Henry

This is my gorgeous boy. Henry Alan Butler, born at 10:03am on May 21st. He passed at 11:56pm on the same day - he was a fighter! We had fourteen beautiful and unexpected hours with him.

 We were prepared. At 20 weeks, we found out his brain wasn't developing. The radiologist saw "cystic images" and wanted to repeat the general ultrasound with a full level two. When the tech got to his brain.. she stopped talking. We went on to get a fetal MRI - and it was confirmed. Alobar/semilobar holoprosencephaly, and Dandy Walker Syndrome. My world stopped. I don't know if it's every restarted, or if it ever will. We decided to carry him to term, and pray and hope that it was all just a mistake. 

 Henry developed hydrocephalus. His head was measuring at nearly 16 inches at my 34 week ultrasound. We delivered him the next week, because of my increasing contractions, and my physician's fears that I would go into natural labor and require an emergency cesarean.

We had a prenatal hospice nurse to guide us through the last eight weeks of my pregnancy. She helped prepare us, got us organized (in this huge room - we had so many people with us! The hospital was like a Hilton!) and prepared. We had the organization Now I Lay Me Down To Sleep send an amazing photographer over to document our son's life. Our pastor was in the operating room with us, and performed a baptism immediately after he was born.

My dad and my husband were able to take Henry outside. My son felt the sun on his face, the wind, he heard birds. He got so many kisses from so many people who loved him. His big sister (nearly two) screamed like a banshee whenever someone else would take him away from her to hold him. She still talks about him - baby babble, but she knows. My boy passed in his daddy's arms shortly before midnight. My husband and I have never cried that hard, have never felt so deeply and keenly this loss.

My world still hasn't restarted. My beautiful boy, with his golden angel curls and his daddy's eyes, isn't with us. The fact that we were "prepared" doesn't make it any easier. The genetics came back "clear" - but there's always a chance that any following pregnancies may have the same diagnosis. Terrifying.

If anyone has the option or time, we really recommend Now I Lay Me Down To Sleep. I really didn't even realize our photographer was there. Here's our photos from that day - http://henrybutler.shutterfly.com.