Ellie was born
Ellie was born March 4th, 2015. In my gut, I knew something was wrong my whole pregnancy. It didn't matter that ultrasounds had showed she had a heart defect. It didn't matter they showed she had clinodactyly, or slightly thickened neuchal skin fold or thickened skin over her nasal bone. None of this did anything but make my pregnancy more stressful. People say these tests help ease your mind so you know what to expect when your baby is born. Well, it's just not true, at least not for me. I didn't want to know these things. I wanted to celebrate my pregnancy and that I was growing and nourishing a new life the best that I knew how. As it turns out, there was something wrong, but most likely it had nothing (for the most part) to do with all the soft markers on ultrasound photos.
After Ellie's birth I got to hold her very briefly before she was whisked away by the NICU team. Thank goodness my midwives were so amazing. They recognized Ellie was going to need extra support and called in the team as appropriate. After I was finished up in the delivery room I took a ride in the wheelchair to the mom and baby unit to recover for a little bit. My husband, Jeff, had gone to the NICU with Ellie so I waited for him to come back. I don't remember much about what was going on at this point due to the extreme exhaustion of having been awake and in labor for over 48 hours. I didn't really know what was going on and it hadn't really hit me yet. When my nurse came in she wheeled me to the NICU. I knew at this point there was meconium in my amniotic fluid and that Ellie was in respiratory distress... no big deal, right? She'll have a week of antibiotics and she'll come home. Or so I thought. I wasn't prepared for what I'd experience on my trip to greet Ellie.
Meeting my baby girl
So this is Ellie. I didn't know how much she weighed, how long she was, or how big around her head was. What was the huge bruised bubble on her head? Why was she frog legged? Why was her arm so bruised? What was wrong with her? Why isn't she moving? Why does she look different? Nobody had answers. Everyone tiptoed around me like I was a bomb that would explode if exposed to any information about my baby. Of course, nobody else really had many answers either.
I couldn't touch her.
I couldn't talk to her.
I couldn't hold her.
I couldn't feed her.
I was devastated.
The only things I knew how to do as her mother, I was unable to do because she was so fragile.
At this point my child needed medical professionals and there wasn't anything I could do except pump breastmilk. And while I cried and sobbed and worried feeling helpless and hopeless, that's exactly what I did. I pumped and pumped and pumped some more.
Thankfully we were able to hold Ellie the day after she was born (which seemed like an eternity). Nathan came to meet his baby sister and ironically, he wore his "Santa's Little Helper" shirt. Nathan had decided long before Ellie was born that we should name her Reindeer Song. Quickly, Reindeer Song had become Ellie's first nickname.
Fast forward six months
Today Ellie is 6 months old. Happy half birthday Ellie Belly!
Today Ellie tried pureed banana mixed with breastmilk. She seemed to enjoy the flavor. She's got her work cut out for her. She needs to learn to manipulate food in her mouth and get more coordinated to swallow well. But she can do it! She will be able to eat by mouth. She's strong and her mom is persistent and driven to succeed. We frequently use the wisdom learned from Finding Nemo "just keep swimming, just keep swimming". I don't care if it's the doggy paddle and we're not the greatest swimmers. We're plugging along like the tortoise, slow and steady. We'll make it.
She's come a long way and she gives us hope. She's feisty and she's a fighter. Ellie moves her arms to play with her toys. She babbles and cries and laughs out loud. She smiles all the time and she's easy to please. She makes me a better person and a better mom. Ellie has taught me to live in the moment and to focus on love and to not dwell on the unknown.
A couple weeks ago Jeff, Ellie and I all got our blood drawn for whole exome sequencing. Maybe we'll get answers. Maybe we won't. But for now we're waiting a few months for the genetics test results and in the meantime celebrating every little milestone as we experience it. We're grateful. We've been blessed with the happiest baby girl ever and for the opportunity to appreciate life, friends, family, community, health, and how to treasure life's simplest pleasures. Thank you to everyone who has helped us in some way through this journey. We appreciate each and every one of you.
Ellie, you silly little girl, you've made us better! We love you! Happy half birthday!
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.