Liver Biopsy Results

Yesterday afternoon the Gastro Interologist gave us the results of the liver biopsy. No biliary atresia :0) Instead She has Intraheptic Hypoplasia. So biliary atresia means the big bile duct from the liver to the intestines is blocked or too narrow- what she has means that there are too few small bile ducts inside the liver. Biliary Atresia means surgery right away and a liver transplant sometime during the life time. With the hypoplasia it will be a few years before we will know if she is going to have problems that will require a liver transplant. What we hope will happen is that as she gets older and her liver grows that the bile ducts inside of it will widen and better be able to create and distribute bile. If not it can cause cirrhosis of the liver and will need a transplant somewhere down the line. For now it means she is not able to digest food very well. Also she has the problem with her stomach emptying into her intestines so the plan is to slowly increase her nipple feedings (right now she is at 3cc/3hours) to try and get her to tolerate feedings in her stomach. She is also on the NJ feedings still until she can get up to full feeds by mouth. They are putting her on special easy to digest formula and adding special fats and vitamins to it in hopes that she will be able to absorb the nutrients she needs despite the lack of bile. The ideal situation would be her feeds by mouth would slowly increase till she gets to about 2/3 full feedings by mouth then she could come home with an NJ tube in place to make up for the rest of her feedings as we continue to increase the oral feedings here. She will most likely come home on oxygen as well. If she cant tolerate feedings in her stomach then she may have to have a surgery but we are trying not to think about that until we come to that point.