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A letter to JHC about Jenna | |
Dear JHC,| As I begin my story, I look back at the earliest days of Jenna’s life. Even before her birth, there were difficulties. When I was pregnant with Jenna, I suffered from pre-term labor and was hospitalized for more than 10 weeks throughout the pregnancy. Finally, when I was at the 27 week-mark, I had to be put to bed completely and then, ultimately hospitalized with multiple complications. My precious angel had already begun her “entry” into the world of medical complexity—I just didn’t know it yet.
| At the 30-week mark, my physician did a biophysical profile of my baby and the report noted a potential pulmonary problem and a possible irregularity near the juncture of the diaphragm. Two days later, my daughter was born. Because of my history and the recent preterm issues, a crowd of specialists had gathered for the delivery. Jenna Grace, named for grandmothers and angels, was taken quickly by the neonatal team. I barely had time to count fingers and toes, although all seemed to be in place and, I could see red hair and blue eyes. Of course, all babies have that odd combination of precious and beautiful as soon as you know they are safely in this world, but when a team of physicians are in the room and removes your baby from your arms, there is something suddenly foreboding about what was once a wonderful moment. What seemed like minutes turned to hours, and at last key members of the team returned to tell us that there were “issues”…no one can imagine the shock, and the pain that those words bring to a mother’s heart. The room began to fill with the specialists that had been in the delivery room. And I knew that my child was in trouble. As doctors began to quote statistics and terms I had never heard, I began to search the room for my mother. Only another mother can understand the pain of what was going on. I felt that I was about to lose my child. They were talking about hours and days of my child’s life. I asked to be left alone with my then-husband and my mother. I could not possibly understand what was about to happen. I prayed for guidance. I never looked back. I went to the neonatal nursery to see my daughter. I could hold her in the palm of my hand. I cried for her. I loved her. The next day they told me of all the medical problems that she had…the incomplete esophagus, the GI problems, the heart murmur, the underdeveloped lungs, an incomplete stomach associated with the esophagus…As I listened, I felt certain that I was going into some sort of shock, and I cried until I fell asleep. How could anyone deal with all of this? How could one tiny little girl possibly survive all that she would face? Feeding tubes were inserted. Breathing tubes were inserted. Machines were used for all sorts of functions. Genetics specialists were called in… I fell in the hospital and broke my foot and tailbone. Now, I was confined to a wheelchair and could hardly get to my precious child who was hanging on to dear life. Finally, the last blow. My child had Down Syndrome. I truly did go into shock. In three days, I felt that God had turned his back on me. Why had this happened to me? I had always wanted a little girl, and now I had one and everything was “wrong”…Then, on the fourth day, the couple who had been beside us in the delivery room lost their little girl to complications, and I promised God that I would do the best I could to raise my precious Jenna if He would just let her live. And so He did. With each operation, the first when she was just 2 hours old, she beat the odds. Then 2 weeks old…we continued to face the incredible challenges. I would hold the tiny pink fingers and look at her and realize that I was the one that was all “wrong”. It was through this child that I would learn how to give of myself in ways I never realized before. At the 2-year old mark we had exhausted all “normal” procedures and the esophagus still did not work correctly or effectively for Jenna. We had even used a procedure where she had dilators attached through the stomach and held by a string that was threaded through her nose. We still have those childhood pictures of “the string”…She could not eat effectively and no solid foods were working. She had g-tubes and j-tubes. Pulmonary issues were complicating the picture. By this time, the financial picture was starting to get worrisome. Out-of-pocket expenses and deductibles were on the rise and the insurance company was becoming aggressive about Jenna’s issues, starting to challenge some of her claims and her “usual and customary” costs. I asked for a case manager and was initially denied the request, but finally was granted one. Angels like that would save our lives along the way! For more than two years, we face specialized surgeries and procedures, including the replacement of Jenna’s own esophagus with a segment of her colon (colonic interposition). She faced incredibly long, out-of-town hospital stays, with the need to see different pediatric surgeons at such hospitals like the Mayo Clinic. At this point, the cost of her care sky-rocketed. It had begun to include nursing care and special equipment. The insurance company began to balk at everything from second opinion results to nursing care. She exhausted her first life-time maximum. The family was riddled with debt. Jenna would often face multiple operations and hospitalizations in the same year, sometimes back to back, so there was no time to recover from one financial devastation after another. Because I had been employed in a good job and had good credit in the beginning of Jenna’s illness, I was able to borrow money to cover the cost of much of her care in the beginning. As time passed, and the cost of her care progressed, the financial obligations grew and grew, exceeding anything I could manage. Ultimately, my personal credit was ruined by the very nature of the on-going requirement of Jenna’s needs, but I always remembered my promise to Jenna…which was that I would never give up as long as God would let her live. Today, Jenna is 14 years old. She had her last major operation in July of 2002. She suffered from a number of complications associated with the esophagus (still) and there was a major repair and a removal of the j-tube. A blood clot hit her lungs, causing new pulmonary problems. Jenna also now suffers from tracheomalacia and petit mal seizures, but she has improved in other areas. She has gained weight and her energy and strength have improved. She attends a special school provided by the Catholic School System. She rides horses and dances. Although the financial troubles continue, we are blessed to have a beautiful and loving child in our midst. Thank you JHC, Jenna's Mom, Mary |