Omegaven day 1

Sorry for the lack of updates recently. It has been a rough month. Molly has been fighting her infections and recovering from them. Currently she is being weaned off the paralytic, on fentanyl, versed, methadone, and valium, and on 20 ppm of nitric oxide. She was supposed to have started the omegaven last Friday, but of course we hit a snag. This drug has been the hardest thing to get. And that is so sad. So many babies can benefit from it and yet the parents (not the doctors) have to fight for their baby to get it to save their baby's life. I need to give props to my sister Nicole for writing a letter to the head honcho of the hospital. Without that letter, we would be waiting another 2 weeks of valuable time to start the omegaven.

Molly is stable at this time. We were given a grim prognosis yesterday. Her lungs are getting worse because of the pressure from her belly which is full of fluid, or ascites. Her heart is working overtime to compensate for the pressure in her portal vein. In my opinion, the cause of all of her problems is the liver. Omegaven has to work. We have no other options. We need as many prayers as we can get that omegaven is the answer we have been looking for. It is not a miracle pill in that it doesn't work overnight. It will be at least a month before we start seeing any improvement. In fact, her numbers will get worse before they get better. We also need prayers that she stays infection-free. I don't know if her little body can handle another infection. I don't want to find out either.

Please pray for the omegaven to work and that she stays infection-free. These things have to happen so that one day we can take our peanut home.

I know that probably nobody knows what these numbers mean, but I am putting them here for reference. They are Molly's pre-omegaven numbers.

Total bili: 23.0
Direct bili: 15.7 (normal is <2.0)
Liver enzymes:
      ALT - 146 (normal is around 50)
      AST - 138 (normal is around 50)
      Alkaline phosphotase: 163 (currently     in normal range)
Albumin  - 3.9
Platelets - 29,000 (very very low - normal is > 150,000)

These are just some of the numbers we will continue to monitor on the omegaven. The most important one that we will watch is that direct bili. It's a good indicator of her liver function.