The following was written by me, to tell Charlie's story, not only to see the path he has been down, but to help heal myself. It is written in third person, as I was trying to avoid judging myself.
Charlie is the 3rd child of a couple who has been married for 12 years. He was conceived prior to their 10th wedding anniversary, and was a surprise. Mom was in school, and both parents had planned no more children. Initially, his entry was met with surprise and fear, but as the parents had time to adjust, his development was met with increasing excitement and planning.
The pregnancy was difficult for mom. Early pregnancy had trepidation about a genetic problem, which was not brought to fruition. Mid-pregnancy brought sacro-ileac pain, and later pregnancy brought contractions and an irritable uterus. Late in the pregnancy, mom developed symptoms of candida, but did not know what it was. Mom was not allowed to return to school while still pregnant, and Charlie arrived 5 weeks early.
Initially, he had difficulty breathing, and was lacking a suck-swallow-breath reflex. Breathing alone was enough work. Early labor was slow, later labor was faster. He had a small dip in heart rate during delivery. He was 7 pounds even and dropped slightly more than a pound during his first couple of weeks of life. The first 2 weeks were marked by a bad yeast infection on his skin and mom's breasts that took diflucan and creams to clear up.
Breast feeding was nearly impossible, his first nourishment being from a bottle, he did not seem to understand what breasts were for. Mom pumped for him almost immediately, even though he was too sick to eat. Over the next few weeks mom worked diligently with several lactation consultants and at home with kangaroo care trying to get Charlie to nurse. Mom became sad and disappointed, and a medication coupled with her history of breast reduction caused her milk supply to plummet.
Over time, Charlie started showing symptoms of allergies to his formula that he was being supplemented with. Dairy didn't work, neither did lactose free, and partially hydrolyzed. Eventually, the demands of pump-feed the baby-wash bottles-kangaroo care-pump, school, the need for sleep, repeated very large and painful plugged ducts, the constant recolonization of yeast, and loss of supply led mom to discontinue pumping and dry her milk supply.
As Charlie got older, his parents could not afford enough formula to get through the month. This formula cost was more than $10 per day. They attempted soy formulas, then later soy milk, rice milk, and almond milk. Over time it became quite clear that he was reacting to all of these substances, and only would be comfortable and sleep when just his main formula was given. Solids were introduced around 6.5 months, mom was careful to watch for allergic responses, none were noted.
Finally, mom finished school and was allowed some time to work in his health. Currently he is getting a few sips of water kefir daily and probiotics in his formula. He also gets some nourishing infusions diluted by half with apple juice about every other day. He is dairy free(except for butter), soy free, almond free, and only gets a few bites here and there of whole rice, but not rice milk. He seems to also react to the food additive carrageenan. His favorite foods are eggs, applesauce, bananas, sweet potato fries, arrowroot cookies, canned peaches, steamed carrots, canned corn, and dried currants. Mom tries to introduce other proteins but he often spits them out. Currently he is taking 3 types of enzymes once a day.
After a recent visit with a feeding specialist, a consult with the nutritionist, and a pediatrician, his formula is being changed to an elemental formula for those children with severe food allergies, malabsorption, and eosinophilic esophangitis. It is planned in the near future that he will see a GI specialist and an allergist. There is a concern that he may have environmental allergies contributing to his problems. There is also a worry that he may have some malabsoption going on, and the desire to make sure he does not have eosinophilic esophangitis.
Mom knows that the road to healing is long. This path has taken 15 months, and it may take that long or longer to get back. However, she has some grief, and feels some responsibility for his health, despite the fact that she knows in her head she did the best she could at the time.
Physically, Charlie is doing well. He is meeting most of his developmental milestones. He doesn't have any obvious constant words, and exposure to one of his allergies will set him back a day or two. Despite that, he is a sturdy, loving, lovable, cheerful, busy fellow who enjoys nothing more than a climb on the dining room table with his favorite teddy and truck.