbye.  We were taken to a side room with you.  30 minutes to say a final goodbye to you.  No, I couldn’t do it.  I panicked and begged Daddy to just let us grab you and run.  Run away far from here and not look back.  Take you away so this didn’t need to happen.  I was desperate.  Daddy somehow showed such courage and strength, and explained the reality of what would happen to you if we did just leave with you.  You would be in pain and suffer.  I couldn’t hurt you my darling boy and so calmed down.  Only you and your Daddy could have given me the strength to go on.

What happened next I can’t write about, Isaac.  You know already anyway. You know we had some special, private time together.   I think about it every day, sometimes with anger that it had to happen, sometimes with sadness, but always with love.

Then you were gone. 

We sat in that room for a long time.  I could have sat there forever.

Over the last year, I’ve realised it wasn’t really goodbye.  I see you every day in simple things.  Your windmill spinning in your garden.  A butterfly.  A rainbow.  There are a lot of little things that I think of as being signs that you are still with us.  You will always be with us, and we with you.  One day the three of us will be together again.  This isn’t really goodbye.

Until then.

Love always,
Mummy.

 

 

The Six Days of Isaac - Day 4. St.Thomas’Hospital

Dearest Isaac,

You were born on the opening day of the 2012 London Olympics.  It was a day the whole country was looking forward to, and there were events taking place to commemorate the Olympics up and down the country.  As you can imagine, the excitement in London had hit fever pitch, and even the Houses of Parliament opposite my room at St.Thomas’ was getting involved in the action!  Before I could get in to the Neonatal unit I was taken to a side room in the Post Natal ward for observations and medication.  Because of the circumstances they had given me a private room so Darren could stay with me.  The room put most hotels to shame, and the view I had was of the Houses of Parliament was stunning.  Every hour, on the hour, Big Ben sounded his chimes and we were treated to a special Olympic history story and light show, which was projected on to the facade of Parliament.  Your strength and determination during your time at St.Thomas’ was inspirational, and just as great as the job our Olympians were doing.  Although I was only ever in my room for my obs and medication, the light show would always seem to be on during those visits back.  I remember thinking how I wish I could show you the pretty lights.  You may not have understood what it was about, but it was a moment in history that you were a part of. 

Once I had had my checks done it was 1am.  I went straight to NICU to be with you, but not before I was pushed down in to a wheelchair and told to come back soon to get some rest.  There was no rest that week. Our only thought was to be with you, and NICU became my home too for the next four days.

The process to just get in to the Neonatal Unit was immense.  Scrubbing up, putting on hand gel, hanging up coats and bags, putting away any food and drink, lockers...  It seemed to take forever just to get past this check point, but it was reassuring to know the hospital took all these precautions for their little patients.  Once through we went straight to NICU.  I can’t lie Isaac, when I first saw you in your little cot I was shocked.  You were hooked up to what seemed like hundreds of machines.  There were wires everyway and lots of beeping.  And you had your ‘spacesuit’ on.  I could barely see you.  I literally lost my breath, and felt a real sense of panic and loss.  Daddy led me to the edge of your cot, and I felt the panic increase.  I was scared to move any closer, but Daddy took my hand and explained that there was a chance you could still hear us and I needed to talk to you.  If there was anyone’s voice you would recognise, it would be mine.  I was scared of your sweetie.  I was scared to touch you, to speak to you, to even cry.  I felt that I had no right to be there.  Look what I had done!  The guilt was overwhelming and despite having being told time are time that I wasn’t to blame, that I had done nothing to cause this, it didn’t and still doesn’t take away the fact that it was my body that let you down.  Your Daddy wasn’t having any of it though, and made it clear that this wasn’t a time for self pity – I needed to be your mum.  He was right, and hearing those words snapped me out of the anxiety and fear.  I held your hand and whispered that I was here.

And so began our new relationship.  I was not the Mummy I ever expected to be, but I was a Mummy.  If love was enough to save you, you would still be here now. I was unprepared for the feelings of protectiveness and obsessive love I felt for you.  I refused to leave your side and had to be reminded on many occasions to go back to the postnatal room for my meds and obs.  The midwives were fantastic though.  There were no lectures once they learnt the seriousness of your condition and they would wait to see me when I felt it was okay to leave you for a few minutes.

Our time together that first day was so very special. I could hold your hand and feel you squeeze it.  I tickled your feet and watched them wriggle around.  The doctors would tell us it was just a reflex action, but I believed it was more than that. I would stroke your chest and tell you you were ‘a good boy’ when you would fit from time to time. Whether it was a coincidence or not, you always stopped once I did that and as far as I was concerned you knew your Mummy and Daddy were there.  Your Auntie Janeen bought you some books that day, and we read each one to you from cover to cover.  Your favourite story was ‘Guess how much I love you?’.  We kept all your books at the bottom of the cot.  In also went the little toy rabbit we had bought you and the receiving blanket that I would have wrapped you in the first few moments after you were born.  It couldn’t be used in the way it was intended to be used, but you could still have it in your cot now.

That Sunday I met your nurse, Debbie.  She was in charge of looking after you those first few days I was there.  We got to know one another quite well over those two days. I would sit on one side of your cot, Daddy on the other, with Debbie at the helm!  Nothing was too difficult for this wonderful nurse, and she did everything in her power to make sure we were all comfortable in this most uncomfortable of environments.  She would talk to us about you, how beautiful you were, how well behaved you were being!  You never caused her any problems!  Debbie taught us to read the machines and reassured us that you weren’t in any pain.  We chatted about the most mundane stuff I’m sure, but Debbie never let on that she was bored!  It was the opposite, she showed that she cared by talking to us about you, checking on how we were doing, letting us do little things for you like putting Vaseline on your dry lips and washing you down with cotton wool.  I remember thinking I had been taught to do this in NCT classes, but it didn’t seem so complicated then.   There were no wires to hold up or negotiate in those lessons!  We were given the opportunity to hold you.  It took literally two nurses about 20 minutes to get you out of the cot, making sure the wires were still in place before placing you on my lap on top of a pillow!  It was so worth it just to be closer to you though.  My heart broke that I couldn’t cuddle my baby like everyone else.  We also met with one of your doctor that first day – Dr Tan.  We were taking in to the ‘parents’ room’.  We later learnt it was the one place you really didn’t want to have to go in to, as ultimately it meant bad news.  We were told again that you were very poorly but they didn’t know the extent of the brain damage you had.  They wouldn’t know until you had the brain cooling suit removed on Monday evening and they could perform a MIR scan on you on Tuesday.  She told us to prepare ourselves for bad news.  At the time, I remember thinking how much I despised this woman who seemed to have no faith in you!  You had survived after all you had gone through at birth, and there was no reason to ‘prepare’ myself for anything!  Looking back, Dr Tan was so very gentle and kind. She handled the whole situation as well as anyone could.  What a terrible part of their job that must be! My anger was just pure denial.  But I hadn’t even spent 24 hours with you; you were going nowhere!

Sunday night I met Maria.  She was your night nurse.  A sweeter woman you would be hard fixed to meet.  I left you for about 10 minutes to have my meds, and when I had got back she had ‘tidied up’ and ‘decorated’ your cot with all the little things we had placed around you.  Your receiving blanket was placed on top of you, and you arm was draped around your cuddly rabbit.  It was such a cute picture!  Maria said it was important for you to have to all your things close by.  She talked to you a lot, and kept telling you to be a strong little boy for your Mummy and Daddy.  You clearly listened to her and had a good night.  Your blood pressure was strong.  Your fitting was minimal, and you seemed to be in no pain. Whilst you slept, Maria showed me how to change your nappy, not that it needed changing, you weren’t allowed any milk so it was completely dry.  However, you have no idea how much I cherish that memory.  I thought it was something I would hate doing a few months before you were born, but it made me feel like a real mummy.  I could ‘do’ something for you apart from just talking to you and holding your hand.  Daddy was too nervous so he left me to do it.  Your Daddy did eventually change your nappy the next night, and Maria and I joked that he was a typical man, all fingers and thumbs!

