Thursday 28 February 2013

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.






2 comments:

  1. Hi Natalie, your mum told me about your blog as I have a daughter with special needs too.
    Although our situations are totally different as my daughter has "Global Developmental Delay", I may have been through similar things that you will go through as Frankie gets older. If you have any questions ( not of a specific medical nature as you seem to have that covered, but anything else) please contact me and I will try to help.
    I was once told that "Special Children are given to special parents to care for" and I can see that this is true for you and your husband. Life won't be easy but your little boy will bring you much joy.
    Take care and I am here if I can help!
    hugs Alyson x

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