November 21, 2001 started off much like any other day. I awoke that morning to the squeals of two happy toddlers, and went to work just as normal. However that night my life would quickly begin to change... While at work, I began to feel very sick and was having severe chest pains. These pains prompted me to call my mother and ask her to meet me at the ER when I got off at work. At the ER they ran several tests, and then finally came back to tell me that I was pregnant. I was in disbelief, as I had previously had no reason to believe I might be pregnant. They told me they suspected I was around 20 weeks, and for me to make an appointment with my doctor for the next afternoon. The next day I went to my doctor as suggested by the ER doctor the night before. I expected this visit to be a routine prenatal visit, but it turned out to be anything but routine. During the exam, my doctor became concerned, as I was measuring very big for what was my estimated gestation, so it was decided that I would go for an ultrasound that day... Later that afternoon, I was sitting in the radiology clinic for a stat ultrasound. During the ultrasound the technician got a very concerned look on her face, she left the room and returned with a second technician. It was then I began to hear things like "tumor, water, hole" I did not know what to think. The technician could not tell me anything, but was sure the doctor would want to see me immediately after the ultrasound was finished. Once back at the doctor's office, the doctor told us that she suspected that our baby had a condition called Hydrocephalus (water on the brain) she told us not to panic as this condition was fairly easy to treat, but that she wanted to send me to a specialist just to confirm the diagnosis. December 26, 2001 I sat nervously waiting to be seen by the specialist. Soon my name was called and we proceeded with another ultrasound (this one being 3D) After the specialist had taken what seemed like hundreds of pictures he excused himself from the room, and asked for us to meet him in his office. We sat in that office for what seemed like an eternity before the doctor finally came in... When he walked in, the look on his face immediately told me that something was not good. He began to tell us that our son had a condition called Lobar Holoprosencephaly, and that the condition was terminal. He continued on to say that our son's chances of survival outside the womb were very slim, and that it was likely he would not even survive delivery... At this point the doctor began to talk to us about our "options" but I already knew that for me there was no other option. Despite what this doctor was telling me, I would carry the baby to term and give him (my son) every chance at living... Three weeks before my due date, I made the decision to leave my job, so that I could prepare for the arrival and death of my child... I picked out songs and poetry for his service, I picked a plot for him to be buried in, and I even picked out his casket. These were some of the hardest most heartbreaking things I had ever done in my life, but I felt they all needed to be done. I wanted to be prepared for anything, but I was not... Yes, I was prepared for my son's death, but I was not at all prepared for his life. March 4, 2002 a beautiful 6lb 15oz miracle made his entrance into this world. Dillion looked so "normal" at birth that doctors began to question the original diagnosis, and thought that perhaps they had indeed misdiagnosed. Within minutes of being born, Dillion was rushed off for a stat head ultrasound and CT scan. I will never forget the look my husband (Charlie) had on his face when he walked into my recovery room an hour later. Things with Dillion were worse than the doctors originally thought. They had re-diagnosed him with Alobar Holoprosencephaly, and said that he would like pass away by the end of the day. My entire family was then allowed into my recovery room, so that we could spend every possible second with Dillion, before he passed away. The next morning when the doctor came into my room he was astonished to see that not only was Dillion still alive, but he was doing well... Three days later much to all the doctors and nurses amazement We were taking Dillion home. However, at the doctor's insistence we left the hospital under the care of hospice. For six weeks Dillion did amazing. No one could have asked for a better baby. He was eating like a champ, sleeping well, and rarely cried... This all changed when I awoke one morning later than normal. I quickly realized that Dillion had not woken up for his 6:00AM feeding, and I became overcome with fear. I slowly walked across my bedroom floor towards Dillion's crib, and leaned over... He was breathing! However, when I picked Dillion up he was very hot, and I immediately knew that something certainly wasn't right. I took his temperature and called my mom. By the time my mom arrived at my house Dillion's temperature at reached nearly 105 and his breathing was becoming very labored. We decided that it was best if we took him into the hospital. I was holding Dillion in the backseat on the way across town when he stopped breathing. I did CPR and got him breathing again just as we were pulling into the ER parking lot. The hospital ran blood test, but could not find anything out of the ordinary, and since Dillion was under a DNR order there was not much more they would for him. They told us to take Dillion home, and do our best to make him comfortable because he was dying. I walked out of the ER that afternoon and collapsed into the arms of my husband, "How could this be?" "It's not fair!" "It hasn't been long enough!" Were the only words I could utter... Later that day, friends, family, and hospice workers all gathered at our home. We all spent the day holding Dillion and praying. That night, I was filled with fear when I lay my baby down to sleep, as I was sure I would wake the next morning to find he had gone to Heaven. The next morning much to everyone's amazement Dillion woke at 6:00am hungry and doing well. It was decided at this time, that it would be best if we took Dillion to a neurologist. After searching for nearly two months, we finally found a neurologist who was willing to take Dillion as a patient and shunt surgery was scheduled for July 17, 2002 at this time Dillion's head measured 68 cm around (bigger than your average