Monday was a special day.  We decided to have you christened.  It was something we didn’t dream of doing so soon, but as much as we didn’t want to admit it, we knew it had to be done sooner rather than later.  Your two grandmothers and your great aunt were there, as was your Uncle Lee, Uncle Adrian and Auntie Janeen, all three of whom had agreed to be Godparents.  The staff gave us some privacy from the rest of the NICU room and placed a screen around us.  The Chaplin was very kind and it was a quiet ceremony, but one that was full of inspirational and healing words.  She hadn’t given up on you, and asked that God look after you and keep you safe as holy water was used to christen you Isaac Colin Smith. ‘Colin’ was in memory of your beloved grandfather who couldn’t be with you then, but who is with you now.  It was peaceful and full of love.  Every person present loved you so very much, and none of them were willing to let you go yet.  Debbie was not just a nurse that day, but also the official photographer!  She even used the office printer (don’t tell anyone!) to print off a few copies of the photos!  That day I had such mixed emotions.  I was angry with God for putting you through this, but at the same time I was begging him to let you live.  I was trying to make deals with him.  I would do anything to save you, even give up my life.  A few days later, I realised God wasn’t going to play ball.

Monday afternoon greeted us with more challenges.  We were summoned to the parents’ room, and with heavy hearts we entered it for the second time.  This time we met the doctor who would be in charge of your care for the next three days, Dr Alan Groves.  The first thing that struck me was that this man had a real sense of empathy.  He was truly devastated that this cruel thing had happen to you Isaac, to us.  He spoke gently and carefully as he explained in more detail that although you were strong, and your heart and organs were healthy, the brain damage means that they may not be able to function so well as the days went on.  Your brain cooling suit was due to be removed soon, and we should prepare ourselves for the fact that your health may deteriorate.  He handled our endless questions with compassion and he confirmed what Dr Tan thought, that there may be very little they could do for you.  We would have to wait until Tuesday for anything to be confirmed though.

As the day turned to evening, we held our breath as they removed the brain cooling suit.  If things were going to get worse, this is when it was expected.  We spent the night in vigil by your cot.  I tried to make more deals with God.  I made Daddy tell me the actual story of your birth as I couldn’t remember much of it.  For the first time, I was able to see your hair properly.  You no longer had your ‘space cap’ on and I marvelled at your blond curls.  How was it possible that we had created such a beautiful boy?  I felt a sudden sense of panic again that no one apart from us would see how beautiful you were.  It was probably the first time that I allowed myself to imagine you not being here.  Refusing to cry in front of you, I went back to my room to have my obs done.  I didn’t openly cry until I was able to stare at the lit up view of Big Ben.  How cruel that you may never see this view yourself!  How cruel it was that you may never hear those chimes that once just reminded me of the time, but now had a sinister soul to them.  The Olympic light show appeared on the Houses of Parliament again, and as I watched the images of the athletes, I know you were just as, if not more, determined to fight than they were.   Composed, and back on ‘Mummy form’, I rejoined you and Daddy.  We read to you some more, held your hand, watched the machines and prayed within an inch of our life that you would still have yours by Tuesday morning.

And you did.  You were so very strong my darling boy.  Despite the fits becoming a bit worse, your heart carried on strongly and we felt a sense of real hope for the first time.  Daddy and I were so very proud of you.  You were so very strong and determined to spend time with us.  I remember whispering to you that you were going to prove everyone wrong in the MRI today.  You would show them!  Daddy and I watched and willed you to be strong as they took you down for the scan.  Daddy and I then went downstairs to the hospital cafe and planned what our next steps would be.  I was going to give up work and become your full time career.  We would all move to South London to be close to the hospital as we knew you would probably be in here for a while. You should know Isaac, that as a North London girl born and breed, that was no easy decision! Daddy would take a job in central London so he could be closer to our new home in South London.  We had so many plans, all very different from the ordinary kind you make when you’re pregnant, but they were plans that included you being here and that’s all that mattered.

You came back from the scan a lot later than we thought.  Whilst we waited for the results, we were able to hold and cuddle you more.  Daddy sung to you.  It was the song he had sung to me on his guitar when we first started seeing each other - James Taylor’s ‘You’ve got a friend’.  Daddy cried as he sung the words with more feeing than I have heard anyone sing.  I can’t sing sweetie.  I would have done, but I didn’t want to upset you or the other little patients so I thought it best we just talked!  And talk we did.  Well, I talked and you listened.  I know you could hear me though.  Those hand squeezes you gave made it clear to me that you could.  It’s the one thing I refuse to believe the doctors about.  Your hand squeezes weren’t reflex actions, they were you telling me you understood me, loved me and you were going to be okay.  I was, and still am so proud of my strong little boy.

Late Tuesday afternoon we were led to the parents’ room again.  In my mind it was just for your results, and as you had survived Monday night I was convinced all would be fine.  We knew you would have some brain damage, but as I said before, we had a plan.  The three of us would be okay.  But we weren’t going to were we?  Things hadn’t gone well.   Every part of your brain had been damaged.  You were not going to be with us much longer, and it was a matter of days we were told.  I sat there stunned as Daddy cried.  I couldn’t cry, I just didn’t know how to anymore.  The phrase, ‘it felt like a nightmare’ couldn’t be more apt.  I kept thinking ‘why us?’  What had we done that was so bad that we had to be punished in this way?  I thought we were good people.  I know we weren’t perfect, but we weren’t bad people!  I stared at your Daddy wondering how we were going to survive all of this ourselves?  I couldn’t protect you and now you were going to be taken from us.  I did the only thing I felt I had left.  I prayed.

And so the deal making with God continued as I sat watching you in your cot throughout Tuesday night. 

God obviously wanted you sooner than we expected though.  By Wednesday morning you had already deteriorated a great deal.  Your blood pressure was all over the place and your fitting was worse.  You were swollen and clearly so very tired.  It felt like you needed the MRI scan to happen so you could say ‘I’m tired Mummy and Daddy. I can’t go on anymore’.  I understand my darling.  I didn’t want to, but I did understand.  You had been so brave and strong, and had done everything in your power to make sure you spent some time with us, but now you were too tired to keep going.  Mummy and Daddy understood and still do understand.  You were our miracle boy in many ways, and still are.  Like those Olympians’ unfailing determination to do their best, you also showed sheer courage and strength, and have inspired so many to be strong and brave too.

Until tomorrow.

Love forever,

Mummy.  XxX

 

The Six Days of Isaac - Day 3. 27th July 2012

My darling boy,

So, here is the story of your birth. It's the one blog I've been dreading because it was a day of the most amazing highs, and the most terrifying lows.  It started out as a good day though.

I woke up early on Friday 27th July 2012. Your Daddy had taken the day off work and we were going for your last scan before you were due to be born a week later. We had planned to go out for lunch after to 'Giraffe' restaurant. They did a mean hot dog, which I had been craving all week! It's funny, as I remember thinking you hadn't moved very much that morning and I had a slight pain in my stomach. I presumed it was wind, one of the many delights of pregnancy!  I wasn't worried though. I knew in a few hours we were having a scan, and the day before I had a midwife appointment where we had listened to your perfect heartbeat together. I wasn't concerned in the slightest.

So, off to the hospital we went. The scan was fine, if a little uncomfortable. The pains were a little worse, but the sonographer said everything was fine. Daddy said that the next time we saw you, you would be in our arms. We didn't know then we'd be meeting you sooner than we thought.

