3AM An hour after my feed, the alarms were sounding again, Mummy's bare feet came padding down the corridor as Daddy watched over me with deep concern in his eyes. I know he was thinking - is this it?? It wasn't as I eventually came round again after a bit of fussing.
Mummy and Daddy sat 'observing' me with the a senior nurse Helen, Mummy used to go to school with her a long time ago so they were nattering a bit I think this really helped Mummy and Daddy calm down after such a long and stressful day, she made them both a warm drink - this is supposed to help with shock apparently.
It seems as though my breathing is affected by my eating so they decided to make me go nil by mouth until Dr Burns came to see me later that morning. This meant setting me up on a glucose and sodium chloride drip. Its mean though as I'm really hungry and I do like my bottle, I cried and cried at 6am but they wouldn't let me have anything, Suze tired to help by giving me my dummy and some sugary stuff on one of my bottle teats but I wont be fooled.
Morning shift change over came and Tara was back to look after me and she arranged for one of the ladies in the pink tops to bring me some lovely lights for my cot. I still wasn't allowed milk just Mummy's rubbish finger. After the ward round I saw the Dr and he said I could have milk, I had 40mls and guzzled it all up - all that sulking finally paid off.
I am now having some other medication for the reflux called Domperidone (Daddy calls it My Champagne - Dom Perignion) also Senna to help my tummy. I am having less volumes now over three hours to help me manage my feeds.
Everyone is making decisions and they have decided what ever happens to me, the most important thing is that I get lots of cuddles, food and sleep. They have been talking about when I can go home, only when I have been fit free for 24hrs and then they will reassess it. Daddy is counting the hours.
Mummy asked about having Oxygen at home to aid in an emergency if I have seizures again - its being looked into. The homecare team are responsible for organising this. When I am feeding Mummy and Daddy have had the Oxygen on standby incase my levels drop.
Grandma came this afternoon to bring Mummy and Daddy clothes for their second night in the hospital. Mummy had asked her if she could get me an advent calender but no luck. She'd been out with the Doggies in the snow - I still haven't been it to see the snow so I'm a bit jealous. Then afterwards Nanny Tina and Aunty Bella came because Aunty Bella had hurt her wrist and had to be at the hospital too.
The ward is very busy and sometimes other nurses
had to come in and check on me - I got to see my nice nurse Emma who helped me to burp and she gives lovely cuddles. I have also been cuddling Flossy Bunny.
My tummy was very swollen after my tea so I had a Glycerin tablet up my bottom to help me poo - it really works fast!!!
Daddy slept in my room again, because Mummy says he could sleep through a tornado and she can hear mice farting so she went into the ward room. I have an apeonea monitor on me now which monitors my breathing and I was very settled, enjoying staring at my lights.
I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
How to get the best out of this blog...
All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Friday, 3 December 2010
Wednesday 1st December - All advent calenders out of stock
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