I had a very normal pregnancy for the most part until my 8th month during a routine ultrasound. Little did we know this ultrasound would change our lives forever. We knew something was wrong when the tech brought in a more experienced tech. Then a doctor was brought in. Nobody said anything as they stared at the screen we couldn't see. When we asked the tech simply said our baby must be hungry as she had trouble finding her stomach. My first reaction was to be mad that I was just told I wasn't feeding my unborn child. At this point is when the worry set in. But I wasn't sure if I should be worried or angry with the tech so I just brushed off the comment. Two weeks later we went back to our doctor who said everything looked great but we needed to see a specialist because the ultrasound report said our daughter had a fluid filled structure next to her heart and no stomach present. He noted they can often be wrong and don't panic yet. Within a week we went to the specialist who confirmed our daughter had a Congenital Diaphragmatic Hernia. Now during my frantic internet searching I found this but thought there was no way she had this as this defect was horrible and the odds were against us. Off we went to Chicago. I met the man who would deliver our daughter in about 3 weeks for the first time. He set us up with a bunch of other doctors and informed me that our daughter's diagnosis was grim and her defect was large. He said she would likely not survive. I sat alone in a room with only a stranger bawling my eyes out as they did a non stress test on me. I went home and tried to prepare myself for my daughter's passing.
However on August 8th, 2008 at 1:36pm my feisty little girl came into this world fighting. She did extremely well for the first few days. The first time we saw her she was covered with lines in her little body and was on an oscillating vent. Before surgery they tried to switch her to a conventional vent so we could hold her but that didn't work out so well. Because she was doing so well they decided to do her surgery on day 4 of life. However this was against what her first neonatologist wanted. He gave us very little hope and said if she did survive she would likely never walk, crawl, roll over and probably not even breathe on her own. I thank God everyday we chose to go against him and continue treatment. I will never forget him telling us Jaslyn had to have at least 1.6 lungs to survive. After an excruciating wait her surgeon walked out to speak with us. Our immediate question was how much lung tissue she had. About 3/4th of her right lung and merely a nugget for her left. Her left lung did not go back or out it was literally the size of a chicken nugget. In her chest was her small and large intestines, stomach, spleen and entire liver which had adhered itself to her chest wall. We thought it was over but Jaslyn had other plans-and so did God. The following day a new team of neonatologists came in. Talk about divine intervention! Jaslyn's new neo was very optimistic and noted her fight for life was great. I couldn't agree more. On day 6 during shift change we had to leave so we went out and met a mom of another CDH baby girl who was going home. Her name was Hailey and she gave us so much hope. As we went back to the NICU we saw a whole team of doctors and nurses surrounding our baby girl. We rushed into find our little girl crashing. After working on Jaslyn for quite some time her doctor came out to give us our options. We had two. We could stop support and hold Jaslyn so she could pass peacefully or we could try ECMO. Although I was very against ECMO from all I had read when given these options we chose ECMO. Jaslyn stayed on ECMO for 6 days. 17 days after her birth Jaslyn finally came off the ventilator. On day 19 I was able to hold my beautiful baby girl for the first time. Things began moving quickly after that. One day I received a call from her neo personally. He said Jaslyn was doing very well and he was ready to send her to a hospital closer to home. Terrified I was reluctant asking a bunch of questions. We wanted her closer but were nervous about changing her care. Then he informed me the NICU was full and they were turning away sick babies. He said Jaslyn was the healthiest baby they had. I quickly agreed and made him promise he would give another baby the same care Jaslyn received. The hospital even paid for her transport. At the hospital near home she was weaned off her remaining medications that had to be weaned before going home. On Sept 13th, 2006 after only 37 days our baby girl came home with her family. She came home on 1/8th liter of oxygen and monitors along with an NG feeding tube. However after 2 short weeks we got rid of it all. Jaslyn is our little miracle and her strength brought our family strengths we never knew we had in us. Her strength has inspired me to do so much I never believed I could. Other than a bout of RSV at 4 months old she did very well until she was 9 months old. On May 11th, 2007 Jaslyn had her first seizure. That was just the beginning to what was to come. In August she inspired us to hold a blood drive for her 1st birthday. Then off we went to Ohio for a CDH picnic. We missed the picnic but still met some great people. Jaslyn had 4 seizures and ended up hospitalized during our trip. As hard as this was for our family we learned what great people we knew. We had met up with 3 other CDH moms there. All of which had lost their precious angels to CDH. Each one of them mustered up the courage to walk into a major medical center to support our family. For this I am forever grateful. Jaslyn was put on medication but this would not end our life with seizures. Instead it made them worse and again our lives were turned upside down. After many hospitalizations and a few medications changes as well as much research on my part we received a diagnosis. Jaslyn was diagnosed with something called Dravet Syndrome. Dravet Syndrome is even more rare than CDH with only about 500 confirmed cases worldwide. However after receiving this diagnosis I believe even more that Jaslyn's CDH was a blessing in disguise. It is said that 100% of all Dravet patients are affected cognitively and otherwise to varying degrees. We took Jaslyn to see a world renowned Dravet specialist who noted Jaslyn is doing much better than most of her patients. I do not attribute this to anything we have done. I attribute this to her strength, willpower and love of life and also to her CDH. I don't know that Jaslyn would have the fight in her she has had it not been for CDH. In addition Jaslyn has received many therapies from a very early age because of her CDH. I believe that too has helped Jaslyn through all her seizures have thrown her way.
In the time I've taken to write this Jaslyn has been talking and yelling from her bedroom where she should be sleeping. Looking at her you would think she is a happy, healthy, normal 2 year old. But she is much more than that. As her mommy I am proud to tell you that my 2 year old walks, talks, knows some sign language, sings, dances, yells, runs, plays and so much more.....oh and she beats up her older siblings ;) Did I mention her Infant Pulmonary Lung Function Test was so good her pulmonologist said had she not seen Jaslyn's x-rays she would never believe she had a Congenital Diaphragmatic Hernia.