We left the scan room and proceeded to walk through the anti natal area. Thoughts of the hot dog filled my mind!  I'm not greedy, honestly I'm not!  It's just that the last few years I had been surviving on 1000 calories a day just to keep my weight down whilst we were going through the IVF treatment. The novelty of eating 'normally' was one of things I enjoyed about being pregnant! Thoughts of that hot dog quickly evaporated in to nothing when I felt what I can only describe as a ‘gush’

I was convinced it was my waters breaking. I quickly hurried to the toilets in the hospital. Before I made it though there was another gush. I realised then it was blood. I knew this wasn't normal and went straight to the labour triage unit. By the time we got there my legs were covered in blood.  I was scared and my pulse confirmed that!  Even though my blood pressure was fine, my pulse was racing. The midwives hooked me to a fetal heart monitor, and Daddy and I knew something wasn't right.  Your heartbeat was much lower. I was seen by a doctor who suspected it was a Placenta Abruption. If only we knew what that was then!  If we knew what it was we would have demanded action sooner. However, no one seemed that concerned that I was bleeding so much. Actually, let’s be honest, I was haemorrhaging. But why should we panic if the experts weren't? 

However, there was a major reason to panic. As your heartbeat dropped it meant you were running out of oxygen. An hour later I was moved to the labour ward. The doctors explained that you needed to come today and that it wasn’t urgent enough to do a c-section so they tried to break my waters.  Now I wish I had walked myself to that operating theatre and demanded they do the c-section there and then.  But I didn’t. I didn’t realise that was what they should have done. The doctor’s sense of urgency was minimal and I was just annoyed about being in pain! This selfish thought is one that still haunts me today. However, a few seconds after they broke my waters all pandemonium broke loose.

I was thrust a consent form to sign for a c-section.  I was wheeled quickly to the theatre while Daddy chased behind.  My clothes were being ripped off me and I had no idea how things had so suddenly progressed to this!  Daddy was screaming ‘what’s happened?’, while I was trying to fight back the tears.  The answer we got was that your heartbeat had dramatically dropped and they must operate now!  I heard the anaesthetist ask if there was time to do a spinal block.  “No time” was the answer given by someone.  I was told I would be put under general and everything would be okay.  I heard Daddy ask if he could give me a kiss but they said no and threw him out.  Daddy understood why, but I had no idea at the time.  You had no heartbeat my darling.  They had left you for too long inside me.  1 hour and 50 minutes to be precise.  They had all that time to save you before it had come to this, but they didn’t.  The last thing I remember was my hand being held by a kindly male midwife, and then nothing.

When I woke up, I was hooked up to all sorts of machines.  I had a group of consultants around me crying.  Daddy wasn’t there and neither were you.  I was confused, in pain and completely terrified.  I asked where you were.  The looks on the faces of the consultants gave me my answer.  You were dead.  I was sure of it.  They didn’t say anything for what seemed like ages.  Again I asked, crying now.  Too scared to ask if you hadn’t survived, I asked where you were, again.  They explained I had had a Placenta Abruption.  You had been born still but were resuscitated.  They had given up trying to find a heartbeat after 19 minutes, and were going to ‘call it’ and did their final check.  They heard a very faint heartbeat at that point and then started work on you again, this time to keep it going.  They had taken you to NICU and Daddy was with you.  Stunned, I asked them what I had done wrong.  Why had this happened to you?  They tried to reassure me that I had done nothing and that ‘these things happen’.  These things happen?!  Why?  To us?  Why?!  No answer was given.  Then Daddy was by my side and I asked again what had happened.  Daddy was in tears but gently explained in some more detail that you were here, you were a boy, but you were very poorly. I can’t believe I didn’t even know you were a boy until then! You were unable to breath for yourself and had begun to fit due to abnormal brain activity.  You had suffered brain damage because of a lack of oxygen.  This had happened because the placenta, your oxygen and food supply, had come away from me while you were still inside.  I didn’t understand what that meant.  I made Daddy tell me that it meant you may not survive.  He looked crushed as he said those words.  My darling Isaac, I cannot even remember what I said in response.  I couldn’t tell you how I felt at that point.  The world just seemed to shatter and I was beside myself.  I wanted to see you straight away, but I was too poorly and in a high dependency unit.  Apparently I lost a lot of blood, and at one point blood wasn’t being pumped around my body properly and my blood pressure had gone in to crisis.  Daddy told me there were around 40 people in the theatre when they eventually let him in to see you.  There was a wall of doctors and nurses around me while they worked on me, and a wall around you while they tried to make your heartbeat stable.  I just couldn’t understand.  It seemed only minutes ago you were still inside me and I was being told everything would be fine!  Now we were here, in the darkest of places imaginable.  The Paediatrician came in and suggested I should be taken to see you ‘just in case’.  It would be easier to move me than Isaac.  I do remember crying “what does that mean?”, and I was told to “prepare myself for the worst”.  God forgive me, but at that point I didn’t want to go.  I couldn’t face seeing you if you weren’t going to live.  I couldn’t bear to let you see me - the woman who had done this terrible thing to you; the woman who is meant to be your mother but hadn’t taken care of you properly.  Daddy convinced me to go, and I was wheeled in to the NICU.  I wasn’t prepared for what I saw.

 Yes, you were fitting and were hooked up to more machines than I had ever thought humanly possible, but I saw past that easily.  There you were, my beautiful blond haired little boy.  You were perfect, tiny, and precious.  I couldn’t believe Daddy and I had made someone so very beautiful.  They let me touch your hand and your skin was softer than anything I had ever felt before.  I sat mesmerised but your sheer beauty, and fell in love with you right there and then.  Nothing was important apart from you now.  Nothing would ever be as important as you.  Darren asked if we should call you ‘Isaac’, the name we had decided on if you were a boy.  It seemed the right thing to do, and that was your name.  It couldn’t be anything else other than Isaac.  It suited you from the moment we decided on it – a strong name for our miracle boy.  Years ago, my close friend Rachel was expecting a baby.  We talked about names, and I said I liked the name Isaac.  I made her promise she wouldn’t use it.  It’s funny how that thought came in to my head at that moment, but I understand why now.  Rachel passed away a few years ago, and the thought of potentially loosing you made me think of how it felt to lose such a good friend at an untimely manner.  I prayed that you wouldn’t be meeting Rachel anytime soon.  Now you’re not with us, I take some comfort in knowing a good friend up above is taking care of you.  Still, at that point Isaac, I was refusing to believe you would be joining her.

They then made me leave you just a few minutes after seeing you for the first time, and I wasn’t sure if I would ever see you again.  I wouldn’t say a ‘proper goodbye’ though, as I was determined that we would meet again soon.  You were going to be transferred to St.Thomas’ NICU unit as they had a special treatment called ‘Brain Cooling’ which could help to minimise brain damage.  I convinced myself it would work and that in no time at all I could be a proper mum and make it up to you.  Daddy had to leave me and go with you.  I was so glad Daddy would be with you to make sure you were okay.  There is no other person I could have trusted to take care of you.  And then you were gone.  I was alone in my room, without you or Daddy.

What happened when you got to St.Thomas’ is unfortunately not something I can tell you, but I know from what Daddy said you were well taken care of.  They put you in to your brain cooling suit, which we nicknamed your ‘spacesuit’, and they make sure you were no longer in any pain and stabilised your fits.  Daddy rang me every hour to update me, and that was the first of many nights neither of us slept.  Even though I couldn’t be with you, and I knew Daddy was taking such good care of you and he promised me he would tell you all about your Mummy too.

I was due to be transferred to St.Thomas’ to join you, but the hospital made a number of mistakes which meant I couldn’t be with you till the early hours of Sunday morning.  After a multitude of arguments, and eventually threatening to discharge myself, bossy Mummy got her way and I was by your side as soon as I got there.

I may not be literally by your side right now, but I know one day I will be.  Until then, know you are the first thing I think about every morning and the last thing every night, not to mention all the minutes in between that!  You came in to this world in such a dramatic fashion, and certainly in a way that we never wanted to happen.  But not one moment would we ever change meeting you as that was the day I realised what it truly meant to love with every being of my body and soul.