basketball) July 2, 2002 Dillion was once again crashing, He woke up that morning struggling to breath, was jaundiced, had a low body temperature, and no bowl sounds, The hospice workers advised us to call any family we may want with us, as they feared Dillion may only have hours left. However in true fighter style the next morning Dillion was once again back to himself. July 7, 2002 We gathered family and friends at a local park and had an un-birthday party for Dillion, as with everything that had already happened we were unsure that Dillion would see his first birthday. July 17, 2002 at the age of four months Dillion had his very first surgery (shunt placement) I can remember sitting in the waiting room, a nervous wreck scared of what might happen. That first surgery was the absolute longest two hours of my life. Dillion came through the surgery with only very minor complications, and was released two days later on July 20. ** It was during this hospital admission that Dillion was given his official diagnosis of Hydranencephaly. September 3, 2002 we were rushing Dillion back to the hospital, as his shunt has broken through the thin layer of skin which had covered it. Dillion went into surgery on September 4, 2002 for what we thought would be a routine shunt revision. Instead Dillion came out of surgery with a external shunt and a severe infection (MRSA) in his cerebrospinal fluid. Dillion was placed on the immediate care floor and monitored very closely. Nurses took cultures from his shunt twice daily, and he was placed on a very strong antibiotic (Vacomician). He also underwent a second shunt revision, as the first external shunt was not draining properly. After fourteen long days, Dillion had his shunt replaced on September 16 and on September 17 we were headed home! October 30, 2002 It was discovered that Dillion had yet another shunt infection. At the time of his release in September we were warned that this would likely happen as Dillion has several small pockets of fluid in his head rather than one large one. Since the Holidays were approaching we made the decision to treat the infection at home, and on October 31, 2002 Dillion spent his very first Halloween trick or treating with his brother and sister (dressed as a Chili Pepper) Weeks went by, Thanksgiving passed, and Dillion was going great. However two weeks before Christmas I awoke one morning to find Dillion in his crib once again struggling to breath. Dillion had a severe case of RSV, and was admitted to the hospital, but with the power of prayer was released two days before Christmas and spent his very first Christmas amidst a sea of presents. Months went by, and it seemed that the hard times were behind us. Dillion was doing well, eating baby food from a spoon, "talking" rolling over, and we had finally started to relax, Then on February 25, 2003 that all changed once again. Dillion began having these horrible jerking spells which would cause his entire body to contract... March 5, 2003 (the day after Dillion's first birthday) Dillion was taken to the doctor, as the "spells" were getting much worse. Dillion had a "spell" during his exam and was diagnosed with seizures and given Phenobarbital to help control them. March 9, 2003 we had a huge birthday bash for Dillion to celebrate a year survived. One hundred and fifty people including friends, family, and hospice workers gathered at our home to shower Dillion in presents and to share in our joy. March 15, 2003 unfortunately the joy and celebration did not last. Dillion awoke that morning once again very ill. His seizures were uncontrollable and he was not able to hold down any food. When his temperature began to raise we were off to the ER. The Emergency room doctors would not do anything to help Dillion and kept telling us, "Your son has a progressive neurological disorder, and this is probably just him shutting down" After spending all night in the ER feeling absolutely helpless we took Dillion to see his pediatrician. Unfortunately his pediatrician was not any help. He gave us some antibiotics and told us to hope they worked. As the weeks passed Dillion became worse. Soon he was being feed through an eyedropper, and could not even hold that down. In three weeks time Dillion had lost 14 pounds and was in pain crisis. April 4, 2003 I could no longer just sit back and wait, as I was told by Dillion's pediatrician to do, so we loaded Dillion up in the car and took him to the Children's Hospital 50 miles away. (To this day I feel that this is what saved his life) The doctor's at the Children's Hospital were happy to help. They quickly had Dillion admitted for pain management and IV hydration. Within four days he was much stronger and was released on Morphine, for pain. It was then that we decided to find Dillion a new pediatrician, who was willing to help. Within weeks Dillion was in to see doctors that we did not even know existed and was finally getting the help that we had been waiting for. May 20, 2003 Dillion was once again becoming weak and having a hard time eating. So we headed back to the Children's Hospital. Once there Dillion was admitted again for severe dehydration. The next morning a series of test were started, and on May 22, 2003 we met with a surgeon. May 23 Dillion was taken into surgery for feeding tube placement. He came through the surgery with flying colors and was already taking 3 oz by the next morning. Two days later Dillion was doing amazing and was released from the hospital Weeks passed and then months. Dillion was growing and getting stronger everyday... He started to get physical and Occupational therapy. In July of 2003 we decided that he was doing so well that he no longer needed Hospice, so we were taken off their program, and Dillion has since been busy enjoying life as a kid.... ** The above was originally written in November of 2003, but Dillion's story does not stop there. Since writing this story we have been on an amazing roller coaster ride. There have been ups and downs along the way, but we would not change a thing. Dillion is the light of our lives and we are thankful each day that we have been given the chance to know and care for such an amazing little angel... If you would like to read more current updates on Dillion, please feel free to visit his Caringbridge Page ** I would rather have thirty seconds of amazing, then a lifetime of nothing special