Hand to Hold's official blog
Through my website www.babieswithnec.com, I network with parents every week. With every story submission I walk down the memories of Caitlyn passing and feel the pain of the parent writing the story. I follow up with them when I publish the story online and, in some cases, our communication continues for months. Recently, I read [...]
I didn’t know it was possible for someone so small to throw up so much. Indeed, it is possible. The first year of my son’s life was rocky, to put it mildly. He contracted necrotizing enterocolitis (NEC) on day eight of life and we began a pretty delicate balance between nursing, hospital stays and a [...]
“So, it’s possible your son has Meckel-Gruber Syndrome. But, I’m not 100% positive.” Those were the words our son’s geneticist uttered six months ago. She also informed us that while it’s possible he could have it, we couldn’t be sure unless we did further genetic testing (not covered by insurance, of course) that would run [...]
When we talk about the NICU, we can’t share our story without sharing the story of a little boy named Ethan. Ethan was born a day after Kylie and was 11 weeks early, while Kylie was 10 weeks early. I am the type of person that when going through certain experiences, I like to find [...]
When Caitlyn passed away at twelve-days-old our world shattered. Lost, alone, angry, broken and a feeling of being hollow was all I felt. My husband and I were sharing the grieving so it was unbearable to share our sadness with each other, it was so raw and too deep. I did go to therapy, once. [...]
Life does change after losing your child, forever. The world you knew crashes, crumbles and is never put back together. Life has changed, different and will never be the same. It is a new different, not the one you wanted but the one you have to live with the choice to live it. [Read more]
When our son was born at just 3lb. 9oz., due to growth restriction, I thought his 36-week delivery would insulate us from a “real NICU” experience. Oh girl, what was I thinking? I’m the mother of five and had successfully nursed four previous babies for a combined 4.5 years. I was feeling a little smug [...]
The pain and emptiness of losing my daughter, Caitlyn, never leaves. It is strange to say, but I think that the pain and emptiness I feel makes her seem closer to me, as if she is always there. Between my website and the Facebook Group for NEC, it keeps me psychologically closer to her spirit. It allows [...]
Counseling. That wasn’t a word I used, or though of, often. After all, my husband and I had a great marriage, built on faith, trust and love. We had weathered some rocky storms - a big move to another state, graduate school, another big move, a miscarriage and the death of his father. Surely, if we [...]
One month ago today would have been, should have been, my sweet daughter Caitlyn’s sixth birthday. The Easter season is never easy for us, and ironically, shortly after the holiday, I am a part of this website as a guest blogger. First, I wanted to share some of my story, and the legacy that grew from it. On [...]
Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.