Love always,
Mummy.  XxX

The Six Days of Isaac. Day 2 – We wanted you so much

Darling Isaac,

That I was allowed to be your Mummy was the most precious and amazing experience.  Your Daddy and I were so blessed to have you. We had tried for so long for you and we couldn't have been happier when we were told the news that we were expecting. You see, it wasn't an easy journey. We faced a number of obstacles to conceive and carry you.

I suffer from Rheumatoid Arthritis. I have done since I was a teenager. When we decided we wanted to become pregnant, I had to come off all my RA meds. It would be too much of a risk to try and have you whilst on them. The only drug that could safely control the RA whilst we tried to become pregnant was steroids. Not a particularly nice drug to take, but so worth it if it meant we got to be parents.  So, the struggle to keep the RA under control began, and as months became years we realised that we weren't going to be able to become pregnant naturally. The RA was becoming worse, and I couldn't be on steroids indefinitely for much longer. It seemed that IVF was the only way to help us become parents.

The gruelling treatment was tough but seemed to be going well. Unfortunately it didn't work in the end, and we were gutted. Our consultant was optimistic though and made a few changes to the meds. So, four months later we were back cycling. This time I was convinced it wasn't going to work. My disbelief and shock continued even when we got the news I was pregnant.   We had success!  All those years of sacrifice had been worth it. However, despite those closest to us celebrating, I couldn't believe it had happened until I saw you for the first time.

I couldn't bring myself to look at the ultrasound screen until I heard the sonographer say 'there it is!’  You were amazing.  At seven weeks we saw you. You looked like a tiny bean with a wiggly dark line pounding away. The sonographer explained that wiggly line was your heart beating. That was the moment I realised you were real. This was actually happening. We were going to be parents! I gripped the scan photo tightly as I left the room and I held it in my hands until your image was safely stuck up on our fridge door. It was the first of many.

As the months past I became increasingly scared that something would happen to you. I was still terrified that it might not work out. The terror prevented me from being excited and I felt like a bad mother for feeling that way. It seemed too good to be true that you were really here and we would meet you soon. I still couldn't look at the scan images on screen until the sonographer confirmed you were okay.  I was so superstitious. I didn't want to find out if you were a boy or girl. I couldn't bring myself to pick out clothes for you. The idea of a baby shower even stressed me out! I was terrified I'd jinx this miracle I had inside me. It made me feel down and I couldn't seem to make others understand why I wasn't excited. I couldn't understand. I was scared we weren't bonding.

But we did, on an intimate level. I sometimes secretly talked to you.  I would tell you everything was going to be okay; we would be okay. You shared your likes and dislikes with me. You weren't a big fan of chocolate, much to my annoyance, and your taste in music was questionable!  Rizzle Kicks only needed come on the radio and there you would be bopping around to their music in my belly. I didn't even know the name of the band until I realised you liked them and looked them up on iTunes!  I downloaded their music on to my iPhone. I would get strange looks from people wondering why a '30 something' woman was bopping away to Rizzle Kicks in her car! Even now I sometimes listen to them because it reminds me of you. It's our little thing. Strangely enough, yesterday on our way to our little birthday picnic at St.Thomas’, we were playing your songs in the car.  Half way through your Rizzle Kicks favourite one of the largest butterflies I had ever seen flew by my window for a good few seconds.  I knew you were listening and enjoying your song!

Your Daddy was taken with you from the first instance. He didn't let me lift a finger the minute he knew we were pregnant with you. I seriously did nothing for 9 months!  Housework became a thing of the past! He would speak to you every day; his head by my belly, his hand stroking it. I joked that the ‘cutesy’ voice he put on was actually quite sinister, but you never seemed to mind and responded to him by kicking me in the bladder, often!  What an amazing man your Daddy is!  If you could see him now, and I'm sure you can, you'd be proud of him. He is doing everything in his power to raise money for the Evelina Children's' Hospital in memory of you. You’re Daddy has become a long distance runner!  He ran the Virgin London Marathon for you in April! With every step he took, I know he was thinking of you.  Since then he’s managed to raise even more money for the Evelina, and his aim is to buy the neonatal unit an Isaac NICU cot.  He will get there as he is determined, like you.  You’re both so alike in that way.  Your Daddy fights as hard as he can to show how much respect he has for the fight you gave to spend time with us. If you were here, he would have spoilt you rotten and taken such good care of you – I just wish he had had that chance.  I know he would have been an amazing Daddy to you.  Just from the way he took care of us before you were born proved it.  He still misses those little chats he had with you and the way you kicked my belly as he spoke. We both do my darling boy.

You were wanted, so very much. 

Until tomorrow.

Love always,

Mummy.  XxX

The Six Days of Isaac. Day 1 - Happy 1st Birthday

Dear Isaac,

Today you are 1 year old.

Today I should have been helping you rip the paper off the many presents we would have spoilt you rotten with.

Today we should have been cuddling you tight and counting our blessings, except we’re not.

So, how did we get here? Why on earth am I writing this instead of doing all the above? These are questions I ask all the time, and since we lost you there have been so many 'whys’. I still don't understand why you had to die. I wonder what I did wrong to make this happen.  I wonder why the hospital didn't act sooner.  Maybe one day we’ll get some answers, but in the meantime I will keep questioning.  And in terms of why I’m here writing this? I never had the chance to tell you all the things a mother wants to say to her child. Over the next six days I will try to.

l wanted you to know how much we wanted you; how much we loved you.  I wanted to share stories about our family and friends with you. I would have told you all about the people they are and how they were so looking forward to meeting you. I can't ever have those conversations with you now, or see your reactions to these little anecdotes and stories.  I won't ever see you smile or hear your laugh. I can only imagine your responses. So 'here' is simply the place for me be your Mummy. It's a place where I shall try and be honest. It's a place to remember you. Because even though you're not here anymore, I still want to be your Mummy. We got ‘here’ because I love you Isaac, and I don't know how else to tell you.

My birthday present to you Isaac is this.  I am going to write to you every day for six days to mark the time we had together.  I will share with you all the things I would have done if you were here in person, and some things I would never have had to say if you hadn’t had to leave us.  I will start with something simple though:  happy 1^st birthday my darling son.  May you feel the enormity of the love we have for you from where you are.  This day means so many things, but the most important one being that you were given to us a year ago, and for that we are truly grateful.  You may have left us sooner than anyone could ever have imagined, but not one day goes by that we do not thank God for you.   

Until tomorrow.

Love always,
Mummy. XxX.

http://www.virginmoneygiving.com/runningforisaac

Flying with Isaac

First of all thank you very much for taking the time to read this. As some of you may know I lost my baby nephew, Isaac Colin Smith on the 1st August 2012. I am doing this skydive in memory of him, and to raise money for the Evelina’s Neonatal unit.  Throughout Isaac's short stay in the hospital they provided him with outstanding care and attention as well as supporting us, his family.

This is my story of why Isaac will always be part of my life.

For as long as I can remember I knew that my sister, Simone, would make a wonderful mum. As my older sister, we of course had arguments, but I knew that she would always protect and love me. When she married Darren I was so happy for them both, he is a kind and loving person and someone who I knew she would be able to fulfil her dreams with. Over the years Darren has proved many times over that he is an important part of our family, and someone who I can consider a brother. When they began trying for a baby I was incredibly excited and although they struggled I always knew it was going to happen, they were meant to be parents.

When Simone told me that she was pregnant back in December 2011 I was overjoyed! Over the next few months the excitement built, and I was unable to resist buying little things for him (although at that point we did not know the sex). I can remember talking to my friends who have children to ensure that I knew which toys would be the best for him and trying to gain as much knowledge as I could.  I wanted to be able to support my sister and be the best Auntie ever! My sister let me come to their 3d scan which was incredible.  To be honest at first I wasn't even sure what I was looking at (those who know me probably wouldn't be that surprised....) and then it hit me - we were going to have this gorgeous little baby in our lives, and life as we knew would completely change! I organised my sister’s baby shower, which was a wonderful day with her friends and grandmothers, all celebrating the coming of this precious and already loved baby.

