The beginning

Wow  where to begin. I guess at the beginning.  Berkley was born July 18 2011.  Everything went great. Even my pregnancy was relatively normal.  At 24 hours we tested her billirubin just like they do with every baby, B's was high. I wanna say 10 maybe. (Total Bili) Well I talked to Dr. into letting us take her home but on the lights. I Promised that we wouldn't cheat and would keep her on there all the time, But Shay was leaving soon and I wanted us to be home. 
I think it was our 2 day check up so her third bilirubin test, Dr. N mentioned that it was still high, and he also noticed that her conjugated was high as well as her unconjugated. He said to do what we were doing, and we would watch it.
   
By our next visit, Dr. N  had already been in contact with the liver doc's at Primary Children's (PCMC)
He listed a few possibilities that it could be, one of them Biliary Atresia.  From the very beginning he was leaning towards this.  We had an ULT done here in town, but we knew from the beginning that it was a long shot because what we were looking for, a tech here in town would probably never see in their career.
it was inconclusive so Dr. N said he thought it was best if we went up north to PCMC where they have a bit more experience.  I wasn't as much worried as I was relieved.  I felt like what ever we were doing was not working and we needed to try something else, I desperatly needed answers. So that day we left town. B, my mom, and I.
  
We got to PCMC's ER at midnight on Aug 4th/5th 2011.  B was admitted for FTT and Jaundice. We met so many different doctors and had SO many different tests done.  I do have to say that through the whirl wind of it all I always felt very at peace.  I think a lot of that is in thanks to Dr N he did a great job preparing me, he knew just what they were going to do.  He prepared me for all the annoying and scary things people would say, and do.  He told me about the TEAMS of doctors that would constantly be in and out.  He warned me that people were going to have a major reaction to her coloring, but to remember that they had not met her dad and while she is dark, some of that beautiful skin tone was from him.  (its got to be alarming when they see me, this see through white mother, with this dark baby that has liver failure, of course they freak out.)  And he was right people did.

Even with all this scary new information we were getting I felt OK, I felt very well prepared, and very comforted.  I am so thankful for the family support I have.  The Blessings B and I were given, and the prayers on our behave, were a huge comfort.
 Biliary Atresia is a bit hard to diagnose. Its pretty much done by ruling everything else out.  Which we began to do.  We tested for allegelle syndrome, a genetic disorder.  Infections, Hepatitis, basically anything else you can think of.  We did SO MUCH blood work, and multiple imaging tests.  We found out she has no gallbladder and no sign of any bile ducts. We came to the conclusion that it must be Biliary Atresia.

 During all this mind you my husband is in Baghdad.  Up until this point we had been able to talk on the phone, but it just so happened that the day before we came up North, is when we lost the ability to communicate.  (that was awesome) So by the time I got to talk to him, So much had happened and so much information had been thrown at me.  I did my best to keep him updated, at the same time trying to keep a positive spin on everything, that was the last thing he needed right now was to be worried and distracted.  He was mad. I think just mad at the whole situation. I cant imagine what it was like to have to hear all this from so far away.  Yes it was scary for me but I had doctors here telling me, "yes this is what will go wrong... but this is what we can do about it" I had a reliable resource. and the ability to get all  my questions answered. he however, had my recap, and  THE INTERNET! (bad combo)
  Well during this visit I met Dr J. Thank heavens for Dr J.  He helped me understand the plan, he answered every question, he has held my hand through everything, and has been so assessable.  He is and amazing Dr.

The next step is for B to get a Kasai Procedure done.( they would take a portion of her intestine and connect it to the liver,to allow the bile to drain.) The Kasai must be done by 60 days old.  Luckily because Dr N was so on top of everything, we were able to come home and let B get bigger.  Dr J's orders were just to go home and just "enjoy her" ( I'm crying now even writing this because it was all wanted to do )
Those stupid lights we had been on at home were in the way!  I only took B off to eat, bathe, and change her.  All I wanted was to hold my baby, she was almost a month old and we just wanted to cuddle!

On August 22nd we were admitted, B had a liver biopsy on the 23rd, and the Kasai done on the 25th.
The plan for surgery was to do a Colangiogram and then the Kasai  When we got in there, they had no need for the Colangiogram because there indeed was no Gallbladder.  They did see scar tracks from where it, and the Common bile duct, had possible once been.  While in there they also discovered that her bowles were malrotated, so they were able to fix that and remove her appendix (to prevent future complications.) <on a random side note I had that exact LADDS/Apendectomty procedure done 13 months prior. A weird coincidence that is not related.> 
Surgery went great and she recovered beautifully, we were even D/C 3 days early!

The next step is to wait ( the story of our lives! )  The plan is to monitor Billirubin levels, and give it 3 months to decided if the surgery is a success or not. 

While we are waiting and watching B is still not gaining weight.  She is a HORRIBLE HORRIBLE puker, on top of the fact that she wont eat much to begin with.  At this point she is getting 18 syringes of medicine a day!  that alone I'm sure fills her up. ( I have always said that I have been able to Handel the liver failure but the reflux ,or what ever you want to blame this rotten puking on, is to much I HATE IT)

On Oct 15th 2011 We get admitted to PCMC again to place an NG tube.  While we were there we got her whole work up done to get her placed on the transplant list.

Nothing really changed, still puking, not really gaining weight. (Shay was able to come home which was AMAZING) but we were still just plugging along.  B has always been a very happy baby.  Like abnormally happy. She is so content and SO forgiving.  If there wasn't people telling you she was sick you would never know (OK minus the yellow skin, and SUPER yellow eyes, and the fact that she is so little)  But she never ever has complained.  She is such a well mannered patient baby.

We hit the 3 month mark and have had no significant change, thus terming it a "Failed Kasai" (that's quite the bummer)
Well we knew from the beginning that the Kasai was just a "Band-aid"  it was just a temporary fix to B's underlying problem.  She eventually will need an new liver.


We continue to go back up north about every 2-3 weeks to see Dr J.  we have weekly bloodwork, and Weekly weight checks at Dr N's office.

We did one last ditch effort test to see if it could possibly be the Allegelle syndrome, before she was officially listed.  3 weeks later that came back negative. 

On March 7th 2012 we got admitted again to get a PICC line placed, and start her on TPN.  The NG tube, while helping to get her to eat more, does not help when she can just throw it all up!
That went good she was only under for like 10 min, we stayed 2 nights to get her TPN "recipe" figured out. on  MARCH 8th 2012 we officially listed her with UNOS.

In January her Bili randomly started coming down.  So far down that she hardly shows and Jaundice.  Her levels on 4/16/12  5.3 I believe the lowest its ever been.  random and no one can explain why.  On the flip side her liver is now more palpable, and becoming more sclerosed. and as of last week 4/23/12 Dr. J can now  feel her Pancreas as well.  So on one hand things are looking better but on the other they are not.  This girl has been far from "textbook" from the beginning.  Shes doing well. Super happy, and developmentally right on cue!

Well that's a "Quick" recap of the last nine months. Right now we wait!  I hope to be much better with the updates in the future.