Hand to Hold's Official Blog: Written by Parents for Parents

4 Tips for Raising a Child with Hydrocephalus

Whether your baby is diagnosed in utero or after birth, the diagnosis of hydrocephalus comes as a shock to any parent. A sad fact is that Intraventricular Hemorrhage (IVH) is the leading cause of hydrocephalus in preterm infants and varying levels of IVH are very common in preemies, especially extremely preterm babies. Unfortunately, just as there is […]

Delight Despite Delays

Sometimes you don’t need to fight for your child. Sometimes they can just play, just be. Sometimes, for parents preemies or special needs kids, it’s hard to know when it is one of those “sometimes.” When my son was born at 23 weeks gestation, I knew he probably wouldn’t be typical, but I kept fighting […]

Celebrating NICU Life with Listen to Your Mother

Each spring, select cities throughout the U.S. and Canada host the annual storytelling show, Listen to Your Mother. Listen to Your Mother is a national series of locally-produced shows in which local writers, authors, storytellers, bloggers, and more take the stage to share their written works on the beauty and the beast that is motherhood. […]

Resentment in the NICU & Finding Peace

I was standing in line at Vons, my cart full of packaged “healthy” food for my week in the NICU, when the lady in front of me turned to the side. I felt my face get hot and tears began to fall as I saw her round, swollen belly. She smiled at me and I looked down. All I could think was, that was supposed to be me. I’m supposed to be shopping for healthy food items for the last two months of my pregnancy.

Instead I was three hours from home, in a city I had never visited, living in a hospital room, hoping that my little girl would make it through the night.

Our NICU floor was on the same level as the labor and delivery unit. Late night coffee runs for me meant that I inevitably ran into a laboring mom walking the halls. I would watch her in envy, wishing desperately I could have had my chance. My early delivery came with no answers, no solutions, and felt very unresolved. As the weeks passed, and those weeks rolled into months, I saw countless moms and learned to just look down, so I wouldn’t face the pain that they were going to get to take their baby home, while I was just waiting to hear the words “discharge.” [Read more]

Turning Loss into Advocacy

by Lana Macrum-Craig, Board President

My daughter Allie Reese would be celebrating her 9th birthday this month. Each year, as Mother’s Day approaches and soon thereafter, the date of her birth, my heart and mind become a little unsettled. Conflicting emotions of sorrow and pain intertwine with love and gratitude for the gift of being her mom.

Like most expecting mothers I had dreamed of joyous milestones with Allie and all that motherhood encompasses. But Allie’s early arrival at 26 weeks gestation and subsequent diagnosis of a very rare and terminal genetic disorder quickly dissolved my joy into anguish, as I knew I would only know the physical presence of my daughter for a short time.

Allie lived 18 precious days. During that time, my family struggled to navigate our emotions and the complicated and overwhelming reality of the Neonatal Intensive Care Unit (NICU). [Read more]