On the 27th July 2012, life as I had come to know it changed. I was at work that day.  I knew that my sister and Darren were going to the hospital for their last scan and I was looking forward to hearing from them after. I received a call from Darren telling me that Simone had started bleeding after the scan.  He reassured me that she was okay and given that they were at the hospital things would be fine.  However, I couldn't stop worrying so decided to leave work and go to the hospital.  On my way I had several calls from Darren updating me about what was happening.   I remember thinking that it was going to be okay as they would deliver early and given that he was over 37 weeks that he would be fine.  The last phone call I got before getting to the hospital was from Darren in an extremely distressed state.  I couldn't make out what was happening apart from Simone was in surgery, fear and panic set in as I rushed to the hospital.

At the hospital I found Darren and my mum, both in floods of tears.  I was told that Simone was having an emergency c-section.  The state of Darren told me how serious and life threatening things were.  We waited for what seemed like eternity, and then Darren was taken off by one of the doctors.   He must have been gone for about 30 minutes but again it seemed like a lifetime.   We didn't know whether Simone or the baby had survived.   I can honestly say I have never been more terrified.   Eventually Darren returned with the doctor and they called us all in.  It was explained that Simone had lost a significant amount of blood but was out of danger.   The baby, however, had to be resuscitated for over 20 minutes.  Simone had a placenta abruption and due to this the baby had been without oxygen.  The paediatrician told us that he was in critical condition and was unlikely to survive.   The lack of oxygen meant that he had certainly experienced a high level of brain damage.   I remember feeling devastated and just wanting to make everything ok for him.   I was also extremely worried about my sister who was still under anaesthetic and didn't know what was happening.  I was so worried that she would not get to see her beautiful son.   The paediatrician also told us that they wanted to move him over to a hospital which could provide specialist care and that as soon as they had a place they would move him.

We were allowed to see him with Darren.   He was in an incubator and fitting profusely but it didn't take away how breathtakingly beautiful he was.   I never expected to feel such a bond with him, but as soon as saw him my heart melted and I knew I would do anything for him.  Quite simply I fell in love.

The next few hours were horrendous.  Simone was told what happened to her son, but thankfully she got to see him prior to them moving him to St Thomas'.  They also named him Isaac Colin Smith. Darren had left with Isaac, and my mum and I stayed with Simone. This was the longest night ever, with phone calls back and forth between Darren and Simone to keep her updated about Isaac and his treatment.   Watching my sister have to do this and not be able to be with Isaac broke my heart. We stayed up for the whole night, anxious to hear about Isaac.   When I think back I honestly do not know how my sister got through that night.   Thankfully Isaac continued to fight that night.

The next day my mum went home to get changed and I stayed with Simone and then we swapped over. It was thought that Simone would be at St Thomas' by early afternoon so I headed up to St Thomas' with my Aunt.   Before I went up, I knew that I wanted Isaac to have a book that Simone and Darren loved, so I bought a copy of 'Guess how much I love you'.  It was a message that I so badly wanted Isaac to know. When we arrived Darren was there with his mum and brother, both of which had driven up the previous night.

Darren and I went in to see Isaac.   He was every bit as beautiful as I remembered.   He was wearing his brain cooling suit and was hooked up to lots of machines.   Darren encouraged me to touch and talk to him and so I felt how soft his skin was, was able to touch his little feet and tell him how loved he was.   Over the course of the day I told him that his mummy was on her way, told him all about our family and willed him to keep fighting.   Being in his presence was amazing; this little boy had completely captured my heart.   Simone arrived on Saturday night, she still should have been recovering from the c-section and I could tell that she was in a lot of pain but she of course went straight to see her son.   The rest of the family left the hospital in the early hours of Sunday morning. Sleep of course completely evaded us as all anyone could think about was Isaac.

The next day was spent spending as much time with Isaac as we could.   Due to him being in the neo natal unit we were only allowed to go in two's, so I was generally with my brother and Darren's brother.   We talked to Isaac, read to him and also continued to stroke him little feet and hands.   I say little, but in reality Isaac was a tall baby, measuring 50 cm! His feet in particular were like my sisters, narrow and long, especially his toes!   At one point when we put our finger to his feet and hands, Isaac's toes and fingers would curl round in a grip.  It was an amazing feeling, and despite the doctors saying it was a reflex action I was sure that Isaac knew we were there.   Simone and Darren spoke to the consultants again and were told that it still wasn't looking good and that in reality he may only have a matter of days.   I just didn't believe them.   I remember being with Isaac and Darren's brother, the two of us watching his brain monitor and both believing they had got it wrong. Isaac had been a miracle from the start, he had survived so much already and as long as he was still fighting I knew we had to fight with him.

That night as we left the hospital, all we could was pray that Isaac would continue fighting and that God would look after him. I kept in touch with Simone via text and again sleep was never going to happen. The next day was a big day for Isaac, it was his baptism.   My brother, Darren's brother and I were all named as godparents, again I could not have been prouder.   I knew that I would always look after and love this wonderful little boy, and that it was an honour to be part of his life.   That day was also the day where Simone and Darren got to hold Isaac for the first time.   I was incredibly pleased for them.   That night was also when Isaac would have his brain cooling suit off. The doctors were not sure how Isaac would react, and we knew it was going to be touch and go as to whether he made it through the night.

I texted my sister early the next morning to see how Isaac was, she told me that surprisingly he had responded well!!   I told her to tell him how proud I was off him and that I would be up soon to see him.   When I heard that news I remember feeling like my heart was swelling I was that proud of him.   It was a feeling that I had never experienced before and it took me completely aback, but in the best possible way.

When we got to the hospital they had taken Isaac for an MRI scan, this was to see the level of brain damage he had experienced.   Results came back later that afternoon.   Simone and Darren told us that the doctors had said that the results had shown that all parts of Isaac's brain had been severely damaged.   They had stated that they did not expect Isaac to hold out for more than a couple of days.   Words cannot describe how I felt.  I couldn't believe what was happening and part of me still felt and hoped that the doctors had got it wrong.   We obviously spent as much time as we could with Isaac that day.   The rest of the family were also given time to hold Isaac.   Holding him was one of the best moments of my life.   I could have stayed like that for hours.

The next day we arrived at the hospital early in the morning. Simone and Darren took the whole family into one of those family rooms.   Simone broke the news to us that it was expected Isaac would pass away today.   He had been fighting so hard but ultimately this was wearing him out. Obviously no one wanted him to be in any pain or discomfort, but at the same time I desperately wanted the doctors to be wrong.   I don't think I will ever forget the look on my sister’s face when she broke the news. Simone and Darren had decided that the family would spend time with him in the morning and then they would have the afternoon together, their little family.

Given that they had so little time with Isaac I was, and still am, beyond grateful that I was given that time with him.   As I held him in my arms I knew this was going to be the last time.   I so wanted to scream that this wasn't right, wasn't fair, but all I could do was make that time precious and let Isaac know how much he meant to me, how much I loved him, that he would be forever in my heart and that I looked forward to seeing him again when that time comes.

Isaac died on the 1st August 2012 at 6.56pm in Simone’s arms.

The neonatal unit did everything in their power to make sure that Isaac’s time at St.Thomas’ was as comfortable as possible.  The support they gave, and continue to give Simone, Darren and the family can only be described as outstanding.  Nothing is too much for these nurses, doctors and counsellors.  We will never forget their compassion and care.  It is for this reason that I am taking on this challenge and hope that you will be able to spare a few pounds to support this amazing children’s hospital.

There is not one day where I do not think of Isaac. When I do this jump I am sure he will be with me, experiencing every second.  I love the thought that I am sharing this with him.

