Now this we could do without!

Zak was really giving us a run for our money. He had now been formally diagnosed with Cerebral Palsy, and we were still having issues with his weight and feeding. Little did we know there was more surprises harboured up his sleeve!
He was around 4 months old when he decided to liven things up a bit.
Laying on his blanket on the floor, he would suddenly jump. His entire body jerked, just once, but it did it in style. His arms would cling to his chest, his knees would spring in to the air and his head would be thrown to the left. He screamed. We were never sure if he screamed because of the suddenness of the jerk, maybe shock, or if it were that they hurt him, but he screamed.
After a while, these jerks were happening several times a day, and there came a point where we needed to find out what was going on.
At hospital they said he had something called Sandifers Syndrome. This is where Zaks reflux is causing him a lot of pain, and this 'jerk' was his bodies way of dealing with it. They said not to worry and that if we can control the reflux then this would go away.
Ofcourse we were relieved. We gave him some Gaviscon and Rinitidine, and waited to see the results.....and waited......nothing. If anything he seemed to be getting worse. These individual 'jerks' were now coming in clusters of 10, 15, sometimes 20. We knew this wasn't right and soon got an emergency appointment to see a Neurologist.
The appointment was brief. I explained how this all started, that he has CP, and that these 'jerks' were now coming in clusters. That was all she needed to hear. We were rushed to the hospital for an emergency EEG with the words "West's Syndrome" ringing in our ears.
They were looking for something called Hypsarrythmia, a specific pattern found on EEG which would confirm our worst nightmare. Zak has Epilepsy.
If we caught it quickly enough there was a very good chance that we could beat this. We were admitted to hospital that same week, and started him on a course of Steroid treatment called Prednisalone. After the first week I was ready to give up. This beast of a drug put our poor boy through hell. He was more stiff than he had ever been, physio couldn't do anything for him. He was aggitated 24 hours a day and never slept for more than 2 or 3 hours at a time. By the third week though, we started to see some improvement. He still wasn't sleeping at night, but he had become much less aggitated, and was thoroughly enjoying his food. And better still the 'jerks' were stopping.
By the time we were allowed home he was off all the drugs and the jerks had gone. We took a deep breath and crossed everything in hope that they stayed away....which they did....for 10 glorious days!
On that 10th day nothing was out of the ordinary. We were watching TV and Zak was on the floor at my feet. It was his sister who noticed him first. She shouted that "Zak is doing something funny with his legs Mummy"!!!!
As I looked down, he looked ok. I could see a bit of a shake in his legs, but zak has a thing called clonus, and shaky legs were nothing unusual. But then Ashleigh had seen clonus several times before, why fuss about it now?? So I kept a watch.
Seconds later Zak started to lift his knees and he turned his head sharply to the right. Together, both legs started to violently shake. Much harder and faster than any clonus I had seen. And it was odd that they went together, clonus is usually one sided. His face turned red, then purple and his eyes looked like they could pop at any second. He was struggling to breathe and continually shook for what seemed like an eternity.
Trying hard not to panick and scare Ashleigh, I calmly told her to get my red book, which held all of the emergency numbers. I called the childrens ward as they know us very well, and asked what to do. They sent an ambulance and we sped off to the hospital.
By the time we were half way there Zak had already stopped siezing. His heart rate was dropping back to near normal and his temp was fine. They said he had had a Tonic Clonic Siezure. Now was the time to start him on a regular anti-convulsant, and he was prescribed Epilim (Sodium Valproate), and we went home.

Coming home.

After a five week stay in hospital, it felt very scary to take this little bundle home. We had found out that same day that because of the problems with the delivery, Zak had a condition called Hypoxic Ischemic Encephalopathy stage II, or HIE. Of course, as a Mother, you want to find out as much about a diagnosis as possible, so with a hot cup of tea I went in to the conservatory and loaded up the computer. Google became enemy and best friend all in one. I needed to learn about this thing, but what I was reading filled me with fear.

HIE in blonde terms means brain damage caused by lack of oxygen. The extent of this damage was still to unfold. We constantly heard phrases like "we don't have a chrystal ball" or "no-one knows how this will affect him until he is older", and my favourite "suck it and see".

