From Thomas' Mum 28/12/08

Hello everyone,

It has been 2 weeks since I last wrote, I hope you all had a very merry Christmas. School holidays are here and lots of services have closed at the Hospital for the Holidays. The area that the computers are located in the hospital is closed for another 10 days so I am sending this email from home. We came home for the afternoon to do a couple of things and see if the house is still standing.

We have had some very good news. The last Echocardiogram showed that Thomas has nearly normal pressures in the arteries going to his lungs. Praise God that the Pulmonary Hypertension is now under control. All our prayers have been answered. The Sildenafil will still continue for now. Thomas is on a very high dose (about double) but the doctors dont want to drop it just yet. This means that Thomas's heart isn't pushing so hard anymore to get his blood oxygenated.

Thomas is doing well, considering everything that is going on. He is nearly finished his Antibiotics (for the Meningitis), that course is due to end on new years day. The IV line seems to have settled in nicely and is working well. The doctors are still slowly weaning down his morphine, now its down to 0.21, which is only 21% of his dose from last month. Also the pressure on Thomas's CPAP is being weaned down, we are on 7 now, tomorrow they are putting it down to 6.
Thomas seems to have recovered from the Diarrhea, it seems to have been a feed intolerance. We have switched to a different Formula called Alfare. He lost some weight when we switched his feed as the Alfare formula has less calories than Monagen. His weight dropped from 5.31kg to 5.010kg in 6 days! The volume of his feed has now been increased and he is now back to 5.190kg. My milk supply had almost disappeared due to lack of motivation on my behalf. I have been spending the last week carefully encouraging my supply to increase and I am doing really well, I have almost filled a bottle today!

Other things that have happened since I last wrote.... Thomas had a blood transfusion on Friday 14th Dec as his Haemaglobin dropped to 7.7, it came up nicely to 12.6 after thge blood. Often sick babies need to get a transfusion because they are not able to produce enough of their own red blood cells.

We spent Christmas day at the hospital. Santa came in a convoy of 10 Firetrucks, with lights and sirens! No trying to sneak around and get down chimneys. There were lots of volunteers singing and giving gifts, I am told Guy Sebastian was there with Kate Cebrano but we didn't see either of them. Thomas got at least 4 presents and Rowan got lots too. We had lunch at Ronald McDonald House and we are still eating the leftovers. Thanks for your Christmas cards, I got to read them today.

I will sign off there. Dean is finishing work soon and we are heading back to the hospital tonight.

I hope you all have a safe new year,

Lots of love from all of us to all of you,

Julie Dean Rowan and Thomas..