If you would like to sponsor me as I jump out of an aeroplane and plumit to earth - please visit the fundraising page http://www.virginmoneygiving.com/flyingwithisaac

 

 

The Story Of Isaac (one blog I'd like everyone to share)

So today, the 1st November, is three months to the day that Isaac died. He passed away on the 1st August 2012 at 6.56pm at the age of 5 days and 5 hours. In his short life it appears that he has had a massive impact on people and their lives. His memory has already resulted in a massive amount of money raised for the Evelina Children's Hospital, and hopefully by running the London Marathon in his honour and memory we will be able to raise a lot more money for the hospital and in doing so continue the amazing work being undertaken at this hospital in pioneering treatment to save seriously ill babies.

This blog entry, is to tell Isaac's story, the lead up to his birth, his life at North Middlesex and at St Thomas's. Some of what's in this blog, you may find hard to read, but I feel that I need to tell everyone as much as possible about Isaac's life through my eyes, to show the strength he showed us, to highlight the care he received. As a warning, this is an incredibly long blog, but please do have a read. I also need to say, that at present there are a number of investigations about to start at North Middlesex hospital surrounding the birth of Isaac. Therefore I want to say that what I'm writing here are my personal views. I'm sure reading this, you will have questions about why what happened happened, and hopefully in the coming months we will receive these answers as without them it is very very difficult for us to get closure. We know that Isaac can not be brought back, God I wish more than anything there was a way that he could, but we know that that is not possible. For us what is important now, is to find out whether anything needs to be changed so that other parents do not have to go through the incredible pain and suffering that we have gone through in losing Isaac.

This is the story of Isaac Colin Smith x

Isaac was conceived through a form of IVF at Homerton hospital in East London. It was the second course of IVF that we had been through, and I still remember early in December getting the phone call from the hospital that Simone was pregnant. After years of heartache and pain in us wanting a child, finally we were there, we were pregnant and the future that we had long hoped for could finally begin.

In the coming months, we prepared. We didn't tell many people as we didn't want to tempt fate. Because of the fact Isaac was conceived through IVF, medical history and Simone's Rheumatoid Arthritis, we were placed under Obstetrician care at North Middlesex Hospital and this meant that unlike most couples going through pregnancy we had LOTS of scans, every four weeks and as we got near to the date that Simone was going to be induced (so that the hospital could keep control of everything) these became every two weeks.

We'd spent lots of money at 'Baby Shows', read books, washed all of the baby clothes, set up a wardrobe with everything our baby would need, built drawers in our bedroom for all of our babies clothes (we had decided early on we were not going to find out the sex), put the flat up for sale as we knew a one bed flat would not be big enough, and even swapped Simone's car from her beloved Fiat 500 to a slightly larger car for our baby. We'd gone through a set of NCT classes and had met a lovely group of friends who we were excited to go through the final stages of pregnancy with and our futures with our new borns in the coming months. We were ready and as we passed 36 weeks we started to relax that all was going to be ok and excitement continued to build.

On 27th July 2012, we went along for our final scan. At 37 weeks plus 5 days we knew that our baby was basically at full term. Simone had been suffering a bit of pain that morning, but we believed it was just wind. The scan seemed to take longer than normal, we mentioned the pain Simone was in, but nothing seemed to be wrong. I still remember sat there, holding Simone's hand watching the scan screen and saying to her "just think, next time we see our baby we will be holding it in our arms". Little did we know what was about to happen.

As we walked out of the scan room, Simone suddenly stopped and said, somethings just happened. She thought her waters had broken, so we rushed to the nearest toilets so she could check what was going on. As we were getting there, she felt another gush and was quite certain what was going on. But as she emerged from the toilets and said to me, its blood, we knew something wasn't right so headed straight back to the maternity triage centre. Although we knew blood wasn't a good sign, we'd just had a scan, we knew our baby was ok - everything was going to be fine.

In the triage centre Simone continued to bleed, she was asked to go and take a urine sample - when she came back it was just blood, she'd had to get the cleaners to the toilets as she had bled all over the floor, our concern levels were increasing, but everyone else seemed to think there wasn't an issue. Isaac's heart beat was being monitored - we commented it was significantly lower than we had ever seen before (125ish instead of the normal 150s), but there was no real concern it appeared. A doctor assessed Simone and there was mention of a potential partial placenta abruption (we didn't know what this was at all), but as the scan had been clear, there still didn't seem significant concern. An hour after arriving in triage we were moved to the maternity ward for further assessment and monitoring.

Our babies heartbeat continued to seem to slowly reduce, and our concern levels were increasing. Another doctor assessed Simone and broke her waters - there was no going back now, our baby was going to be delivered today. From this moment, everything became a blur and happened so quickly. The waters had been clear, but Isaac's heartbeat started to become more difficult to monitor very quickly. The decision was made to do an emergency C-Section and roughly an hour and an half after arriving in triage we were taken down to theatre. It was at this moment we knew things were going very wrong.

I will never ever forget the look of the obstetrician that was in the theatre. She hooked up an ultrasound, and the look on her face showed me all I needed to know - hearing her say there's no heartbeat, sent a horrible shiver down my spine, we were told that they were going to need to do an emergency general anaesthetic C-Section and I was taken out of the room by a nurse. I didn't even get to kiss Simone to wish her good luck, all hell had broken out in front of us, and as I was taken out of the room and put in a side room on my own, it felt like my world was falling apart. Minutes later I heard sirens going off and people running past the room I was put in, I looked out, but couldn't see anything, I just knew that those sirens were crash sirens, and felt so helpless. Soon Simone's Mum and sister turned up, and I phoned my Mum to update her, and we all sat and held our breath.

What seemed like an eternity later the paediatrician on duty came to see me and took me away. He explained what had happened. I was a father, and my wife was stable, but my son was very ill. He had not had a heartbeat when he was born at 1.26pm. They tried to resuscitate for 18 minutes, and in the final checks after deciding to stop resuscitation, they found a feint heartbeat. He almost sounded apologetic, and then I found out why - Isaac had suffered potentially significant brain damage due to lack of oxygen at or before birth, he had needed a blood transfusion, many drugs. Simone had lost two litres of blood and had suffered a placenta abruption. I was incredibly lucky to have both Simone and Isaac still alive. I was taken into theatre where they were still working on Simone, and, Ive never told anyone this, when they took me in there and I saw Isaac with probably 10 medical staff with him, and probably 40 staff in the room (I couldn't see what was going on with Simone at all) I could contain my emotions no longer, collapsing in tears, being held up by one of the male nurses.

Isaac was taken to intensive care, and I was sat down with the family to explain what had happened. We were then taken to see Isaac, but before this was possible I was told more devastating news. Isaac had started to fit, in my eyes this was good news, as it meant his brain was working, but it appeared not - it meant the brain wasn't working properly and confirmed that brain damage had occurred. We were told that Isaac was going to be transferred to a specialist hospital when they found one with available beds to undertake brain cooling to stop further brain damage.

Simone was still in recovery and I hated that I was with Isaac and she wasn't. At this time, I hadn't given our baby a name. We had decided early on that if it was a boy, he would be Isaac Colin. Simone had always had the name Isaac since she was young as the name she wanted for her baby boy, and Colin was my Dad's name, who passed away suddenly while playing tennis four years ago. This may found stupid, but knowing that Isaac may not survive, I didn't know whether to name him yet or not, and wanted to talk to Simone before we agreed. I spent probably 20 minutes with Isaac, it wasn't easy - he was fitting continually, all limbs moving. He was perfect though, he was very long, seemed to be a big baby, but he was covered in wires, in an incubator, being sedated to try and control his fitting.

