The past 2 months have been a roller coaster of ups and downs. We finally got Ellie home after battling brain bleeds, digestive problems, and trouble feeding. She had 3 blood transfusions while in the hospital and surgery to place a shunt to drain the excess fluid from her brain. She fought hard and even gave a little attitude. 2 days after celebrating Easter, after 8 weeks in the NICU, we tucked her tiny little self into a car seat for the first time and drove her home to begin the rest of her life.
LIFE got in the way of blogging. So here is a little update on life…
Little Ellianna is 2 and a half months old now. She tipped the scales at 6 pounds today!
We all kept pinching ourselves for the first few days, basking in the surrealness of having her home. The older 3 are mesmerized by her. She sleeps a lot. Moments of quiet are punctuated by the shrill squeal of her monitor alerting us that she is not breathing or her heart rate is too low. She still will not nurse much, but she takes a bottle like a champ. Most of all, she is perfect. Beautiful, soft, delicate. A CAPTIVATING reminder of what an awesome Creator we serve.
This past week she had surgery again. She needs to have a permanent VP shunt put in to help her brain function. Unfortunately, there is still too much blood in her brain to do this. They went in on Wednesday to provide a temporary fix for now. We are expecting in 3 or 4 weeks she will need surgery again, hopefully to install the permanent shunt.
The first surgery was terrifying. She was so tiny, so fragile. They had to resuscitate her…then she was not waking up… a whole nother day on the ventilator…scared she might never wake up. She held on though. The second surgery was smoother. No complications and she woke right up. Being more alert this time meant she had more pain, but her cries were strangely comforting.
Today I was thinking… this journey has been hard… I have been scared and at times angry. God has provided for us all along the way. He has kept her safe and allowed us to keep His precious gift. I know that is not the case for every parent. Mommies and Daddies have had to kiss their sweet babies goodbye. They have gone home with empty arms and aching hearts. It humbles me to realize how GRACIOUS He has been through all of this. I want to savor each precious moment with Ellianna.
I was reading through my friend Linda’s blog today; she has been posting about Ellianna and asking her friends to pray. There is note after note of people….families, parents, children…on their knees for our sweet baby girl. People we have never met or even spoken to. People whose names we do not even know. The tears flowed. I am so humbled and touched and awed at what God is doing for us. Makes it seem silly that my faith is so small.
Please leave me a comment; it lets me know you’re listening!