July 2005


With a bit of luck Harry and Mary will be home tomorrow.  The Doctors will do a final check on Harry tomorrow morning before discharging him.  So hopefully all goes well.

Posted one photo from yesterday when Harry was lucky enough to get acquainted with Uncle Robert.  We’ll upload photos of the coming home tomorrow.

It’s still a bit of a roller coaster ride, but we seem to be over the scary bits.

Dr Koh has been corresponding with Dr Whitington, and the theory is that Harry has probably been affected by the neonatal hemochromatosis after all.  In some ways this isn’t a bad thing – it at least means that those 21 weeks of immunoglobulin infusions weren’t for nothing.  This conclusion was based on the raised ferritin levels.  However, all the other liver and renal function tests indicate that there’s no damage.  To help get things under control he’s now on Vitamin E (antioxidant) to counteract the effects of iron in the organs (which acts as an oxidant).  As Dr Whitington said in an email to Dr Koh today, there’s no need to worry, 80% of the babies treated with the immunoglobulin have shown signs of NH, and they are all now 100% healthy.  Harry’s signs seem to be on the mild end of the scale so all should be OK.  At this stage we’re on track to get him home early next week (maybe even Monday – fingers crossed!)

Good and bad news today.  On the good side Harry had a couple of tests to check his little heart which he passed with flying colours.  But on the not so good, he’s been losing weight a little faster than he should – the nurses threatened him with a drip (not another needle he cried!), and he’s been responding by drinking with renewed vigour, so hopefully he’ll start putting some weight back on soon.

He also had a couple of repeat tests for NH indicators.  While his alpha fetoprotein levels were normal, his ferritin levels were up.  This is a bit strange considering that all these indicators were in the normal range at birth, leading to the all clear confirmations earlier in the week.  At this stage though it’s “not anything to get worried about” (Doctors),  we just tend to get anxious about even the minor stuff (we’re going to have to get that under control).  The most unfortunate thing about it all is that it’s probably put his getting home day back until Sunday or Monday.  He doesn’t look to worried though does he…

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On the way home from the hospital, I was lucky enough to hear an interview and then concerto performed by Branford Marsalis with the Adelaide Symphony Orchestra.  So I drove up the top of Castle Hill to listen to sax and think about stuff… You wouldn’t call it a big Friday night, but I had fun – great week all up!

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(View from the top of Castle Hill)

 

I mentioned Guan in one of the posts a few days ago. Dr Koh is one of the most compassionate person I’ve come across and Mary and I are extremely grateful for the help he’s given us. I think his compassion is obvious when you look at the work he’s doing in this article.

On the whole I enjoyed day three of life.  Lot’s of sleeping, feeding and fussing… A few more photos posted here (click on the ‘next’ button to navigate to the newer ones)

Starting to get a bit tired of the camera flashes, but such is the lot of a long awaited baby.. (sigh)

Harry’s now over 24h old and got the all clear from his doctor, Guan Koh, this afternoon (for Townsville people, coincidently there was an article on Guan in today’s Townsville Bulletin).  It’s almost too good to be true – an apparently perfectly healthy baby!

Mary’s been pretty tired, but Mary’s parents were very happy (understatement!) to get their first real look at Harry

Harry finally arrived into the world today at 10:30am weighing 3.5kg!  It’s been a long 9 months – what with Mary’s treatment and memories of Ellen, but at 9:45pm tonight everything is looking really positive.  Mary’s already been able to feed Harry a couple of times and he looks really healthy… even cheeky!

There are a few more tests to go, but it certainly looks like he’ll be fine.  More photos here.

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