My daughter, Patricia, was born ill and needed emergency surgery 12 hours after birth. She spent her first month in the NICU. After bringing her home, we discovered she had an eating aversion and would vomit two to three times after each feeding. This was our introduction to the importance of nutrition and to teaching my child how to enjoy eating. We did not know she had cystic fibrosis until she was 14 months old.
Once during this time, the doctor said to have Patricia sit at the table with us and to let her choose whatever she wanted to eat. She picked up a dill pickle spear and sucked it dry! We were all shocked. From then on, she was given pickles whenever we ate together as family.
At 6 months old, Patricia had a G-tube inserted to help her grow. Her growth chart was flat and she was in the 20th percentile. It was hard to train her to like having her belly full! My son would entertain her while I added formula through her G-tube. We would sing songs and talk to her as entertainment to help keep the food in her little belly. It became a family effort to help Patricia enjoy the time when she was being fed. My husband did the evening feedings while I cooked dinner. We took turns feeding her at 2 am. Finally, at age one, Patricia had gained weight and was at 60% growth percentile.
When Patricia had a bad lung infection at 14 months, her doctor ran some tests to see if there was an underlying cause of the numerous lung infections she had endured during her first year of life. It was then that we found out she had CF. We were referred to the cystic fibrosis center in Columbia, Missouri and learned so much about good nutrition, why taking enzymes are important, and the relationship to lung health.
At 14 months, Patricia was eating solid foods and only ate what she saw us eat. We did not need to eat all the calories she needed, so I would make two meals. One for us and one for her (i.e. was full of calories, fat, protein) that looked alike. This was very challenging. At times her weight would plateau, so we would visit with a dietitian to help us. At one visit, the professional gave me many helpful hints, but they were so very time-consuming and expensive. I looked at the bottom line: the percentages of protein, fat, and carbs that was recommend for Patricia to eat. I then looked at the foods I normally cooked and found they met all the criteria with little adjustment. What a revelation and relief!
It was also very challenging to have only one income and mange buying all those groceries! I had to be creative. At times, it was impossible to get everything right. My children love being reminded of the time they ate a breakfast of homemade oatmeal raisin cookies, a glass of milk, and a glass of orange juice. They did get the recommended nutrition from oatmeal, eggs, flour, and raisins in their breakfast, just in a different form than the standard oatmeal cereal.
By the time she went to school, Patricia needed to consume 3,500 calories a day. How in the world was I supposed to fit all that food into my little girl? She ate crackers and drank milk after waking up, and -- after her chest therapy -- on the way to school, she drank a weight-gain shake. Lunch was eaten at school and the school’s nurse kept supplemental snacks in her office and offered them to Patricia since she went there at least once a day for a breathing treatment. She had a snack when she got home from school, ate dinner with the family, and usually had another snack before bed. Keeping all this food healthy was a challenge. Similar to serving oatmeal cookies for breakfast, we gave her other pre-made foods, such as Hot Pockets®, chips, and Lunchables®.
I did the best I could with what I had, and Patricia gained weight! And, I gained weight, too! She also developed a love of eating that persists to this day. As a 30-year-old married woman, Patricia now plans her meals and makes healthy choices, knowing it helps her do the things she loves.
I would be remiss if I did not add that this journey took us all by surprise and added great strain to our lives. If it was not for my faith in Jesus, I would not have made it very far. I learned to lean on Him for insights and the wisdom I did not have. Many times, He guided me to choices that helped in Patricia’s nutrition and to overcome her eating aversion. Without faith this story would have been very different.
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