UCLH - The future started here

This is the second part of Frankies story, the second place he had ever been, the second hospital he had been in, the second day of his life and most difficult, the second day i wasn't with him.

Frankie was barley 6hours old when he was taken from Kings Lynn Hospital to University College London Hospital (UCLH) he required a therapy Kings Lynn didn't offer, due to his 'hypoxic ischaemic encephalopathy' (HIE) he required 'cooling' , this is where they cool the brain for three days at 32degrees celsius to prevent and further brain damage, or death. This had to be done within 6 hours of birth, now i have yet again done a little research about this, but again it is complicated, so i explained it briefly and in easiest terms.
As Frankie left my bed side, in his large incubator, loaded with many different drugs, not only did i feel like i had not seen or met him properly, i feared so badly that it would be my only and final memory of him. But he is my boy, a brave solider and he made it, he made his first journey, just like he continues to make them everyday.
He had been christened before he left, Frankie Joe Smith, a beautiful name for a beautiful boy. Frankie left, our family's started to fade out and it was just us, two new parents, together, yet so alone, without our son. This was to be the first nights of many we spent away from him, most people are impatient to get home from hospital and start their family life in their own home, i know i was with my daughter, in and out in 24hours and even that was too long for me. The hours past and we waited in anticipation to hear from UCLA, there were no words, so we sat in silence. The moment the nurse walked through the door was sound to my ears, Frankie had made it safely and was in the best hands. I desperately wanted to be with him, i feared he would pass and my only memory would be of seeing his small body, his face mainly where his lips chattered like he was shivering.
I wasn't allowed to leave the hospital or travel, i had only had an emergency c section 6 hours prior and it wasn't 'safe' what did that matter to me though, i needed to be with my son, like any mother would. Time went so slow and was filled with nothing, emptiness, waiting, 9pm turned into 1am, the hustle and bustle of a busy ward could be heard as my door was occasionally opened when i was checked on, but other than that just silence, i was so tired, but i couldn't sleep.
Morning came, the day after your baby is born you expect congratulations once you have shared your good news with you family and friends, but what was there to congratulate, you expect cards, but what would people write in them, you expect your baby, but he was 100's of miles a away.
We spoke with UCLA that morning, i was desperate to see how our little boys night was, i had had nightmares without even being asleep about his first night there. I remember my mum writing down what was said in the call, being on morphine for almost 14 hours at this point i was all over the place, it was lovely to have it to look back on, i still have it, every time i read it it makes me realise how far Frankie has come. The nurse explained to me that we needed to be there, he needed his parents, we couldn't hold him, touch him, kiss him, but just being there would be a benefit to him. I was more than ready to go, however it seemed that if i was to go i had to go stay on the "maternity ward" and there wasn't a spare bed, there was probably someone that had been in hospital for a week after having their baby and milking a few extra days, but they couldn't fit me in, a mother of a child that could pass away and second and i would have been a hundred miles away. This when i look back makes me rage!
So yet another night i spent without my son, i told Brady it was best for him to go to be with Frankie, there was nothing he could do for me, i was inconsolable, nothing he could say would make my son better nor change the last 24hours, but at least Frankie having one of us by his side would make me feel that little bit better.
The pictures are the ones i received of Brady when i arrived. My emotions were shot to pieces, i was so pleased Brady was there with him, i was heartbroken to see how much equipment surrounded him, so alone i lay there thinking of our future, i pictured Frankie in a wheelchair, i thought about the care he would need, if i would be good enough, if i could cope and how it would effect Brady and I as a couple, were we strong enough, then i remember just laying there i just cried and cried and cried, until i fell asleep, exhausted.

Do i know enough?

Whilst i was doing my last post about Botox, or Botulinum toxin as it is professionally called, i had to do a bit of research. Yes, i don't know everything i will admit it. Now Frankie has had this twice, yet i never really knew all that much about it, i knew it would be beneficial to him, but what else did i know? It would seem not much, the more i researched the more complicated it all became, new words, long long words, some even had numbers, blew my mind a little, then there were new methods of use, and finally the interesting fact that if you are exposed to botox it isn't likely to do to much harm as you become immune over a period of time and the effects of it no longer work, good if you were accidentally exposed to it, not so good for the people that rely on its benefit greatly. My question is, how much do I need to know? Now i am not a doctor, would it be easier if i was, would it be worse? These questions i am unsure on, but for now i will let the doctors do their jobs and i shall do mine, being Frankies Mummy, i know a little of everything and for now that too is alright by me :)

Botox?

That thing famous women have to make their faces look frozen? Katie Price, Kylie Minogue, Amanda Holden, we've seen it all, across the tabloids, in every magazine you pick up in the waiting rooms in hospitals, which i have noticed are always months out of date. But anyway, thats one sort, but not the type i am talking about. 
The one i am talking about is the one used to help with spasitsity (tight muscle tones)and dystonia (fluctuating muscle tone)
Now i could tell you all the ins and outs of it all, (feel free to ask any question) but i wont go into it all now!
My son today had his second lot of botox, how did i feel, nervous, i mean most people cant stand seeing their child having their immunisations they require whilst they are an infant but knowing that you child is going to be injected over and over, up to 50 times, in various areas in his little body, into his muscles, well that enough to make anyone worry, now like many people have said to me (rolls eyes) "he will be asleep", yes i am fully aware he shall be asleep, put to sleep, again, for the second time in 6months (Frankie had his first lot of botox and a gastrostemy tube fitted in September 2012)Putting anyone to sleep has its risk, but with a small child as young as 3, being put to sleep again, i am going to worry, i am  human afterall, and more so, his mother. I wasnt sure what i was more worried about, the fact he was going to have his tiny little limbs injected, the fact he would be out to sleep again, or the fact i wasnt with him (his dad took him as his little sister, my daughter, Lottie needed looking after)  
However all said and done, he was fine, fine and dandy, healthy and happy, home safe in my arms and on the plus side the botox seems to have started to take effect allready :) Happy Frankie, Happy Mummy.

