January 3rd, CF nutrition

I guess I'll start today off with my first CF post. It has been about two years since we got Jude's diagnosis. I have to say that we were all shocked. No one knew that there were any carriers in the family, much less that both Jason and I carried this disease. We spent a lot of time educating ourselves and our families about CF and learning about what would be our new way of life.

So far the only hurdle we've had with Jude's CF is his nutrition and weight gain so I think I'll focus on that for today. We spent the first two weeks of Jude's life thinking that I wasn't producing enough milk to feed my baby. Despite him having the 10-12 wet and 5-6 poopy diapers a day, he always seemed to be hungry. I saw two different lactation consultants and a couple of midwives, each one who thought we were doing a great job and no one could understand why he continued to lose weight. When he was almost two weeks old we got the call from our family doctor that Jude's newborn screening came back positive for Cystic Fibrosis. While we were stunned, we finally had our answer as to why he was losing weight. CF affects mainly the lungs and the digestive system. Jude's body is full of thick mucous that is hard to move. In the lungs, it's hard to cough out. In the pancreas, it clogs the ducts that release your digestive enzymes. Because of this, people with CF who are pancreatic insufficient (like Jude and most CFers) cannot break down and digest fats or fat soluble vitamins. They just pass it on through creating upset stomachs and greasy stools (sorry if that was TMI, but I felt it important). Fortunately, there are pancreatic enzyme supplements available for people who need them. Jude takes these pills every time he eats. They don't work as well as your own digestive enzymes but they sure do help. With the help of this drug, Jude has been able to gain weight. He is still quite small at 32 inches and 25 pounds (two years old), but he is solid muscle and a ball of energy.

We do the best we can to make sure his diet is full of high fat and high sodium foods (sounds like a dream for many of us who struggle with our weight). My biggest struggle here is trying to find HEALTY foods that are high in fat and salt. Fortunately, Jude LOVES to eat. If you gave him an apple and a cookie, he'd pick the apple every time but we try to find a nice balance for him. In the picture above he is having tonight's dinner. Turkey and hashbrowns (cooked in butter and salt). Hashbrowns are one of his favorite foods and we get them from Trader Joe's so I know they are an OK choice for him. He also likes his turkey rolled up and cut into pinwheels (just like they do the samples at the grocery store). He's pretty particular about some things. I am thankful that he's a good eater. A lot of kids with CF have feeding tubes to help them gain weight and we are so grateful that Jude doesn't need one (at least not now). I still struggle with his eating as it is so different from what I originally intended my children's diets to be like, but if having Jude has taught me anything, it's that we have to adjust our ideals in order to fit each child. I'm not looking forward to explaining to Violet why Jude has to eat fatty food while she has to be more careful. I guess I'll cross that bridge when we get there.