Saturday, 30 March 2013

fighting and crying ~ a good thing

Always an individual with his own clock, Smiler arrived three weeks late at St Michael's Hospital, a specialist maternity hospital in Bristol (built at the top of a very steep hill, perfect for all those pregnant women to get to. . .).  Next to him in NICU I remember a teeny tiny little boy, who had been born at just 25 weeks.  There hardly seemed to be enough baby to fit all the tubes and wires into.  By comparison, within a few days Smiler had perfected pulling out the ng tube, his wrist ID was taped next to his name card because he kept wriggling out of it, and the SATs monitor  for his big toe was off as much as it was on.  Every time someone turned up wanting some blood, Smiler would fight and cry ~ it's only looking back that I understand why one of the consultants told me that was a good thing.  

I remember thinking I just wanted to take him home, that if we could just get out of the hospital everything would be alright.  It felt as though the more people examined him, the more they found wrong, so if only they would stop looking, he'd be okay.

When the blood results came back I was told the doctors wanted to  see me to talk about the results ~ I remember feeling sick.  Even then, red flags streamed through my mind, and the bells rang so loudly that I could hardly hear when the nurse said the consultant would be coming at eleven.  I knew they wouldn't want to see me to say everything was fine.  And everything wasn't fine.

By the time we left the hospital, Smiler had his own little hareem of consultants.  Within a month he'd gained some more hangers on, and the list of 'copy to' people at the end of every clinic letter seemed to get longer each appointment we attended.  There was a paediatrician, a geneticist, a cardiologist, a urologist, a neurologist, an Ear Nose and Throat (ENT) Specialist, a physiotherapist, an occupational therapist, a paediatric surgeon, a Speech and Language Therapist ... and a partridge in a pear tree.

We've shaken a few of the specialists off over the years, but gained a few new ones too.  Some of the things that caused the most concern at the beginning have turned out not to be much of a problem for Smiler, while other difficulties seem to have come out of the blue.  Whatever life with Smiler was going to be, it certainly wasn't going to be dull.


  1. Gosh thank you for sharing this. He's just gorgeous and it's lovely to get to know your family a little better x

    1. Thank you ~ I think they are all wonderful, but then I'm biased!

  2. Thank you for your kind words about my sweet Baker Boy!

    I know all to well about the haul of specialists that have accompanied us on this journey. I love your positive perspective and optimism.


    1. Thank you for visiting Jennifer ~ I hope your amazing Baker Boy can shake off a few of those specialists soon!


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