Stats

A quick summary of Lincoln's current stats as a starting point...

On November 15th he weighed in at 10.2 oz and was 21.5 inches long.  He'll get weighed and measured again tomorrow (12/2/13).

November 15th was also his most recent bloodwork.  One of the main things they check is his bilirubin level, this measures his liver function.  The less bilirubin in his blood, the better his liver is working.  There are two types of bilirubin, direct and indirect.  Indirect is what causes most infant jaundice and can be treated with UV lights.  Lincoln's jaundice is caused by direct bilirubin, the worse of the two.
On the 15th Lincoln's direct bilirubin was at 5.4, up from his lowest of 4.2.  His next labs will be December 12th.  The doctor would like to see the bilirubin much lower.  He could probably maintain his health at levels around 2.  Zero is ideal.  If levels stay high then scarring (liver cirrhosis) could start, which means we'd have to start discussing a transplant at some point.

The first genetic tests actually came back negative for Alagille's.  This test was for the most easily found mutations of the Jagged1 gene.  The next round of testing, currently under way, will test the less easily found Jagged1 mutations and will also check the Notch2 gene.  Most people with Alagille's have the Jagged1 mutation, but 2-5% have the Notch mutation.  These results will be available anytime in the next few weeks/months, depending on how long the lab takes.

Lincoln's heart condition is called aortic stenosis.  This is the condition that I'm a little ashamed to say I understand the least.  But John understands it so we're covered.  His last echocardiogram and EKG showed that the condition is very mild and should only require occassional monitoring.  Our next echo and EKG are on December 13th to make sure that's still the case.
We also meet with the cardio geneticist in late December to discuss whether they agree that Lincoln may have Alagille's syndrome or whether it might be something else.

Lincoln's left kidney had an ultrasound in November, it still looks like it's holding fluid (the condition is called hydronephrosis).  His next kidney ultrasound is later this month and will determine whether we need to do additional testing to verify that fluid is actually backing up or if the kidney is just stretched out due to fluid retention while his kidney was still being formed.  If the kidney is holding fluid the doctor believes it is likely due to a blockage and can be fixed with a relatively common and successful surgery to remove the blockage.

That's where we are to date!  Next pediatrician appointment is tomorrow to check his growth and discuss any concerns.  One of our concerns is that Lincoln sleeps a lot and is sometimes lethargic so we'll get the pediatrician's thoughts on that.