My baby boy was born on Tuesday morning, Feb.5. It was a natural birth, but he needed immediate resuscitation. I got to give him a little kiss after they established his breathing and rushed him out to intubate him with oxygen. Then I didn't see him for about an hour and 45 minutes, but I had continuous updates on his health from my midwife.
He was taken to the children's hospital about 3 hours after the birth and Grant and I visited him that afternoon at the neonatal intensive care unit.
Over the next few days we found out that he had trisomy 13. Our lives were shattered. He was finally diagnosed with full trisomy 13 one week after the birth. We decided to switch to palliative care, to give him as comfortable and full a life as possible. I wanted to get him away from all the IVs and monitors, x-rays and ECGs. His life and death were going to be as peaceful and natural as possible.
Ten days after his birth, on Friday the 15th, we moved him from the NICU to Roger's House, next door to the hospital. His health had been failing that week and the doctors did not expect him to survive more than a few hours, but he did really well. We lived with him at Roger's House for a whole week before bringing him home. The staff set us up with all the supplies that we needed for home care and we had learned how to feed him breastmilk through a tube into his stomach. It was nice to finally be going home, and we knew that we probably wouldn't return to Roger's House. Every minute that we spent with William was precious.
Just after 8PM on the day we brought him home, William passed away peacefully in our arms.
He was a wonderful little guy, and we are so happy that he survived to be born and gave us a chance to get to know him. My beautiful little boy.
William and me
Skin to skin
Holding handshttp://i29.photobucket.com/albums/c2...ding-hands.jpg
He was taken to the children's hospital about 3 hours after the birth and Grant and I visited him that afternoon at the neonatal intensive care unit.
Over the next few days we found out that he had trisomy 13. Our lives were shattered. He was finally diagnosed with full trisomy 13 one week after the birth. We decided to switch to palliative care, to give him as comfortable and full a life as possible. I wanted to get him away from all the IVs and monitors, x-rays and ECGs. His life and death were going to be as peaceful and natural as possible.
Ten days after his birth, on Friday the 15th, we moved him from the NICU to Roger's House, next door to the hospital. His health had been failing that week and the doctors did not expect him to survive more than a few hours, but he did really well. We lived with him at Roger's House for a whole week before bringing him home. The staff set us up with all the supplies that we needed for home care and we had learned how to feed him breastmilk through a tube into his stomach. It was nice to finally be going home, and we knew that we probably wouldn't return to Roger's House. Every minute that we spent with William was precious.
Just after 8PM on the day we brought him home, William passed away peacefully in our arms.
He was a wonderful little guy, and we are so happy that he survived to be born and gave us a chance to get to know him. My beautiful little boy.
William and me
Skin to skin
Holding handshttp://i29.photobucket.com/albums/c2...ding-hands.jpg
h my, I'm so very sorry for you and your family. What a terribly difficult experience! 
That really sucks 