We knew quite quickly that Zak was no average baby. At 2 months old, he still hadn't managed to smile. He never looked at things and his eyes often wandered up to the top of his head. His hands were permanently fisted like he was holding a secret that in time he might choose to share. His legs would do circles like he was riding a bike, and his arms paddled.

Zak had problems with his food too. There was no way he could manage a bottle. Every meal would take 2 hours to complete, by which time it was time to start again. He vomited in dramatic style with every feed, and even stranger, he would suddenly, with no warning, throw himself backwards. You really had to be on the ball to catch him.

If he was sitting on your knee, he would be ok. He would be quiet, and between the back arching, he would be quite content. Then there was the other side to Zak. Prams, seats, beds, carseat, especially carseats, were like the electric chair to him. Just to travel 5 minutes in a car would result in this wreck of a child, covered in sweat, drool, and often blood from biting his tongue. He would arch constantly, turning redder and redder in the face, so much so that if we reached our destination, the relief of all that pressure would result in a vomit decorated car. We never thought it would end. We tried everything but could see no end to this despare.

All of these things seemed to be pointing us in a very frighteneing direction. Then one morning our fears were realised. One of Zaks letters from the consultant he now saw regularly, had a short list of 'problems'. It seemed to jump off the page and slap us square on the face, 'evolving Cerebral Palsy'.

Suddenly things started to piece together. All his funny movements, his struggling with food, no eye contact and the distinct lack of a smile.

We fought for what seemed like a life time to get food in him, but with every success came the inevitable vomit. Nothing would stay down. Doctors said he has GORG or gastro osophageal reflux disease. We spent a few weeks in hospital trying to figure out what to do, and somewhere along the way my hubby came up with the idea that it might have more to do with his milk than the reflux. We changed to a dairy free milk, and withing 3 days Zak went from vomiting every half hour, to just once or twice a day. We left hospital feeling that we had conquered our first major hurdle, it was great!

After a few weeks on this new milk, we really felt like we were seeing some success, so it was baffling to realise that Zak had stopped gaining weight. He was eating better, even trying little bits of food from a spoon, which infact he managed better than the bottles. It didn't make any sense.

We were introduced to some more people, who in time would become a huge, permanent part of our lives. We met Evelyn, our physiotherapist, and Elspeth out Community Care Nurse. They are two of the nicest people you could meet. Physio explained that Zaks muscles are very stiff and are on the go 24 hours a day. We imagined how difficult it must be to hold a tensed muscle for any length of time, with no option to relax. The amount of calories it would take to sustain that amount of muscle stiffness was way more than we could get in him. But we were not going to give up and tried everything we could to help him.

He's my son.

He’s my son. (By Margaret Hall)

You lie there. Unaware of the panic that now surrounds you.
Your head bobs with each compression. Yet still you lie there.
You make no noise, while inside I am screaming.
You have not yet been introduced, yet Daddy’s heart hurts with love.
I turn to him now, and wait…
The silence is unbearable. I wait…
A single tear runs slowly down his face. Yet still, I wait.
I cling to hope and faith and pray that soon the silence will stop.
You are fighting so hard, I can feel it.
You already bare the scars of a courageous war.
You are beautiful, perfect.
Don’t give up now.
Brave warriors join you in your battle.
They heard your silent calls for help.
They take you from this fear filled room
And surround you with warmth and your first glimmer of life.
Comforted by the machines that now support you,
We adapt to our new role as spectators of your fragile beginnings.
The rise and fall of your chest is addictive to watch
Not daring to look away, for fear it might stop.
Your leg starts to shake. My heart misses a beat.
You shake all over now, and an alarm sounds.
Once again your silence is heard
And the brave warriors return with unquestionable vigilance.
They fill your precious body with healing liquid
And you return to your silent post.
Days go by and slowly but surely your enemy shows signs of defeat
The rise and fall of your chest is fighting against the machines
And you inhale your first scent of life.
We are full of emotion as our skins touch for the first time
We cry and imprint this memory in our souls
We stare at this work of art, taking note of every line
Not wanting to forget a single moment.
There is cryptic talk of damage to your brain
I am sure that this must be wrong
It feels unreal and we look at you lying there so innocent
How can this angel be so perfect and have so much that is wrong.
The tears fill our eyes as your life is unveiled
And we hurt deep inside for the loss of a boy we once dreamt of
But here is this child so handsome and strong
Our purpose is clear, no more questions need asking
He is perfect, he is needed and loved, and most importantly
He’s my son.

