Francesca was born on December 28, 2007 at five pounds, eight ounces with a full head of hair and stunning blue eyes. She was seemingly very healthy. As a newborn, she was easy-going, loving, and unusually agreeable, so we were shocked when we noticed blood in her stool around twelve weeks old.
She had gained weight at a slow, but average rate and was still on the growth chart. I was breast-feeding and the pediatrician advised that I eliminate dairy from my diet. I accepted the sacrifice and gave up my love of cheese for Francesca. The bleeding did not resolve. We were referred to a pediatric gastroenterologist specialist, who suggested that I eliminate dairy, wheat, soy, eggs and nuts. The bleeding continued (and I lost weight). I tried to take a special enzyme to help break down the proteins in the milk before feeding Francesca. And, still she bled. At six months, an upper and lower endoscopy revealed that Francesca had colitis (sores in her colon that kept bursting causing the blood that we saw), a milk protein intolerance (that had down regulated her immune system and caused her to be unable to process large proteins) and GERD (severe acid reflux that was silent with no visible symptoms). She was also treated for a c.diff infection with antibiotics, twice. Because of these struggles, Francesca was labeled “failure to thrive,” a diagnosis that every parent dreads, fraught with fear, guilt, sadness, and few medical answers.
Reluctantly, I accepted the fact that I had to prematurely quit breast-feeding, and we transitioned to an expensive (and not covered by insurance!) amino acid based formula. Francesca had never had a bottle and the formula made her miserable and constipated. Without having had a single positive experience with food, Francesca shut down orally and stopped eating almost entirely. Every day was a scare. We lived in fear that Francesca would not eat enough to stay hydrated and it was obvious that she was not eating enough to grow. I remember the day that our doctor first talked about “supplemental feedings”. The idea was so foreign and unnatural. To be perfectly honest, I don’t think that I really comprehended what she was talking about and how much it would eventually consume every waking and sleeping moment of the next year of our lives.
We spent three months hoping, begging, pleading, and crying just to get Francesca to take twelve ounces in a twenty-four hour period. Each day, we woke with a new strategy and the hope that it would be the day that she would eat without a fight. She had better days and worse, but never good. She only ever ate enough to eliminate the edge of her hunger. She plummeted farther from the normal growth chart. She wore out her baby clothes. She was stubborn and determined, figuring out every possible way to avoid eating. The doctors all agreed that we were at the point where malnutrition would start affecting her brain and lung development. After much research, many second opinions, a million different strategies, and endless worry, we felt we had no other option other than to put her through an invasive surgery to insert a g-tube (PEG) just before her first birthday.
Francesca weighed twelve pounds before the surgery and eleven pounds after our four-day inpatient stay. We watched our daughter fight, with a permanent tube attached to her stomach, medicated on a morphine drip, and terrified of the unknown. I slept in the hospital bed with Francesca every night, connecting with her as she processed her new circumstances, a complete violation of her civil rights.
In some ways, we are eternally grateful for the medical technology to help Francesca thrive on a feeding tube, and in other ways it was the beginning of many heart-breaking and terrifying complications. In the last year, Francesca has thrown-up multiple times every day. Our normal lives have revolved around feedings every four hours around the clock, mopping up vomit, and several loads of laundry a day. It has been a constant balance of how to maximize the calories we can get into and keep in Francesca. We have had three to four doctor and therapy appointments a week. Francesca has survived the trauma of three surgeries, an episode of anaphylactic shock, an ambulance ride, several ER visits, and myriad doctor consultations with every pediatric sub-specialty. She is strong, determined, and amazing.
We have fought for Francesca and she is finally on the normal growth chart at the fifth percentile for weight. This milestone might be the biggest accomplishment in her life and the lives of both of her parents. And, it brings us to our next challenge: how to wean a stubborn, bright, 100% tube dependent two-year old.
Despite the many moments of sheer terror, the endless frustrations of tube feeding, and the virtually non-existent sleep, we recognize that we would do it all a million times over for Francesca. She is the light of our world.