Caring for Caroline: Enzymes

Caroline takes about 20 pills throughout the day.  These pills are called Creon and they are 'pancreatic enzymes.'  We open the capsules and pour the tiny enzyme beads onto a spoonful of applesauce or pears.  Caroline needs enzymes at every single meal for the rest of her life (or until a cure is for CF is found!).  If she doesn't take her enzymes she would get lots of really painful belly aches, not be able to gain weight or absorb vitamins and minerals from her food and could eventually become malnourished.  Enzymes are REALLY important for Caroline's lung health as well!  She needs those nutrients and weight to help her fight off infection and keep her lungs healthy.

Enzymes work by helping Caroline to:
- Digest carbohydrates, proteins and fats (the three nutrients in food that supply calories)
- Gain and maintain a healthy weight
- Absorb essential nutrients such as vitamins and minerals

When Caroline was born, she lost about 10% of her body weight before we left the hospital.  This isn't abnormal for babies but when we came home she was eating close to 25-30oz of breastmilk every day and was still having trouble getting back to her birthweight.  At the amount she was eating, she should have gained significantly more weight than she did those first two weeks.  Cystic Fibrosis was already affecting her body's ability to absorb nutrients and pull calories from food.  

This is a very common situation for CF babies.  Before the newborn screening, which has tested for CF since 2007, many children with CF would go undiagnosed for months and eventually be declared "failure to thrive" before someone would think to test them for CF.

That is how a girl I follow on Instagram @salty_yogi was diagnosed.  Read about her experience here.

At two weeks old, after she was diagnosed, Caroline started taking enzymes before every meal.    It was very odd at first, to give a two week old baby spoon fed food, but she did not choke or get confused as we thought she would.  It was also really emotionally difficult to give my two week old medicine.  It broke my heart to know she needed medication this young.  

However, within six hours of feeding her enzymes at every meal, Caroline stopped spitting up after she ate and within a couple days she had started to gain weight.  I quickly changed my perspective from "I have to give her medicine" to "I get to give her medicine."

By God's grace we are able to give this medication to Caroline and help her thrive despite this disease.  We are so thankful for the research, scientists, clinical research study patients and doctors who made this medication available for Caroline.

We are thankful beyond words for health insurance and programs like The Children with Medical Handicaps Program (BCMH) which helps us pay for this medication.  Without assistance it would be close to $1000 every month for Caroline to have these enzymes.

The first time I went to the pharmacy to pick up Caroline's prescription, it was $700 out of pocket because our insurance had not approved Caroline under our plan yet - she was only two weeks old.  Thankfully, I was able to pay out of pocket and receive the medication that day but I left the pharmacy in tears thinking about others parents, just like us, who are desperate to help their sick child, but unable to afford this medicine on the spot like I was.  I can't imagine.....

We are grateful. 

To learn more about Enzymes and CF: CFF Enzymes