Potty Patrol

We've received a lot of messages in the last few weeks about Zoë and how she is doing.  Well other than turning 3 years old, repeating Frozen lines and songs, and making her brother go crazy, she's doing well.  But.....she's still producing white and pale colored stools.   After we saw GI and started the probiotic, things seemed to be getting better for nearly a week.  When we went back to the hospital to visit her pediatric surgeon, she started back up with the white chalky stool.  We are in communication with both teams, her Pediatric Surgery team and her GI team.  Pediatric Surgery believes its her diet, that she's consuming too many bland and colorless foods and no fruits or vegetables.  GI used to think it was a gut infection, but now thinks its more of a function of bile excretion.  He does not think it has anything to do with her diet.  We see two of the top doctors in those departments and they both don't agree on the situation.   However, they both have assured me that they don't feel that this is an emergency situation and that as her liver panels, ultrasounds, x-rays all appear to be normal, that we shouldn't worry.  

How can we as parents not worry?  White stool is NOT NORMAL! If its not her liver and its not a gut infection, what is causing this?  Even if its a benign reason, there has to be an explanation.  After we left the NICU, we were told to watch out for black tarry stool and white stool.  These two (2) stools are big fat No No's with a duodenal atresia repair.

We are going in for more ultrasounds, hopefully next week.  I also scheduled a second opinion with another children's hospital.  We are just wanting to make sure we are doing everything possible.  We are just nervous that something is being missed and something detrimental could ultimately happen.   Its hard not to think the worst in this journey.   But other than her magical poop, she's acting totally normal (which is why the teams aren't worried at this point).

So in the upcoming month we are also adding Immunology to our team.  We hopefully can pinpoint as to why she gets chronic fevers of 101-103 every two weeks, but no other symptoms.  This has been an ongoing problem since she was born.  

Our lives are spent driving back and forth to the hospital.  My vacation days are not spent doing anything fun.  Although our journey has seemed to be easier than from 2011-2013, we're still getting a lot of unanswered questions.  

Here are some pictures from her 3 year old FROZEN birthday.  Her cake was done by Betty June's.  We love the baker and her husband!  They donated her 1st birthday cake from Icing Smiles.  I have hired her to do the kids birthdays ever since.  Not only are they amazing, they taste delicious.

As always, thanks for the support! xo