On November 21, 2009, at 6:54pm, we welcomed 6lb. 9oz. 19" Claire into the world and our family. She is the wonderful completion of our family.
But things haven't been easy for her or us.
Claire has elevated conjugated (direct) bilirubin and elevated AST, ALT and alkaline phosphate liver enzymes. Each was headed down since Claire was born but now they're on their way back up. Lots of blood tests (many with blown veins), two ultrasounds, urine tests, a negative HIDA scan and a trip to Ann Arbor later and much our our family's future hinges on the results of another repeat liver panel on Monday. If her levels have not gone down, we're likely looking at admission into the hospital on Tuesday for a liver biopsy on Wednesday. If the biopsy shows positive signs of biliary atresia, Claire will have cholangiogram and likely the Kasai procedure by the end of next week (it has to be done by eight weeks of age). Ultimately, this could all potentially end up with Claire needing a liver transplant some time relatively early in her life. This is all "worst case scenario", but it's our potential reality and we need to be prepared. There is a chance that it's something other than biliary atresia. The hope right now is that this is the case for Claire.
Our family has been through a lot with this. It's really been hard on Brian and I emotionally. We're scared for Claire and we're worried about how all of this affects the other kids. We are hoping and praying for the best but preparing for the worst. We're extremely grateful to the network of family, friends and prayer warriors we've been surrounded by the last seven weeks. We are really realizing how blessed we are with support when it's really needed.
As you have probably figured out by now, a big part of the reason for this blog is to keep track of what's going on with Claire. I'm also hoping that through all of this, we can be a source of information or comfort for other families going through what we're going through. I've done a lot of research online since this all started and, while there is a lot of medical/technical information, there isn't a lot of personal, relatable experience.
But things haven't been easy for her or us.
Claire has elevated conjugated (direct) bilirubin and elevated AST, ALT and alkaline phosphate liver enzymes. Each was headed down since Claire was born but now they're on their way back up. Lots of blood tests (many with blown veins), two ultrasounds, urine tests, a negative HIDA scan and a trip to Ann Arbor later and much our our family's future hinges on the results of another repeat liver panel on Monday. If her levels have not gone down, we're likely looking at admission into the hospital on Tuesday for a liver biopsy on Wednesday. If the biopsy shows positive signs of biliary atresia, Claire will have cholangiogram and likely the Kasai procedure by the end of next week (it has to be done by eight weeks of age). Ultimately, this could all potentially end up with Claire needing a liver transplant some time relatively early in her life. This is all "worst case scenario", but it's our potential reality and we need to be prepared. There is a chance that it's something other than biliary atresia. The hope right now is that this is the case for Claire.
Our family has been through a lot with this. It's really been hard on Brian and I emotionally. We're scared for Claire and we're worried about how all of this affects the other kids. We are hoping and praying for the best but preparing for the worst. We're extremely grateful to the network of family, friends and prayer warriors we've been surrounded by the last seven weeks. We are really realizing how blessed we are with support when it's really needed.
As you have probably figured out by now, a big part of the reason for this blog is to keep track of what's going on with Claire. I'm also hoping that through all of this, we can be a source of information or comfort for other families going through what we're going through. I've done a lot of research online since this all started and, while there is a lot of medical/technical information, there isn't a lot of personal, relatable experience.
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