The day our lives changed for ever.

7 months pregnant with my boy, a baby brother for Ashleigh, the perfect picture of a happy family. Everything was well, baby was healthy, I felt great, life couldn't get much better than this. The biggest things I had to worry about in life were rediscovering my feet and figuring out how something so big can possibly get out of 'that' hole. Little did I know how much our lives were about to change.
I had started to attend my antenatal appointments regularly as I was nearing D day. There was never anything to report other than this baby getting big!
Remembering how big Ashleigh was when she was born, I started to feel a little concerned that the size of this baby could cause problems. When I had Ash, she was a lovely bundle of pink with a blonde topping. She was perfect, but she was a little bit stubborn on the coming out. She had a shoulder dystocia, but with a bit of a twist and poke in the right places, she was born. Our happiness was short lived though. She started to have a few breathing problems and was a bit cold, but a couple of days of extra oxygen and mastering the technique of breast feeding, we came home.
As our boy got bigger and bigger, the memory of Ashleighs delivery haunted me, and with every antenatal appointment came the question "please can I have a C-section"? annoyingly met with "no".
Apparently there was no reason for me to undergo surgery, even though my then smaller baby got stuck, and this baby was only getting bigger, running the risk of becoming more stuck. But my concerns fell on deaf ears, and in 'their' infinate wisdom I was induced the day after my EDD.
From that moment our lives had started on a rollercoaster we wished we had never got on.
I was given the first pessary in the morning of April 22nd '07, and waited. The London marathon was underway, and I joined the athletes in my own tailored workout. The birthing ball became my siamese twin. Anyone that tried to take it was told in no uncertain terms to back off!!! As the runners neared the end of their race, mine was just beginning. The contractions were getting strong, but my cervix argued with the pain. The two could not reach an agreement. One was saying "oh my god, oh my god"!! the other was saying "we are going nowhere"!!.
I tried to tell the midwives that I was in labour, but they sided with my cervix and decided to try another pessary. We joked about how silly that idea was. Knowing how things went so quickly with Ash, another pessary was just madness and they would have to prepare a rugby scrum to catch this child when I shoot him out at high speed. I wish I knew then what I know now, none of us would be laughing.
Unfortunately, for legal reasons, some of this blog will have to wait till there comes a time I can speak openly about what happened in the following hours. I can however state some of the facts.
My boy got stuck. History well and trully repeated itself but with severe consiquences. My waters brole at midnight, stained with meconium. I mistakenly thought I'd had him, but was met with a painful reminder that things were really far from over. I had not fully dilated, and my boys heart rate was dipping. Things were becoming a bit urgent. They needed to get him out. I pushed, they pulled. They tried with a ventouse, then forceps, then again with a ventouse. Eventually his head was there. I reached down to feel him, and it was wonderful. I was in ignorant bliss of the severity of the situation. A bit too much gas and air.
Like his sister 8 years before, his shoulders got stuck and the fight started again. But thankfully within minutes, he was here.
I will never forget how it felt to go from being so happy, so excited. Knowing I now had everything I ever dreamed of. Turning to my husband, still holding my hand with that new Daddy tear in his eye....to the realisation that that tear wasn't one of elation or pride, but one of dread and fear.
Turning to look at my beautiful baby, there was no sound at all. I could just make out the top of his head from behind 'too many' doctors. His head moved from side to side and it took a few seconds before I could understand why. As one of the nurses stepped to the right, I could then see that with every turn of my babies head, came another heart compression. They put a mask on his face, tried so hard to get his heart to start. I couldn't watch. I turned to look at Gary, and waited for that look of fear to turn to the tears of joy we should have had. But they never came. Alarms were sounded, and they took my boy away.
Thinking back to when Ash was born, I tried to tell myself that he will be fine. He is just having a hard time breathing....just like she did.
I had a shower, and walked back across the blood stained floor to my cup of tea and slice of toast.
They said to get some sleep and to come see him first thing.
During the night, they had put him on a ventilator. He was fitting almost all the time, and they had to fill him with drugs to try to stop them....they weren't working.
But this was the first time I got to see my beautiful boy. He was a big boy, with darker hair than I had imagined. He was covered head to foot in wires and tubes, with alarms going off here, there and everywhere....but none of that mattered. He was here, he was my boy, my Zak.