Showing posts from May, 2003
Rose's doting sister, our gorgeous five-year-old, Hannah
Rose's adoring brother, our first-born, the beautiful Lewis. He's nearly ten years old.
It's great that Rose will take breast milk any way it comes. Our older kids always refused a bottle, so this is a new experience for Shane.Rose in the arms of her beloved maternal grandmother

Written from home the evening of the day we first met with a paediatric liver specialist. I was in a shocked state, with the realization intensifying that we were facing a serious degenerative disease.

"Our darling little Rose was seen today by a hepatologist (liver specialist) at the Royal Children's Hospital. She reckons Rose most likely has a serious degenerative liver condition, called biliary atresia. The less likely, and far more benevolent possibility, is that she simply has a cyst blocking her bile duct.

In any case, she referred us to a paediatric surgeon . . . at the Royal Children's. He was very kind, and saw us immediately, the upshot being that Rose is booked in for surgery this coming Tuesday.

The surgeon will have a look at her to confirm what's going on, and will operate according to what he finds. He didn't want Rose being put through unnecessary preliminary tests such as liver biopsy - he wants to get right in there…

This is an Australian friend living in the UK whose baby girl is just 10 days older than Rose.

In almost daily emails we shared our pregnancy experiences, and we both had uncomplicated births in a birth centre. We have been on a similar high with the arrival of healthy daughters, but our situations have suddenly diverged with Rose's persistent jaundice and growing evidence of a liver problem. She's very concerned. Here I'm responding to one of her emails.

"I was rewarded yesterday morning with 3 smiles from Rose - very reassuring. Also, she's incredibly bright when she's awake, has a fiendishly strong neck, and is utterly gorgeous - all reassuring.

The paediatrician reminded me the other day, when I commented in despair that Rose just seems normal, "She IS normal! She has this problem, but we've picked it up early, and at the moment, just remember you don't have a sick baby."

It's all very confusing. An…

"The liver scan Rose had last Monday did indicate something awry with her liver, and we're booked in to see the paediatric liver specialist at the Royal Children's tomorrow. We've been seeing a fantastic paediatrician in the meantime.

The ultrasound seemed to show that Rose was born without a gall bladder, and possibly an incompletely formed bile duct. We're still not certain though, and she'll need more scans and maybe a liver biopsy. We'll find out much more tomorrow, we hope. A possible diagnosis is biliary atresia, which is pretty serious, and would mean that she'd need surgery. Again, we find out more when we see the specialist, so we're trying not to worry too much before then.

We've been flat out trying to build Rose up with more breastmilk, and she's been responding. She managed to put on about 150 grams last week. All this means that I'm a fulltime milk factory, with Shane in prime support role.…

Rose is aged two weeks and three days.

This email was written to friends after we spent Rose's first week and a half in full-blown celebratory mode. Rose was born in the Family Birth Centreat theRoyal Women's Hospital, in the presence of siblings Lewis (nearly 10) and Hannah (5), as well as both of my parents!

A newspaper photographer turned up at the birth centre when Rose was only four hours old, taking shots to publicize the hospital's annual Mother's Day fundraising appeal. Hearing that Rose had been born in the presence of extended family, the photographer took the story to one of the paper's journalists. She later interviewed us over the phone.

We were surprised to find Rose's photo, huge and in colour, on that paper's front page a couple of weeks after her birth, along with a whole family photo and text piece inside the paper.

This email was written after the bubble burst, with knowledge dawning that Rose's persist…