Living with Neurologic Issues

In October 2000 we were faced with our son being born with Trisomy 18. Yes what is it was our first question. Trisomy 18 is in the same family as downs.. but much more severe. Our son was born emergency c-section at full term weighing 3lbs 6 ounces he was quickly taken to a more advance childrens hospital which he live there in NICU for 25 days. Some complications of Trisomy 18 was large holes in his heart, web fingers, and lowered ears. to us non were visible. We brought our son home on the 25th day to a whole new life. monitors on heart, breathing, and feeding tube. thank God for Hospice Nurse. we were told there was no life expectency so my husband and i would take turns staying up thru the night to be with him if he should part. the hospital expressed the way his finial moments would be. (to disturbing to post) so we prepared for the worst.. with a DNR already in place with the squad. well.. on the 7th day of being at home (31st day of life) i had just finished feeding him and was holding him. our daughter had just left for kindergarten and the sound that i can still hear to this day… the sound of all his monitors going off we called the squad and told them we wanted to change our mind on the DNR ( do not resisate) when the squad arrived 2 min. later. they took our son with tears in there eyes.. to the hospital where he was pronounced dead. I guess the purpose of writing this is to let others know.. I strongly believe the Doctors give you the worst case senerio . in our case.. our son went to sleep in my arms and didn’t wake up.. far from the scene they discribed we actually had morphine here for when he went into his finial hours to help with the pain. but. in our case.. it was as God reached down and took our baby up in his arms to where he was not in pain anymore.