Simone now awake, I went to see her, and had no idea what to say. All she would say is where is my baby, it was heartbreaking. I had to explain that he was very ill, and was in intensive care, but the staff were doing everything they could for him. The paediatrician came and spoke to her about what had happened, and he was very honest with us - we had to prepare for the worst, Isaac was likely to die. Our lives that had started like any other day were now in absolute freefall. Isaac had shown us such strength to even manage to start his heart after such a length of time, we knew he was the ultimate miracle, but we needed him desperately - this was everything our lives had been leading to, and he was so very ill. Only a few hours after her C-Section Simone got out of her bed and was wheeled to see her beautiful baby boy. It was our first time together as a family, and was so so special, but so hard, and so painful seeing this beautiful baby boy struggling so much to survive for us.

At 6pm the ambulance arrived and it was time for Isaac to be transferred. Simone had to stay at North Middlesex until she was well enough to travel, so Simone and I said our goodbyes, I promised to look after Isaac, and prayed that he would fight so that Simone could spend more time with him, but my God it was so hard having to leave Simone. London traffic was chaos - the Olympics were starting in just a few hours, and it was quite a journey to St Thomas's hospital seeing how people react to blues and twos - I wasn't allowed in the back of the ambulance so was in the front with the driver.

At this time, I sent a message on facebook - needed everyone to pray for Isaac and for Simone, and the response was incredible and continues today with the facebook likes to the Running 4 Isaac page etc.

Once at St Thomas's Issac was taken away to be settled and to start the brain cooling treatment. I was put in a side room and sat with the consultant in charge for a good hour whilst she explained everything to me. She put me as much at ease as possible and discussed a trial that Isaac could be put on. She first explained what was wrong with Isaac. I can't remember the scientific name if I'm honest, but the basics were that as a result of the placenta abruption, Isaac had gone without oxygen, leading to potential brain damage. She used a very simple example to explain what was now going on. If you cut yourself, your skin cells around the cut swell to protect the area. If you suffer brain damage, the same thing happens with the brain cells around those that have been damaged, however, with the brain, this causes further cells to be damaged. The initial damage - that's irreparable, this secondary damage, can be reduced through brain cooling, reducing the body temperature to 34.5 degrees C and leaving the body in this state for three days. Its a technique that has been used for about 3 years, and has proved successful.

At the same time we were offered the chance to put Isaac on a trial. As well as the brain cooling Isaac would be given a level of Xenon gas in his oxygen supply, to act as a sedation and protect the brain further. Its a new trial the hospital was running, and only a few babies had been put on it, but, there were no negative side affects. It all felt very much like a race against time, I had documentation to read and with Simone not being at the same hospital we had a number of phone calls before agreeing that we would put Isaac forward to the trial - anything that these guys could do to help, we had to do for Isaac. Isaac was accepted on to the trial and that evening the treatment began.

The nurses at St Thomas's gave me a room where I could spend the night and it had an amazing view over the Thames to the Houses of Parliament. Sat in the room before being allowed to go and see Isaac it dawned on me that the Olympic opening ceremony was about to start (strange the things you think of) and this was re-enforced when the Houses of Parliament were lit up and turned into a big screen showing footage of the history of the Olympics. What then happened was the start of a regular routine - spending time with Isaac.

Once settled, I got to sit with him, in one of three intensive care rooms, each able to hold 6 babies. What was very noticeable from the start, every bed had a seat at the end and a table, and a nurse permanently with them. I was introduced to the nurse on duty with Isaac that night, and to the wider team that would be looking after him. They made me feel very much that they were a team that weren't just there to help Isaac but to help his family through this very difficult time. Over the five days we got to know the individual nurses that looked after Isaac very well, and will be eternally grateful for the amazing care and attention they gave Isaac, their pure aim to make sure he was as comfortable as possible.

The brain cooling suit took a bit of getting used to - it was basically a white suit with lumps through it which pumped water round the suit lowering the body temperature. In fact that wasn't all that took some getting used to. Isaac was no longer in an enclosed incubator which meant we could touch him, kiss him, hold his hands etc. That was lovely, but then there were also the wires - everywhere, coming out of his belly button, his hand, probes attached to his head measuring brain activity, monitors everywhere. Over the coming days we learnt a little bit about what all of these meant. What was very noticeable though, was that there was definitely brain activity, but Isaac was still fitting - no where near like he had been at North Mid, but still fitting, and the brain activity that was there - the doctors were very quick in explaining that it wasn't what you would call normal brain activity.

So began the first long night, regular calls to Simone who didn't sleep all night and was having problems at North Middlesex where she was asked if she had any frozen embryos which obviously sent her into a frenzy that her baby wasn't going to survive. My Mum and brother had joined me at St Thomas's and all we could do was spend time with him, feeling extremely helpless. The nurse that first night said stroking his arms, talking to him, all could help and although it felt very silly at first, what else could I do, so that's exactly what I did.

The following morning, after very little sleep I got to have another chat with the consultant. She informed me that Isaac was stable, the Xenon had had an affect, the fitting had reduced considerably and now consisted of a gasping reflex where it looked as if he was trying to breath for himself occasionally (although this wasn't the case), the brain activity had diminished due to the sedation and that she was confident that he would at least survive his time in the cooling suit. It was the first positive I had heard, but had me wondering straight away - what happens when the cooling suit comes off, and with Simone at the other hospital, I was desperate for her to make it over to St Thomas's. As it appeared did the nurses, who as the day went on kept asking if we had heard anything. I continued to be in touch with Simone, but as the day progressed and the time that she was supposed to transferred was moved further and further back, I became increasingly concerned. She was dosed up very high on morphine apparently to reduce the pain she was in, although, the 'situation' was also a reason given for giving her so much. It led to some pretty distressing calls as the day went on with Simone, as the worry increased that she wouldn't get over that day to St Thomas's.

For Isaac, that Saturday was a pretty quiet day, as the day went on he was taken off his sedation as the xenon seemed to be doing enough to stop the fits and the feeling was quite positive. The family all came at some point to see him and Simone finally was transferred over around midnight and finally we were together as a family. That night was strange - Simone was like I was the night before, not sure what to say or do, whether it would be ok to touch him etc etc, but we talked about what I had done during my time with him and it was second nature to Simone very quickly. What I saw was a mother with so much love for her son, and I prayed he was going to make it through so we could have a future as a family.

As the Saturday night/Sunday morning wore on Isaac started to fit again - the Xenon trial only lasts for 24 hours, so as this was working out of his system the fitting got worse, with the gasping again, and his arms moving quite a lot. It was a worrying sign for us, and the sedation was restarted to stop the fitting. What we found out at a later date, was that the other two babies that had gone on the trial had had the same responses when they came off the Xenon. But at the same time, we saw the first sign of something to grasp onto. When the gasping fit would start, Simone would put her hand on his chest and gently rub it telling him he was a good boy and the fit seemed to instantly stop. It may have been coincidence, but to us it was the first real sign - he could hear us, and the words good boy he would have heard many times in the womb when we would call our dog a good girl. It was a feint hope but it was something to hold onto.

As morning came, there were other signs. At first we weren't sure if we were imagining them, but as time went on they became stronger. Putting a finger into his hands, you could feel him starting to grip. If you stroked your finger across the base of his foot, he would wriggle his toes, curl his foot and kick out slightly as if he was ticklish. We all took these as positives and would repeat the touches just to make sure that it wasn't just coincidence again. Isaac's blood pressure remained good, his pulse was good and as we spent our first day together as a full family, we felt like things were really starting to get better.

Unfortunately, that was not the case. We will always believe that those touches and reactions were Isaac telling us he knew we were there. To us that meant there was brain activity that was positive. That evening our consultant took Simone and I into a side room and had a very honest chat with us. The reactions from Isaac were more likely to be reflex actions not caused by brain activity. And although to us the fact his heart rate, blood pressure etc was good, as our consultant put it, they were too good. When he fitted, his heart rate didn't change - when anyone moves in any way that heart rate should change. It could have meant that the brain was not able to talk to the heart properly, and with the heart being a muscle, it would just keep going. We were told that we should be prepared that some day in the future, the worst was likely to happen. We didn't want to believe it, after all, the positivity of the day, it really did feel that he was getting better. We discussed it at length and decided the most important thing for the time being, just in case, was that Isaac should be christened and it was arranged that the following morning that would be done.

