April 29, 2010 (167 days old)

Hello everyone,

Sorry we haven't blogged in a little while. I've been really stressed.
The good news is that TanaLee is responding to any treatment the doctors do for her. Here's the bad news, I found out yesterday that TanaLee's ranking on the liver transplant list is normally for someone who has less then 7 days to live. Thankfully she has surpassed that amount of days but it just goes to show that her time is extremely limited without a new liver. :( :::::

Then here is the whopper of bad news. They have officially diagnosed her with a syndrome that Jeremy & I will leave un-named for now because we want to learn more about the facts of the syndrome and the severity of it in her. The good side to this is that the syndrome is why her liver failed so they have a cause for all of this and that once she gets a new liver the process of failure will not return.
Also Jeremy and I didn't pass it on to her but her gene mutated and it was a fluke thing. Doctors have told us that this type of thing could happen to 1 in 100 million babies. So in other words it is rare and they said the likely hood of this happening to us again with another baby is almost zero. We are reassured with that news but we currently don't want more babies until TanaLee is better...don't worry we wont do anything without an educated answer to having more kids.

Okay some other things going on with Tanalee is that she has been Bradycartic ( when her heart rate lowers and oxygen lowers) She slips down but comes back up its just that she's much more irritated the last few days. The doctors started some Benadryl because they think her skin is itchy which can be related to her jaundice. Her belly size is also alot bigger. The doctors are going to try lasiks and see if they can pull out some of that fluid off but if not they may decide to do an emergancy belly tap with a needle to get fluid off.

Some more GOOD news: TanaLee got an eye exam yesterday and from the looks of things her left eye is in good shape and although her right eye will never be currected in this system of things it too has started to resolve itself and there is no active bleeding on her eyes.

We will be meeting with a genetics team to get more info on the sydrome and what it will mean for TanaLee's future either today or tomarrow or whenever they make a time for us to meet.

That is about all I can think of for what the latest is..until we blog again ( I will try and upload some new pictures when I can)