Eliza was conceived through IVF and up until the 29th week in her pregnancy everything appeared perfectly normal. Michelle then started to feel some pain as if the baby was pressing into her sternum and ribs. She was found to be suffering from a condition known as polyhydramnious (excess amniotic fluid). After several scans no one was able to pinpoint any cause of the condition and kept telling us not to worry (yeah right!). When Eliza arrived on 19 November 2003 at around 10.00pm at the Mater Hospital by caesarian delivery (putting mum through 10 hours of labour only to get stuck) we were initially told everything was all right, much to our relief. 12 hours later she was still very floppy and the doctors noticed that she was having trouble swallowing and that her saliva was pooling at the back of her throat making it difficult for her to breathe. At this point a Neurologist was called in to examine her and it was decided to move her to the Neonatal Intensive Care Unit at Royal North Shore Hospital for further observation. No obvious physical cause was found and our worst fears were being realised that it was something quite serious. Preliminary tests now show that she has a rare genetic muscle disease known as Nemaline Myopathy. While everything was happening with Eliza, Michelle also got quite ill and was in and out of hospital several times. After several weeks the doctors discovered a problem with her gall bladder which had to be removed. Getting Michelle well again was the first step in getting Eliza home from hospital and although we didn't know how affected she would be from the disease, we decided that she was better off at home with us than being stuck in hospital. As she started to show signs of improving we were able to bring her home during the day for a while and she was discharged from the hospital on 31 January 2004. Although she still remains quite weak, requires frequent suctioning and needs to be tube fed there have been good signs in her progress despite several setbacks. She has since been in hospital for a urinary tract infection for several days and we have also found out that she suffers from another condition known as renal reflux. Currently our lives revolve around visiting many specialists and therapists and trying to enjoy having Eliza in our lives. We know the next two years will be tough on our family, but if she keeps improving over this time her prospects and long term prognosis are good. She is an extremely happy and good natured baby and mostly a joy to be with. We hope that you will check in on us from time to time and follow Eliza's progress. Our Weblog has all the current updates and the full history to date.