Anna Dorsch
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Anna was born on April 5th 2002 at 26 weeks gestation. She was born to save her mother's life, which was endangered due to pre-eclampsia and HELLP Syndrome. Anna was born weighing 1 pound 5 ounces and was 11.5 inches long. The first 5 weeks of Anna's life were rather uneventful; she was intubated but was breathing room air and on very low vent settings. Mid-May is when the real rollercoaster ride began. She came down with infection after infection, had a NEC scare, and 2 eye surgeries. There were several attempts to extubate her with cycles of steroids, and she extubated herself 8-10 times. It was early July when the word tracheostomy entered our vocabulary. On August 13th, 2002 there was a final extubation attempt and she was dealing quite well for 8 hours and then she just stopped breathing, turned blue in my husband's arms, and needed to be resuscitated. We realized then that we had no choice but to go through with the surgery. On August 15th, 2002 Anna was trached weighing 5 pounds. It was wonderful and frightening all at the same time. Someone had cut our tiny baby girl and she was never going to be the same again. After the surgery was over and lots of tears had been shed, we saw our little girl's face for the first time. The doctor's told us that she had grade 2-3 subglottic stenosis and that she would have the trach for 6 months to 3 years. She started eating by mouth a few days after the tracheostomy but was refluxing quite a bit. After several tests to make sure she was not aspirating formula into her lungs it was recommended that she get a G-tube. We fought this surgery tooth and nail because she wasn't aspirating and was eating well. We felt that this was something that would resolve itself with growth. We waited about 5 weeks with little improvement concerning her feeding issues. On October 8th, 2002 Anna had surgery to insert a G-tube and Nissen. Anna was sent home on October 14th, 2002 after 192 days in the hospital. She had 24 hour nursing care in our home that was eventually weaned to 12 hours. She has been hospitalized 4 times since she has been home due to tracheitis and once due to RSV. On June 4, 2003, Anna had her first bronchoscopy. There was noted improvement, but the stenosis below the vocal cords is still significant. In the spring of 2004, Anna will undergo Laryngo Tracheal Reconstruction. It has not been easy but it has been a wonderful overall experience to see her progress. Her strength has been an inspiration to my husband and me.
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