Pediatrician to Geneticist and every thing in between.. Part 2

I realized in my last post I didn't give an accurate time line of all these doctor appointments and running around we were doing.  Ava was born on November 20th.  All these appointments and runs to the hospital for testing all took place from that day until the first week of December.  Basically, Ava was 3 weeks old.

Also, not mentioned was the craziness happening with breastfeeding.  In between all the doctor appointments I was trying to get myself into the free lactation clinic held at the hospital we delivered at.  I remember specifically one day Jimmy and I were there asking questions and telling the lactation specialist some of the problems we were having and about Ava's jaundice.  She said 2 things that legitimately hit my soul and changed my mothering from that day forward. First, she explained to us that Ava was only going to be this age once and no matter what difficulties we were dealing with, find the happiness and love in being with her.  Second, I had told her the story of how painful it was for me to watch Ava's blood be taken and I had to leave the room.  She looked right at me and said, "You are her comfort.  You are all she knows.  It might be hard but she needs to smell you and feel you to know it's ok.  You can cry and be upset but be there."  I never left Ava's side again after that unless advised by the doctors.  I am forever grateful for that one day at the lactation clinic.

Lastly, Ava is also having weigh-ins every 2-3 days to see if her weight is changing.  This is along with every single weigh-in at every single doctor's office we go to.  

Ok, back to Ava's crazy doctor schedule.  After seeing the doctor that didn't take our insurance we were referred out to another Gastroenterologist.  This gentleman was smart but REALLY aggressive with is medical practice.  At our first appointment we went over issues we were having with weight, jaundice and supplementation.  We also went over her test results.  This is were everything starts to get pretty scary.

Dr. Johnson, we will call him, told us Ava's test results seem to be pointing to Biliary Atresia .  He explained that the when this happens Ava's liver can't get rid of anything.  It just stores up the junk (technical term) and will eventually lead to liver failure.  Our hearts literally dropped.  He was kind enough though to say this all with a smile on his face which made Jimmy want to Hulk Smash him.
He continued to explain it could be several other factor such as hereditary diseases but mostly focused on the Biliary Atresia.   He wanted to get more tests done.  This meant more blood tests and something called a HIDA scan .  He explained that the best way to know if it was in fact Biliary Atresia this scan would be the all knowing. With that, we scheduled appointments and I cried my eyes out in the car on the way home.

On December 13 we took Ava in for blood work at the lab.  I won't use the actually name of the facility but for this we will call it The Land of Unknowing. 

Ava was called in, I had my tissues and the Unknowing Nurse pricked our babies feet 3 separate times and did not successfully get any blood worth using.  I was crying my eyes out, she was crying her eyes out and Jimmy was trying to calm us both down. Finally another nurse came on duty and Ava was saved.  It took her 15 minutes and we were out of there.  By the time we got home Ava girl was all smiles and ready for her nap lol.  I on the hand was trying to make a voodoo doll of the first nurse to prick her heel 87 times.

On December 14 we had the HIDA scan.  Now, this was pretty intense as you can see from the photo.  Have you ever had to fast an infant?  It was AWFUL!  We were already having trouble with Ava's weight.  Now we were fasting her for 4 hours.  In infant world that's like a whole day.

We were in the room and an amazing nurse came in to give Ava an injection of dye that would travel through Ava's body.  This would let us know how the uptake and output of Ava's liver and gallbladder was.  We were introduced to this magical liquid called Sweetums.  This stuff works like morphine for the babes but it's just sugar water.  Ava didn't even realize she was getting an injection.  It filled my heart with so much happiness!  She was basically in a sugar coma while the test was going on.

Finally, the test finishes and we are excited to be done and go home.  The tech calls the office of the all might test readers, the Wizard of Oz if you will, and we are told they can't read the test properly and will need to try again.  WHAT! Our little lady has already fasted for 4 hours.  Now we needed to wait another 2 hours.  We had to let our baby not eat for 6 hours!  That's like a flippin week for her!

So we wait and I'm pacing and Jimmy again is our strength and talks me down.  We get called back in again.  No injection needed.  We go through the test which takes about 30 mins.  Wait for the tech to call the Wiz and we find out again they can't read it.  The tech was an angel and refused to keep fasting Ava.  She suggested that we go home and come back in the morning to run the same test again.  I wanted to hug her!

We got to feed Ava and we headed out for the night.  The rest of day we played catch up with Ava's feeding because of course, we had another weigh in for her in 2 days.

The next morning Ava and I show up, Jimmy had to work and thank goodness throughout all of this he is able to balance Daddy duty and Boss duty. 

We have the test run again.  The tech never says anything to me about whether the test was good or bad and just hands me the CD with the results.  I had an awful feeling it wasn't going to go well when we went to Dr. Johnson's office again.

To be continued.......  (I did add links on Biliary Aterisa and HIDA Scan for definition if you are interested)