March 4th, 2016 our miracle baby turned a year old. What an amazing year it's been! We celebrated her birthday with friends and family who were able to attend with a slideshow and award ceremony along with cake and cookies to thank everyone who has helped us in some way or another over this past year.
Once some edits are made and birthday photos are added the slideshow will be available here on Ellie's blog. Stay tuned.
I'm enjoying the memories that have been popping up on Facebook. They have been reminding me how far we've come and all that Ellie has accomplished in just one year. However, a year ago today I am reminded of one of the worst days of my entire life.
I felt hopeless and helpless. Nobody had answers as to why my baby couldn't move or breathe well or why she looked weird to me. Everything was scary. I thought she was going to die. I'd already started grieving the loss of my child because even though she's still here, in a way, I did lose a child. I lost the child I'd imagined I'd have. I thought I'd take my baby home after a short 1-2 day stay in the hospital recovering from childbirth. I thought she'd breastfeed and I'd be able to provide her the most comforting and nutritious food available. I had dreamt of the summer afternoons with Ellie in her baby carrier while Nathan played in the backyard and dug in his sandbox. I imagined her coming along with me on weekly trips to the grocery store and to run errands. I thought she'd get to snuggle with me at nap time and do all the things "normal" babies do. Instead of the experience of having a newborn I'd expected, like with my first child, my experience was one of the NICU and time spent away from my family and friends. It felt like I was stranded in a foreign country where I didn't know the language and I was all alone. This was one of the worst days of my life.
A year ago today I celebrated Registered Dietitian Nutritionist day from Ellie's NICU room and I remember feeling like Ellie was going to be sent home on hospice to die. "Happy RDN Day, your child is a vegetable" (RDN=Registered Dietitian Nutritionist). To this day, I still can't get that terrible joke out of my head but I can still see the humor in it. The only thing running through my head was that I, being a dietitian, loved vegetables so much that Ellie's condition must have been the ultimate gift to me.
I'm happy to announce, my daughter is not a vegetable, although she does love her veggies. We know that Ellie's cognitive function proves to be perfectly normal and besides the fact that she's got motor delays and low muscle tone, she's a happy, healthy 1 year old. We're so happy she's here and we love her dearly!
Happy Birthday baby Ellie and Happy RDN Day to all my dietitian friends!
Courtney is Ellie's mom. She and her villiage have been raising Ellie (and her big brother Nathan) and learning how to live with and manage life around Ellie's physical disabilities and special needs. It's not easy but our villiage is amazing. Thank you to all of you who support us, love us, and provide hope, wishes and prayers.