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

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]

Investing in Social Change

Imagine having to decide if you want your baby to receive medical intervention at birth that, while potentially saving their life, could lead to a lifetime of healthcare challenges, developmental delays and disabilities.

Imagine after the baby survived despite tremendous challenges, that you were unable to hold your baby because their underdeveloped skin would tear like wet paper.

Imagine after weeks in the hospital, finally allowing yourself a few hours at home to rest and receiving a phone call from the doctor asking how long it would take you to get back to the hospital because your baby was not expected to live through the night. [Read more]

6 Things NOT to Say to a Preemie Parent (and What to Say Instead!)

As a parent of a child who spent time in the neonatal intensive care unit, I can tell you it was the birth experience I didn’t expect and hadn’t planned for. Though my daughter’s stay was shorter than some, the emotional fallout and shock of it all did not wear off for some time. Over the years working for Hand to Hold, I have read and responded to parents sharing similar comments on our support forums and our blog that express similar statements. What do we do when well-meaning friends and family say things that bring up all the emotions we have surrounding a baby’s hospitalization? [Read more]

Accessing Resources with Help from a Social Worker

Having a preemie is a very scary process and can also be very confusing. When your baby arrives early, you’re not prepared in the way you might have been if you’d carried to full term. I know this was the case for us. I was 31 weeks pregnant with our twins when I delivered unexpectedly […]

Going Back: Volunteering in the NICU

When we rode the elevator down from the 7th floor NICU for the last time, we knew that one day, we would be back. This place where we’d logged a significant part of our life, 5 months to be exact, had become familiar. It had saved our baby’s life. So we knew that one day, […]