Believe in Castan keychain

My son has Mosaic Triploidy. There are only around 50 recorded cases ever in the world. On November 1, 2011, I took a pregnancy test because I had been having symptoms for a few weeks. My husband was adament that I was not pregnant because I had the Mirena IUD placed in 2009 and it's supposed to last for 5 years. The first, as well as second, test showed positive immediately. I cried all that day because I knew we just could not afford another child. Josh said not to believe it until we had an ultrasound showing the baby. We went to the doctor, 4 times before we could see Castan. Everything went well, other than he always hid from the heart doppler. AT 15 weeks, I couldn't wait any longer to find out what we were having so we went to get a 3D/4D ultrasound done. We were ecstatic to be having a boy, having 3 girls already and losing a son. At 19 weeks, we went to my midwife for an anatomy scan. There we discovered that Castan was not growing correctly. His head was only 2 weeks behind, but his chest and abdomen were about 6 weeks behind. I immediately started crying because I knew something was wrong. Josh tried to stay positive and told me I was just paranoid. Sue, my midwife, ordered that we go see the perinatologist. We went there that Friday. He insisted on an amniocentisis. He was pretty sure our baby had Down's Syndrome. I wasn't sure if I wanted an amnio, because I was scared of the results. He pressured us, so we decided to get it done. 2 weeks later, (at 21 weeks) he called us to his office. He told us that Castan had full blown Triploidy and would not live. He said I was too far along to "terminate the pregnancy", even if I wanted to. We were devastated. I didn't like how he delivered the news so I got a second opinion where the doctor informed us he actually has the mosaic form of Triploidy, and had a chance to live but would most likely be still born. This was was still not the news I wanted. I started researching everything I could get my hands on. I wanted to know everything about DTM. It is such a rare disorder that there is very little information out there. I joined a group of family members of babies with DTM. I started a fb page to show that we were not going to give up on him. My water broke at 29 weeks, where we were told that Cas only had a 10% chance to live bc his lungs were not going to be developed due to my water breaking and him being so extremely tiny. On April 27, Castan was born weighing 1 lb 12 oz, and was 14 inches long. From day one he has been a fighter. A few days after he was born, his doctor told me he didn't expect him to live. I didn't understand because all of his tests had shown he was doing amazingly. The doctor said he wouldn't live because he was "so small." I told him I chose to believe differently. The doctor tried to quote the statistics of full blown Triploidy to me. Full blown is incompatible with life, and has the longest recorded case living to 10.5 months. Every statistic he quoted me, I corrected. I did not want this doctor giving up on my son, just because he didn't understand his disorder. Castan has 3 older sisters, and an angel brother. He is spoiled rotten by his sisters (and by his daddy.) Castan sadly passed away on Shaylor's 8th birthday. He was 8 months old. It was very sudden even though he had been having breathing problems.I took him to Children's Mercy and Freeman ER bc of his breathing and both places said all of his tests were clear. I took him to his paediatrician last Wednesday and Friday and she thought he was dehydrated or on the verge of heart failure but wasn't sure about that bc his liver was not swollen and his xrays of his lungs were clear. The second time we went there She said she thought that a valve in his heart wasn't functioning properly and she was going to refer us to a cardiologist. He passed away on January 9th. Time of death was recorded by the nurses at 11:17 pm (I think) Here is what we know: The entire way home from Incredible Pizza Castan yelled. It was his "I hate this carseat" yell that I have heard every time I put him in the carseat. He stopped crying right as we were getting into town. I thought he had fallen asleep. Oh how I wish I would have checked. We went and got some water then got home. I took him inside in his carseat and thought he was still sleeping so I just sat him in the carseat in the living room. I even looked over at him and thought "He looks so peaceful when he is sleeping." About 10 minutes after we got home Josh went to wake him up and feed him. Josh touched his hand and started saying "Babe. Babe come here something is wrong." He struggled to get him out of the carseat so I took over and screamed for him to call 911. I started CPR while he called 911. I kept doing CPR until the paramedics were down the street then Josh took over. I went on the porch to meet the paramedics. They took forever to get out of their vehicles. I started screaming asking what was taking so long. They finally got inside and started trying to get a vent in him. They took him by ambulance to the ER and my aunt took me and the girls to the hospital while Josh's dad took him. As soon as I got to the hospital a nurse took me back to where he was. Another nurse asked if I wanted to hold him. I had to ask if he was dead and she said "I'm sorry honey he is gone." We spent I don't know how many hours at the hospital holding him then Josh and I went to a hotel courtesy of our friend.