"Last Monday we brought Rose home from her second hospital admission. For her major surgery 4 weeks ago, she was only in hospital for 7 nights, but her second admission lasted 10 nights. Again, Shane and I stayed with her the whole time, but on this occasion the angelic staff on the ward gave us a private room with an ensuite. We were very well looked after!

For those of you who haven't been filled in yet: Rose has a liver disease called biliary atresia. I've cut and pasted a bit about it at the end of this email if you want to know what the hell it is - we'd never heard of it before Rose was diagnosed!

Rose had corrective surgery called a "Kasai procedure" a month ago. We still don't know whether it worked (it only works in 50% of cases), and actually, we suspect that it hasn't worked. We'll have more definite news on this in a couple of weeks. Most likely is that Rose will one day need a liver transplant.

The most recent 10-day hospital admission happened when Rose started throwing up one night, and she quickly dehydrated. They admitted her the next day because of her dehydration, but also in case she had a liver infection called cholangitis. She was on an intravenous drip for 7 days, for heavy duty antibiotics, apart from rehydration.

With fluids in her, Rose was back to her normal sparky self after a day or so, and it was pretty hard for us to see her still hooked up to the drip. But we knew she needed the antibiotics just in case she did have this infection. The worst day of the admission was halfway through. Her intravenous line in a scalp vein (yes, scalp vein! It looked very drastic, and did little to reassure Lewis and Hannah when they visited!) had stopped working, and they had to spend a couple of hours unsuccessfully trying to find a new vein in Rose's tiny little body. She had about 15 separate "digs-around" in her hands, inner elbow, feet, head. This required 5 different medical staff. The fifth succeeded in getting a line in the back of her hand. He was evidently one of the senior anaesthetists in the Royal Children's Hospital (. . . bless anaesthetists, and their familiarity with veins!) Afterwards, the anaesthetist told Shane simply to request an anaesthetist if she ever needs this intervention again.

Of course, I was distraught while all this vein-hunting was going on, and little Rose was screaming in terror. Shane had to take over holding her after a while, as I was utterly useless to Rose, in the state I was in. She would have screamed for an hour and a half solid that day, while well-meaning medical folks dug around in search of an elusive vein. Yikes!! It was awful!

Anyhow, we're back home, and she's still behaving like a normal 9 week old baby, except that she's barely over her birth weight. Rose is not a typically chubby Coleman-Thomas baby!

We took her to her first liver clinic at the Royal Children's yesterday, and the dietician put her on a special supplementary formula containing fats that Rose can digest (it breaks my heart, but she can't use the long-chain fats in breastmilk). She's still on some breastmilk, because of the immunological benefits it offers (not to mention all the other good things about breastfeeding), but for fattening up, she needs this spiffy formula. She's also on lots of vitamins, and a couple of other medications. The specialist reckons that Rose has a long way to go before she's listed for transplant, because there's a lot they can offer her medically before she requires a new liver.

Of course, this is all pretty devastating when I think about it too closely. They shaved part of Rose's head the other day when they tried to get the intravenous line in, but didn't end up using the vein where they'd shaved her. So she has a really bad haircut, for no real reason, and I sometimes burst into tears when I look at it, because it reminds me of that day they tortured her. Rose on the other hand couldn't care less about such superficial matters, and the hair is already growing back over her bald area. I'm leaking from the eyes a hell of a lot these days, but Rose has other ideas about things, and spends a good deal of her waking time feeding and smiling.

Rose's radiant smiles are a very fine tonic for frazzled old me. I think she's trying to point out to me that there is much hope for a girl in her situation. They're getting better at liver transplants all the time, Australia has one of the highest success rates in the world, and the latest research news is that within 10 years they may be able to grow organs such as livers "in vivo", so that we don't have to wait for someone to die before Rose has access to a liver.

Anyhow, as our specialist says, we're not looking at transplant just yet. And she told us yesterday that she had a 10 year old patient who had had his transplant 2 weeks ago and is looking great, and about to return to school. Kids are very resilient, they say!

Sorry to go on and on, but some of you have had lots of questions, so I thought I'd just blurt this all out. Shane and I are very keen for information, as you can probably tell from the content of this email, and we're not at all touchy about people asking us questions about biliary atresia. So fire away if you want!

Thanks again for all your concern and love. Can't tell you how much it helps! Don't think we're ignoring you if you don't receive an immediate reply. Each email we receive is like gold."