This Blog is long overdue - special shout out to Sammy for showing me what an idiot I am when it comes to setting up a blog.
Starting from the beginning - Evey's birth story. Evey's birth was so unique, looking back now I can now understand why. All 4 of my births have been natural and each so different. Nate & I both said how we felt uneasy about Evey's birth. We weren't sure if it was because Zoey's birth was such hard work(she was posterior) or because it was our last, or some other unknown reason. We had no idea that there would be any complication with Evey before she was born. Evey's birth went like clockwork. I listened to music this time around and it was life-changing, made contractins so much easier. As I jumped into transition around 7cm, I started to cry and felt overwhelmed by the spirit. I also felt immense love for Nate. I thought it was very strange, especially because for anyone who has ever done natural child birth that's the last thing you're thinking about during transition. I got so overwhelmed during contractions by the spirit that I just started to cry. Not in pain cry, but completely encompassed by the spirit cry. Looking back now, I know Evey was surrounded by all those who love her in that hospital room and that was the spirit I felt. She came flying out without even pushing, literally! My OB said it was the first no gloves delivery that he's done in a long time. After she came out, everything was a blur. The first thing that shocked us was how tiny she was. Being 39 wks. and her weighing only 6lbs4oz was really weird considering how big our other kids were. She also wasn't breathing really well and was blue. As the nurses looked her over, we had a completely tactless nurse look at her and shout, "she has down syndrome!" She practically yelled it across the room and all of us including the doctors looked at her stunned. Why is it nurses are either the most amazing people in the world or the most loathsome, it's such a polarized profession.
Moving on...that was the beginning of the 24hrs of hell. After that nobody wanted to make the call on what was wrong with Evey, the nurses came tiptoeing into the room to check on me and all left mum. I'm sure they all knew what was going on, but no one knew quite how to act. The next morning the pediatrician looked at her and told us to emotionally prepare for her having Down Syndrome. I've never cried that hard in my life, a close second was the 9th day of Owen being in the NICU. So I cried and cried for 24hours wondering how on earth I was going to do this. I thought all the mortal thoughts that us mortals think when a crisis prevents itself. I thought about how I'd never see Evey have children or get married(very mortal thought, I know), we all know her companion and children will be hers as soon as she makes it through mortality. I wondered how on earth I was going to take care of our little autistic Owen and Evey's needs. I thought about how deprived Eli and Zoey would feel with all our attention being diverted. It's funny, how foreign and silly those thoughts seem now. So I gave myself 24 hours to mourn Evey's life and our life and then I had no tears left, for real. I had two swollen pink eyes and no tears, so my only choice was onward and upward.
A week later, the test came back negative for Down Syndrome and then became the speculation. We were given three different syndromic diagnoses until after a 5 day hospital stay they decided to run a very advanced genetic test called a SNP that looks all through the chromosomes and all the genes within those chromosomes to see what's going on. Finally came the official diagnosis. Evey has 17q21.31 microdeletion syndrome. Essentially she's missing several genes from her 17th chromosome which will cause physical and mental issues her whole life. There are less than 200 cases around the world and so far the doctors don't know of another family in Utah with this particular syndrome.
People ask all the time how we're doing and I know they're waiting for us to tell them a sad, sob story about how difficult it is and how miserable we are. But here's the honest, honest truth. After the 24hrs of hell, it has been an amazing journey. We get to feed off Evey's giant missionary spirit that just happens to be stuck in a sucky mortal shell. I love watching people hold her and look at her for the first time, it's like teaching a missionary discussion and watching the spirit touch people. I have not seen one person be in her presence and not have reverence for the pure spirit they're feeling, and this from people of all different religious backgrounds or no religious background. She's a blessing in our life and everyone that's around her. She brings a reverence to our home that we feel so undeserving of and we feel incredibly blessed to be a temporary custodian for her spirit through this earthly journey. She is the best gift our Heavenly Father could have given us.
The Latest Update: Evey had another no breathing spell this weekend, so they're officially bumping up her surgery. We'll hear tomorrow when the surgery will happen. It's looking like sometime within the next few days. During her surgery she'll have 5 procedures done. She'll have a nissen fundoplication, a gastronomy tube put in her stomach - so she can be fed through that, tubes put in her ears - hopefully to restore hearing loss in her left ear, a broncoscopy, and her larynx fixed. A general surgeon and an ENT will be performing those procedures. Her head surgery for her craniosynostosis is set for Novemeber 2nd. That's all we have on the books for now, unless something new crops up, which is pretty much a guarantee at this point. I'll update on the blog from here on out about where and when things are taking place.
A blanket thank you to friends, neighbors, and family for your prayers, food, babysitting, and warm wishes that have made hospital stays and doctors visits so manageable. I pray that Lord is blessing your lives for your incredible generosity and service that you've given Nate & I. I only hope one day that we have the opportunity to give us much as we have received these last 2 months. The church is true and the book is blue!
P.S. I know the Lord answers prayers, a few weeks ago I was telling Nate, I wanted to put up a sign that said no visitors unless you have brownies, wouldn't you know that same day we received a package of brownies from a neighbor in the mail and some on our doorstep. Sometimes chocolate is the answer to prayers!