The majority of our friends had not heard about cystic fibrosis prior to our diagnosis, so naturally we get asked all the time what our routine looks like with Baby J. Fortunately for an infant the routine isn’t too crazy. We have also been blessed that JJ is relatively healthy so we have not had to use any new medications or had any prolonged hospital visits to date.
Daily Routine 0-7 months
Pancreatic Enzymes: Prior to each feeding (or snack) we break open capsules of Pancrelipase and pour it into a little applesauce. We spoon feed this to JJ before he eats to help him breakdown and absorb the nutrients in his meal.
Vitamin K: 2.5mg (only on Mondays, Wednesdays, and Fridays)
ADEK (with Zinc) liquid vitamin- 1ml
Salt- we use 1/8 teaspoon of Pink Himalayan Salt. This is used throughout the day, we add it to the applesauce mixture or to any of his solid foods.
Probiotic- currently using Baby’s Jarro-Dophilus
Airway Clearance Therapy
Two Total Treatments Daily: 1) Albuterol mist with spacer device, 2) Positive Expiratory Pressure (PEP) Device with Mask- 15 breaths and 3) Three or four sets of “huffing”.
TummyGize- to help support healthy digestion and regular bowel movements
R.C.- to support healthy respiratory function
Thieves- to support healthy immune system
We also try to give Baby J a moderate amount of time in his Jolly Jumper. Not only does he love it, but it is a wonderful form of exercise for infants.
JJ was exclusively breast fed until he was about six months and did wonderful. His weight:height percentage began to drop fairy rapidly for unknown reasons around his sixth month birthday. We tried many things but ultimately decided to begin supplementing with formula. On days that I am at work we add 2 teaspoons of formula to a 7-8oz bottle of breast milk. This increases the calories of his bottles. We also give him roughly 6-8ounces of formula made milk in the evenings after breastfeeding. This fills him up to last the entire night and increases his milk volume for the day.
Fortunately he is now gaining weight again due to these two changes! We use Baby’s Only Organic Formula. We also add high quality butter to his solid meals- these usually consist of homemade pureed yams, acorn squash, butternut squash, avocado, banana, or scrambled egg yolk. As he gets older we find new foods to throw into the mix.
Prayer & Positive Thoughts
I am still learning to do these but there are numerous studies that show the power positive thinking has on our physical health. The bible even speaks to the power of our mental state:
“If you have faith as [small as] a mustard seed, you will say to this mountain, ‘move from here to there’ and it will move; and nothing will be impossible for you. However, this kind does not go out except by prayer and fasting.”
Matthew 17:20,21 (NKJV)
As Baby J gets older we would like to add fermented cod liver oil for Omega-3’s, Vitamin A and D (plus all the anti-inflammatory benefits). Take Epsom Salt baths to aid with magnesium absorption (and much more). As well as add some more supplements such as Young Living awesome children’s vitamin, MightyVites.
❤ We love our Baby J.