this biliary atresia experience

EXCERPT FROM MY EMAIL TO SHANE AT WORK I'm getting worried. "Rose is still in heaps of pain intermittently. She's barely slept because of it - it keeps waking her up."

EXCERPT FROM EMAIL TO A RELATIVE “Rose has bloody well got . . . an inguinal hernia . It's a freaky bubble of fluid that bulges out . . . when she cries. She has to have more surgery! Hopefully it'll be done as a day procedure. Not sure when, but I hope it'll be soon, as it makes the whole family quite queasy to see it! Rose also has an umbilical hernia , but evidently that doesn't necessarily need surgery, as it sometimes resolves when the child grows. And her liver specialist reckons she might have reflux too, so she has to take an extra medicine on top of her usual 7 other doses of stuff each day. She hates the reflux med, and practically chokes each time, to the extent that I wonder whether it's better just to let her cope with reflux! To top off her current list of baby hassles, she's getting her next round of immunizations on Monday. And they reckon babies have it easy! The good news is that her specialist says she's doing extremely well from a biliary...

EXCERPT FROM EMAIL TO FRIEND IN THE UK This is again my Australian friend living in the UK whose baby girl is just 10 days older than Rose. "It's been too long since I've written - I've wanted to every day, but oh my goodness, Rose has been very rascally lately! She wants me me me, and only me, and has decided she doesn't like drinking from the bottle after all, thanks very much! Unless she's fast asleep, that is - so we sneak it into her while we can. It's very inconvenient though, and life when she was happily feeding in the arms of Shane, Lewis, or any other close relative was so much easier! . ."

EXCERPT FROM EMAIL TO FRIENDS These good friends live in our street, and we used to spend several mealtimes each week with them before Rose became ill. Now we are managing to do that far less frequently, and our dining relationship continues more indirectly, via their drops of meals and snacks on our front verandah. "What a lovely surprise yesterday to receive the enormous slab of cake and the precious rhubarb. I was in my bedroom trying to sneak a bottle of formula into Rose while she slept, when I heard some mysterious rustling and footsteps and faint children's voices on the front porch. Sorry I didn't come out, but Rose won't drink her formula if she's awake, the little blighter!"

EXCERPT FROM EMAIL TO A RELATIVE I've been trying to arrange a good time for Rose's doting older cousin to visit. My description of the after-school time as Rose's fussiest time of day is a reminder to me of how generally unhappy our baby has been lately. . . "Rose's most antisocial time of day is that period between after school and the kids' bedtime! . . Rose has been particularly irritable lately, and generally won't sit to be cuddled by anyone but me! Sometimes even I'm not good enough either! A friend dropped in last week, and he had to follow me around while I paced with squawking Rose." Poor little girl - the truth, when I really think about it, is that she's miserable most of the time.

EXCERPT FROM EMAIL TO FRIEND Our close friend, a father of three, made a special effort to drop in on us in the late afternoon recently. Rose was at the time irritable and clingy, needing to snuggle in to me and deservedly receive my attention. I had trouble juggling the competing demands: the instinct to just settle down quietly with Rose for a long, slow feed, and the desire to chat with this old friend. . . "I felt like I wasn't holding up my end of conversation the other day, with little Rose wriggling and fussing - I find that quite distracting when i'm trying to talk! Anyhow, the baby stage passes in a flash, and one day we'll get to chat in more relaxed circumstances again, preferably with some burnt sausages and a glass of vino. . . The good news on Rose is that she got a really good report from her liver specialist yesterday, who reckons Rose looks terrific. And she has prescribed some medication for gastric reflux - she reckons that could be why Rose has bee...

EXCERPT FROM EMAIL TO ROSE'S DIETICIAN AT THE HOSPITAL To provide some context, the special formula Rose has been prescribed tastes TERRIBLE! She needs it because it is difficult for her to absorb the fats present in breastmilk and more conventional formulas. We've tasted it, and are amazed that she had been drinking it so happily, but now. . . "After all this talk about how well Rose is doing on the formula, she yesterday began to fuss about taking the Pepti Junior, totally refusing it after the middle of the day. Today she has only taken 65ml of it first thing in the morning, and baulked at the lunchtime feed. On the other hand, she's crazy about the breast, and is playing with her hands, talking, and generally having a ball when breastfeeding. I wonder whether she's simply enjoying the tactile and social aspects of breastfeeding at the moment, and asserting a preference for it as a more enjoyable activity. Or, is she saying she no longer likes the Pepti Junior a...