We spent the rest of the day reading to Isaac, bringing some of his toys to him so that he had them to be cuddled up to. His favourite book was Guess how much I love you and we read this many times to him, as well as the Hungry Caterpillar, a Children's Bible and a number of other books. The phrase "Love you to the moon and back" will at some point be my next tattoo and we have also made sure that Isaac's gravestone has a moon on it as the book and phrase became very important in his short life.

Monday was a big day for Isaac and for Simone and I. Firstly, we had Isaac christened Isaac Colin Smith in a small short service in the intensive care unit. His nurse that day Debbie was there along with our families, and the hospital pastor christened Isaac, gave him a candle, and a wooden cross, which has stayed with him ever since including to his final resting place. Sounds stupid, but we had family photos taken at his christening. To us this was important, a christening is a very important occasion, and one we should have been having at our local church, St Cuthberts, but instead it was held at St Thomas's. The nursing team had even cleared that part of the intensive care ward, had cordoned the area off with screens so we had some private time for the Christening. It was very emotional and very special, and my brother, and Simone's brother and sister were named as God Parents to Isaac. We also had a new consultant for the week, and he went through everything with us again and gave his views on Isaac's current condition. They were the same as we had previously been told.

As the day progressed, we got to hold Isaac for the first time. Something we never thought was possible given all of the wires, and my God it was so incredibly special, even though he was on a bed pillow still, for Simone and I to hold him, to be that close to him and protect him after feeling so helpless all the way through this process, was so special. Simone also got to change Isaac's nappy that evening, something not at all easy given the wires, but again the nurses at St Thomas's were incredible, helping, supporting and making sure we were involved in every part of Isaac's life.

Monday evening, the brain cooling treatment came to an end, and a nervous wait began as over the next twelve hours, Isaac's body temperature was brought back up to normal, with everyone unsure how he would react and whether the fitting would get worse. What is evident from everything we have seen and been told, the brain cooling worked for Isaac - brain damage did not appear to get considerably worse over the time he was at St Thomas's. The crucial issue was the initial brain damage as had always been the worry.

With very little sleep, as we wanted to spend as much time with Isaac as possible, we would go back to Simone's room for the odd hour sleep, but wanted to spend as much time with Isaac no matter what the time of day, and once again St Thomas's were so helpful, we could come and go whenever we wanted, and whoever the nurse was that was caring for Isaac at that time would always greet us with a smile and have a chat about how Isaac was doing.

Isaac's fits did not get any worse, and by the early hours of the morning, Isaac was out of his brain cooling body suit. What we suddenly realised, seeing Isaac just in his little nappy was how incredibly long Isaac was. He had weighed just over 6Ib at birth, but was over 50 cm long. Over night I had the pleasure of changing Isaac's nappy as well, and we continued to read and just spend time together as a family.

We were very aware that as Tuesday began, Isaac was going to be going for an MRI scan now that he was out of his brain cooling suit. This would determine the level of brain damage, and we sat in nervous anticipation as a family, waiting for a number of hours for him to return from the scan. The scan results were back late in the afternoon and as we sat with the consultant, it was evident things weren't good. Despite what we saw as positives, the gripping in Isaac's hands, the foot movements, the reaction to Simone's voice, the results were certain. Isaac had suffered catastrophic brain damage from the lack of oxygen at birth. All sections of Isaac's brain, the grey matter, the white matter, all were damaged. There was no way that Isaac was going to survive. Our world suddenly fell apart knowing that our little boy was fighting so hard for us, and the medical team fighting so hard for Isaac, but was not going to be able to survive.

The consultant explained that what needed to happen now was that we should spend as much time with Isaac as possible, he was very honest in that he didn't care about any other family members, just us and us having time with Isaac. He also explained that we needed to think about when the inevitable happens, when his oxygen should be removed. We couldn't quite believe that we were even having this discussion, but were told that it was just a matter of time. We wanted to see if Isaac could keep fighting for a few more days and in our minds decided that we didn't want it happening before Friday - that way Isaac would have been a week old (No parents should ever have to go through this thought process - its not logical, and just shouldn't happen). By the afternoon the nurse on duty explained that Isaac was starting to struggle. They were continually having to up his medication to keep his blood pressure stable and his heart rate had dropped a bit. It was becoming obvious Isaac was starting to get tired. He had fought so hard, from that very first moment when he was born to have survived for this length of time and he was now getting tired. It was almost as if, he knew that we now had the MRI results. It was as if he was saying, Mummy, Daddy, you know whats going to happen, I'm tired and cant continue this much longer. It was utterly heartbreaking. What had been Friday was now becoming Thursday and possibly even Wednesday - less than 24 hours away - how could we ever be in this position where we were running out of time with our son.

We stayed up all night with Isaac, reading, taking photos, family videos and just spending time with our amazing son. Early on Wednesday we were told that a decision would be made later in the day by the consultant whether he felt Isaac could keep going till Thursday or whether his life support system would be removed late on Wednesday. He would have the ultimate decision, and it would be based on wanting to make sure Isaac never suffered any pain.

Once again the team at St Thomas's did their utmost to help the family. The decision was taken that the morning would be a time for us all to be with Isaac, and for the family to hold him, spend time with him, and ultimately say goodbye to him. The afternoon would then be for Simone and I to spend time with Isaac. The staff had taken out another of the intensive care beds and cordoned off a large section of the room for us. the rules of two visitors were relaxed and as a family we spent time with Isaac. Each family member spent time with him, talked to him, held him, savoured every minute they had with our amazing little boy.

The afternoon was very special, in that Simone and I knew what was likely to happen, but didn't want to focus on that - we just wanted to focus on our amazing little boy and be together as a family. We read to him, he was always in one of our arms, I even fell asleep holding him at one point. It was all so very peaceful. I sang my favourite song to him, one I had played many times on my guitar but he had never heard. I have to admit, I was a blubbering mess, but I hope he could understand the words to James Taylor's "You've got a friend"

Wednesday afternoon was our time, and we just spent it  together. At about 4pm the consultant came to see us. Isaac was deteriorating all the time, and he made the decision that it should happen today. He was concerned it may happen over night and out of their control and they did not want to do anything that could cause Isaac discomfort.

We were moved into a side room, just a room for Isaac, Simone and I, and the next couple of hours were just us, talking to him, telling him how he was our world, how special he was and how incredibly proud we were of him and of course how much we loved him. The consultant and nurse joined us and explained what would happen, and the possible reactions Isaac may have when they remove his life support system and then we prepared. We knew how tired he was, and then the system was removed. Isaac did not fight, he slipped away peacefully in Simone's arms with us each holding his hand and our world was gone forever.

Our beautiful little boy passed away at 6.56pm on Wednesday 1st August.

I'm sorry if this blog is very long, and rather upsetting - Ive blubbered most of the way through writing it, but I feel I had to tell Isaac's story properly, to show how incredible he was, but also to show the incredible care, attention, effort that the team at St Thomas's put in to keep him comfortable, to help him fight, to look after Simone and I and the rest of our family and for making what was an impossible and incredibly difficult situation as easy as it could possibly be (which really isn't easy at all). Since Isaac has passed away a lot has happened, but I think that needs to be kept for another blog, after all this one is all about Isaac's amazing short life.

If you've been touched by this story, and have any spare change at all - please visit the charity page. I have to run the London Marathon in Isaac's memory, to spread his story, to be the proud father that I am, and because both Simone and I miss him so incredibly much. At the moment it feels like our lives are over, but raising money to support the place that was Isaac's home, and to possibly help prevent other parents going through what we have gone through, gives us a focus, and to do some good in Isaac's memory. http://www.virginmoneygiving.com/darrenschallenges

Thanks xxx