Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Thursday, May 19, 2011
His homemade formula has ~20-22cal/oz (by my calculations it is 21cal so I average it between 20-22cal). Over the past week, he has taken in an average of 1450calories/day- some days in the 1200's but a few days even taking over 1500calories/day! At his current weight, he needs around 1100 calories/day to maintain and grow, adding in a few hundred calories for extra growth....which is just what he is doing! Every time we turn around, he is getting fussy and asking "bottle?" again- every 45-90minutes he is taking a 4-6oz. bottle! We have barely been able to run errands or do anything in this short amount of time between bottles. But I am happy to stay home, keep his formula cold until it needs to be warmed up and then snuggle in for a bottle every.single.time he asks- especially if this gets us back the almost 2# of weight he lost recently. Weight that we worked so hard for, taking 2-3weeks of concentrating my time and efforts to make sure he is encouraged to eat every 2hrs, to sleep next to him so I could get him a bottle right away- so he could take in the 300-400 extra calories he takes in at night. It paid off and he gained weight, and was doing well....until we started to spiral.....
A weight check last week revealed no weight gain, and a few grams of a loss. Too early to tell, we weighed in again this week.....we regained those few grams but it doesn't seem to match his extra caloric intakes. We will weigh in again next week before we start to worry but he does seem to be absorbing those calories and he does look like he's gaining and getting good nutrition. His cheeks seem to be filling out and getting some more color from the past weeks post-reaction pale. For now, we'll revel in the positives and continue to take it one day at a time.