So It Begins

It's hard to believe our perfect little baby girl has a debilitating genetic disease.  For those wondering, there were no markers or signs of CF during pregnancy (I.e. echogenic bowel) or even once she was born (I.e. meconium ileus).  She is completely healthy looking on the outside.

Then we get a reality check.  I can handle the Doctor appointments and tests; it's the results that come back pointing to the CF effects wreaking havoc on her little body that hurt the most.  

Sienna has been eating great and it certainly feels like she is gaining weight and growing, so we were optimistic that her Pancreas was functioning alright.  During her first clinic visit, they took a sample of her poop (sorry for the less than eloquent term here!) in order to see if she was Pancreatic sufficient.  They ran two tests on the sample - the first measured the amount of fat and the second measured the pancreatic elastase.  We heard back about the fat levels about two weeks ago.  Levels were higher than they should be but her Pulmonologist and Nutritionist were not concerned at the time.  They said they would wait to see what the elastase test showed since it was more telling if she was PI (pancreatic insufficient.)  Today we found out that the results of her elastase test showed moderate levels of pancreatic elastase which means she is not absorbing her fat well and will likely need to start on enzymes.  We will discuss next steps at her next clinic appointment on Monday.

What I do know is that once she starts on enzymes, she will likely be on them for the rest of her life.  Enzymes come in the form of capsules and need to be taken before every meal.  While she's in infant, we will need to break them open and rub them on her gums.  That way they will get absorbed and broken down by the intestine.  PI is incredibly common for those with Cystic Fibrosis, especially those with her genetic mutation.

I know taking enzymes will just become part of our daily routine and there are far worse things associated with CF, but it still breaks my heart that this is now going to be our "normal."  

We will continue to learn and adapt as we fight the CF battle, but for now, I need some extra snuggle time with my little peanut!

Ready to snuggle after bath time!