Tags » Edward's Syndrome

What They Don't Tell You When You Become a NICU Mom

Before Harper was born, we were preparing for her to stay in the NICU for a while. (Check out our Labor & Delivery story to learn why Harper stayed in the NICU). 1,283 more words

Harper is 4 Months Old!

She weighs about 8 1/2 lbs and wears newborn clothes and diapers. She still eats about 2 oz of formula every 3-4 hours through her g tube. 602 more words

Everybody Hurts

The other day I was walking around. I was a hotel and there were lots and lots of people coming and going. I do like to people watch. 517 more words


Our Trisomy 18 Journey: The Impossible Choice

Frankly, my choice when facing a Trisomy 18 diagnosis is no one’s business but my own. But being put in a position where I was asked to make an impossible decision has opened my eyes and my heart to others and I urge you all to do the same. 1,217 more words

Dealing with a pregnancy announcement after losing your child

I am so very happy for you and your family, but please do not be offended if I need some space right now. Your child is an absolute blessing to this world and I hope to rejoice with you someday soon, but I need some time to heal first. 300 more words

Our Trisomy 18 Journey: My Baby's Funeral

“Here I am, Lord. Is it I, Lord?”

The sounds of children’s voices echoed through the cathedral at my daughters’ school as my husband, dressed in black, carried our son Gabriel towards the altar. 818 more words

Our Trisomy 18 Journey: The Amniocentesis

My husband and I called up my parents, as we always do in a crisis, and asked if they could come spend the night and take our daughters to school in the morning so we could get to the 7:30 a.m. 934 more words