So here it all starts...


Frankie Joe Smith

Born 4th December 2009

@ 12:14

My beautiful boy.

My sunshine, the brightness to any dark day, and there are some, there are often many.

Frankie was born 4 weeks early, after a normal healthy, nothing to serious pregnancy (we all get the usual sickness/tiredness)

On the morning of the 4th December i felt great, better than i had done in weeks, being 8months pregnant, i felt fat and uncomfortable as many other do and i was more than read for my little man to join us in the world, however i never expected him to arrive so soon.
As i walked downstairs my waters started to go, now i don't know about you, but i expected a massive 'wosh' and my belly to go flat, but no they dripped, like a tap not turned off properly! As i had read i hopped into the bath, hoping to relax, you know as thats what people do don't they? It was then i noticed my tummy was flat, being my first pregnancy and not sure on the whole labour thing i booked an appointment to see my doctor. Before leaving my house to go to the doctors i felt a strange feeling, like i had given birth to a foot, arriving at the doctors i found out this wasn't a foot, it was a cord, a cord being pressed down on by my sons head, cutting off his oxygen supply, this day, the day that started of so exciting i now wanted to end, the doctors called for an ambulance and i was to be taken for an emergency c section straight away, at this moment i never knew what a 'cord prolapse' was, now i live it every day, well at least the effects of it. Waiting for the ambulance time seemed to pass so slowly, as time passed all i could think if was why was this happening? Now i am not one of those people that think "did i do anything wrong?" i know i didn't, i was careful, nor did i drink/smoke. i thank god to this day i know i didn't do anything wrong as what i have experienced this past 3 years, i know i couldn't have lived with myself knowing it was my fault. The ambulance finally arrived, finally i was ready to go, ready to have my baby operated out of me, fear that he wouldn't have survived, hope that he would be ok. Travelling to the hospital all i could think about was 'cant we go faster' it was snowing, just my luck, you will work out though my blog i am a very unlucky person, i don't know what it is about me, if it can go wrong, it will, its mainly the small things but still, sometimes the small things are the worst. 
Making it through the snow we finally arrived at the hospital, being wheeled through past the shop and cafe was not one of my finest hours, i had a man trying to keep my sons head off his cord (i can only imagine what that may have looked like to people)

Going into the lift a old woman said to me "Oh your having your baby, best of luck" those word and her voice will never leave me, i just couldn't say anything, i just smiled and hoped that was enough, after all, it was all i could manage. 
Going into theatre with all those people in there petrified me, i wondered why so many people needed to be there, for one baby, now i know and coudldnt be more thankful. being put to sleep was terrifying, but it was over fast, 1, 2, 3, 4, and i was alseep. I slept, i slept for what seemed like and eternity, i havent had many anaesthetics  so i wasnt sure how i would be effected, but as i woke, i woke alone, in a large room, with lots of machines, i wanted to move, but i couldn't, fear, pain, loneliness overwhelmed me. 
For a moment i forgot who i was, where i was, why i was there, that i had a baby, that i had even been pregnant, that untill i was bought a photo, a photo of my son, my beautiful boy, covered in marks and scratches, wires and tubes, but he was still beautiful, oh so beautiful. I was relieved he was here, i loved him so much allready, but i feared for him, for his health, the extent of his health issues. I was taken back to a room, a private room, the midwifes didn't want me with other women on the wards, the other women had their babies and what did i have? I had nothing. I was alone. No bump. No baby. I was all alone. I was finally reunited with my family,but i didn't want anyone,i didn't need them, i wanted my son, i needed him. we all sat there, i just remember having morphine and more morphine and more morphine, it seemed to hurt less that way, the feeling of emptyness and numbness still hurts, don't be fooled, it hurts a lot. Doctors came and spoke to us, all i could hear from her words were 'my baby isn't ok' 'my baby isn't here' the only question i wanted an answer to at that time was "When can i see my baby, when can this mother see her son?" well the answer to that was 3 hours later, 6 hours after Frankie arrived in the world he was bought to me, in an incubator, being pumped with drugs, he was tiny, a ting little dot, he looked like he was shivering, his little mouth quivered. At this point Frankie wasn't Frankie, he was a baby, a baby i loved so desperately, and needed so badly, a baby i had only seen for a few seconds, a baby i had not seen come into the world, a baby i had never kissed or held. a baby i had no memory of. 
Frankie was christened, just like that, right there in the hospital, in my room, in the first moments i had seen him, my first ever moments i shall never get back. Frankie had suffered such severe brain damage he needing a treatment, one they didn't offer in Kings Lynn, they were taking him away, to London, to travel, travel miles and miles, alone, without me. I felt like my heart had been ripped out, they brought me my boy for literally minutes, of which i felt i shared him with everyone else in the room, to take him away from me to make a journey no one was sure he would make...but he did, his first hurdle in life, and this was the start of many more to come. This begun the story of Frankies stay in UCLA. A story i shall never  forget. Just a small part of 'The story of Frankie'