This post was sponsored by Walgreens Cystic Fibrosis Services as part of an Influencer Activation for Influence Central. I received compensation as a thank you for my post.
The hardest thing about being the mom of a baby with Cystic Fibrosis is accepting that I can’t control everything that happens.
It is hard to look at my sweet boy and think of all of the terrible things that CF might do to him. As he sat playing with this book on Cystic Fibrosis that our clinic gave to us as a learning resource, I thought momentarily how it would be wonderful to stop time so that he would never experience the things written in it or be old enough to read it and fully understand the disease.
Though I can’t control the future and what might happen, I can control how I will react to all that CF will throw our way. I can control how much control we let CF have by letting our little guy fully enjoy life and do normal, fun kid stuff. I can control how we will fight CF by doing daily treatments, keeping physically active, and eating a healthy diet.
Cystic Fibrosis affects the digestive system by plugging it up with thick, sticky mucous. This makes it very difficult for the enzymes from the pancreas that are necessary for digestion to get to the small intestine and properly digest food. Most people with Cystic Fibrosis are Pancreatic Insufficient and need to eat over double the recommended calories of a normal person in order to maintain their weight. I’ve even heard from some adults with CF that they need to consume around 4000 calories per day!
It can be very difficult for some babies with CF to gain weight but that is just par for the course. My son is pancreatic insufficient and takes enzymes with any meal that contains protein and/or fat so that he can absorb the nutrients. Though he has grown nicely with breastmilk and starting solids, he has started to fall off his curve a little bit. His medical team and I have decided to be proactive and this means we have to play with how to get extra calories in to him. And it is no easy feat to do so in a baby who is getting too busy to sit still for meals.
If your child needs to get extra calories in to their diet then please check with their dietitian and medical team for the best way for you to do so.
Some of the ways we get extra calories & fat in:
- Fortifying bottles with breastmilk fat – I’m both an exclusive pumper and an overproducer so I have extra milk to be able to do this. I let a bottle of milk sit in the fridge until the fat separates to the top. Then I scoop the cream and add it to the bottle that I’m about to feed him.
- Provide healthy foods high in calories, fat, and/or protein
- Avocado – Mixes well with pureed fruits and meats.
- Eggs – Soft boiled yolks are yummy and scrambled eggs are a nice soft food to try when baby seems ready for chunks.
- Whole Milk Greek Yogurt – Great fat and protein content.
- Banana – Fun for baby to learn to self feed and very nutrient dense.
- Add extra fat and calories to low calorie favorites
- My son loves pureed fruits and organic oatmeal mixed with breastmilk for breakfast. But I can really up the fat content by adding 1 tsp of MCT oil. MCT oil is derived from coconuts and is great to add to cold foods since it is already in liquid form unlike coconut oil.
- For his meat and veggie purees adding olive oil is a tasteful way to add fat.
- Coconut oil is also a great option but because it is solid at room temperature it may not always work out with baby purees.
I’m so excited for him to really start exploring more with foods. I’ve started saving pins on Pinterest for healthy high calorie and high fat snacks that I can make for him as he grows up. Check them all out on my Pinterest!
For more information on Cystic Fibrosis including tips, medication info, and patient stories visit the Walgreen’s CF Champions: Navigating The Journey, Together website.
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