Monday, January 7, 2013

The unknown

"We may never know what caused this."

One of the doctors said these words to Mark and I as we were leaving the fetal care institute in early August. By that point, I knew there was major problems, and I'd been watching the fluid build up week after week. My concern wasn't what caused it, my concern was how it was going to effect my baby. Would Evan make it to our due date? Would Evan be able to breath on his own? Would Evan make it home? This is what I worried about. The unknown. Most days I was faithful that he would be okay, but those fears crept in at times, I'm not going to lie. Knowing what caused the blockage just didn't matter to me. I am sure some parents want to know, but I wasn't one of guess what? Soon after Evan's delivery, I would get to find out EXACTLY what caused the aquaductal stenosis. And what caused that is something that happens randomly, with little explanation in every one in 5600 births. 

I am going to go off on a side note for just a second. I never intended to go this long between posts. I cant even chalk it up to being a busy new mom. The first 29 days of Evan's life we spent the vast majority of our time in room 1823 at the NICU at Cardinal Glennon. I was never so happy as the day we went home, but I was also sad. That place was Evan's first home. Those nurses will forever hold a special place in my heart. In those 29 days I spent a LOT of time sitting and watching Evan. I had more than enough time to blog, but I didn't know what to say, or how to say it. Things changed daily, minute by minute in fact at times. I also wasn't ready to tell everyone that Evan's Hydrocephalus wasn't a random isolated occurrence  It was a bi-product of a much bigger issue. A syndrome that even as a special education teacher, I have never heard of. All of the things I worried about (Him breathing, the rush to cardinal glennon...none of that was worth my worry. He had apgar scores of 9/10. But when Mark carried him over to me, minutes after being born, I knew, I knew something else was wrong. 

Evan has Goldenhar syndrome, also called OAV ( Oculo-Auriculo-Vertebral) For Evan, that means that his left eye did not form. His left ear is very small and there is no opening. Two of his vertebrata are butterflied and he has a 13th rib. Evan's left jaw is underdeveloped, and he has palsy on the left side of his face. Evan has focal alopecia on the left side of his head, yet right above that, he has a tear shaped purple mark, where the hair has grown out 2-3 inches. It sticks straight up and makes me smile every time I see it. Evan is also the cutest little boy I know. Evan has a button nose and a cute little baby mullet  He is laid back and sweet. and only cries when he needs to tell us something. Evan has done better than anyone thought he would. Evan has a mom and a dad who will move mountains to give him what he needs. Evan also has a lipid tumor, just between his third and forth ventricle in his brain. THIS is what cause the fluid to build up. The fluid would keep his brain from forming the way it should. It caused Agnes of the corpus collosum. Evan's pituitary gland is smaller, and sits at an angle. Evan's sweet demeanor and warrior spirit won the hearts of his resident doctor and the greatest primary nurse in the NICU. There are many things "wrong" with Evan, but there are so many things that are RIGHT.

His lungs, heart and kidneys are healthy. He never needed oxygen and breathed on his own from the word go. He is strong and has been through more in 8 weeks of life than most kids go through in 20. He is HERE, and every morning when I wake up, panic hits, just for a moment. Then,  I lean in....and when I hear it, my heart skips a beat and a rush of joy fills my heart. I hear his steady breaths going in and out and I thank God for getting my baby this far.


  1. Kim, I have prayed from the beginning when I heard you needed prayers, but I didn't stop to read the blogs. I knew that you, Mark and Evan were in God's hands and that He would take care of you. I stopped this afternoon and read all of your posts. Please know that Evan is a miracle and that you and Mark are blessed. You are also a blessing to so many others who are reading your blogs. I will continue to pray for your family, and thank God daily for His perfect plan. I love you...

  2. Kim, I know we don't really know each other very well, however you have really been an inspiration to me as a mom ever since I read about baby Evan on Facebook. You are an amazing women for doing what you do in your everyday job anyways, and it truely shows how blessed of a person you are to be able to have the patience to do so. I love reading up on Evan and getting the updates. He is so adorably handsome! I pray every day for Evan and his wonderful Mommy and Daddy. I truely cannot begin to imagine what you are going through, or how you deal with it everyday. You and your little Evan, amaze me, and inspire me every day to be more and more thankful for even the smallest miricals that happen every day. Thank you for sharing and please know we are thinking about you guys! Linda