It is crazy, hard, emotional and a little unbelievable to think that one year ago exactly we were rushing our sweet girl to the ER in a state of confusion and panic. One year ago we were spending Memorial Day weekend at our family cabin enjoying the time together playing games, enjoying good food, and just hanging out. Our sweet Colbey Raye was just 6 weeks old and she was as mellow and sweet and sleepy as ever. I will never forget the way I felt that Sunday after my brother noticed the odd blinking and peculiar face Colbey Raye was making on the way to church. I’d seen this same face just a few days before, thinking to myself that was odd but tried to brush it off as we had vacation plans for the weekend. But after my brother brought it to my attention I could no longer ignore the mothers instinct and for the rest of the day my mind was completely distracted and my phone was on YouTube and Google trying to decide if these episodes were, what I though to be, seizures. I truly believed they were!! I video taped an episode that day and had convinced myself she was seizing. A few family members thought I may be right, but it was after all a holiday weekend and who wants to go sit in the ER for something that might be nothing right? So they advised me to wait until morning to see if these behaviors stopped. Others thought I was over reacting, so I let the day continue, my mind distracted, and we cut our vacation a day short and headed home Sunday afternoon, the weather was quite crummy anyways. My sister and I had planned to go see “The Great Gatsby” and because Colbey Raye was just 6 weeks old I drug her along in the front pack while Josh stayed home with Austyn Jayne. The first 20 minutes of the movie I was still completely distracted and panicked about what Colbey Raye had done earlier that day. I kept watching her, staring at her, and after a little while she began to fuss, it was time to nurse! She was nursing just fine and all of the sudden she began to shake, her body stiffened and she projectile vomited all over me and the floor, a few times. I couldn’t control her shaking and I knew in that moment I was taking her to the hospital, I no longer cared what anyone else thought, I knew something was wrong. I called Josh, he took Austyn Jayne to my parents and my sister and I left the theater. I called the on call nurse and while waiting to hear back Josh, now holding Colbey Raye, saw and felt what I had been seeing and he began to panic. 11:30 Sunday night, the day before Memorial Day we drove to our local Hospital for what would become one of the longest, life changing weeks of our life. And the beginning of a journey we never knew we were strong enough to be on.
In the waiting room another seizure, and I feared the doctors and nurses wouldn’t see one and would just send us home assuming I was that “over reacting first time mom.” But I wasn’t, I’m not and over reactor, and this wasn’t my first baby. After about a half hour in the ER, the nurse hadn’t witnessed anything out of the ordinary and the doctor came in with the intention to send us home. In the middle of her “we haven’t noticed anything abnormal speech” I felt Colbey Raye tens up, and I interrupted the doctor saying “she is going to have a seizure now.” After the 5 minute seizure ended the doctor had shear panic written all over her face. No poker face, no attempt to hide her worry, she excused herself from our room saying she needed to make a call. Over the next 8 hours in the ER tests were run, anti epileptic were started, imaging, more seizures etc… And no answers. Finally we were admitted to a room around 9am, the pediatric floor at our hospital had been closed due to no patients at the time. We spent the next 24 hours there, more tests, higher doses of meds and still constant seizing. I hadn’t slept in over 48 hours and I still remember those days as if they were yesterday. Can one ever forget the feeling of helplessness?
We were transferred to Seattle children’s hospital Tuesday morning and would remain there for an entire week trying to control the seizures. Her EEGs were abnormal, and by the grace of God, and a diligent MRI reader, an abnormal area was discovered on her brain. She was diagnosed with Focal Cortical Dysplasia and when the neurologist came in to explain what it was he started with the best case and ended with the worst case scenarios. he began by explaining that these thickened areas were causing miscommunications and therefore causing the seizures. His hope and best case scenario was that we would be able to control her seizures with 1 or 2 anti epileptics and that she would be able to be seizure free after that. His worst case scenario, one he made very clear was not going to happen, but he wanted to inform us that in some “rare” cases brain surgery was possible when children were getting to be on 3, 4 medications and still seizing. He made it “clear” that if for some strange reason Colbey Raye would need to under go a surgery like that it would be after she was a year or two of age and told us not to worry or put much thought into it as he was very confident she would be okay after we got her onto the right mix of medications. Now, just one year later Colbey Raye has under gone 2 brain surgery, she hasn’t just received a resection but a hemispherectomy, she is on not 1, not 2 but 4 very high doses of anti epileptics and her seizure were not controlled even when on all these medications, and she is just 13 months old. We were just as hopeful as her first neurologist was in the beginning, but after adding medication after medication and still having seizures almost daily we knew surgery was needed. After pushing and pushing, getting more and more neurologists to check on her we finally got her approved for her original surgery. Just 2 short months after surgery number 1 the seizures returned and more medication would not control the seizures so surgery number 2 was suggested and much easier to be approved for. Having the surgeon on our side made convincing our team of neurologist much easier. So here we are, exactly one year after her seizures began, 2 surgeries down, and 4 anti epileptics being used, we are hopeful and excited to see what the future holds for miss Colbey Raye. We know there are no guarantees, we know the possibility of seizures to still return is there, but we are hopeful still, and so thankful to be where we are with the wonderful team of doctors we have on our side, wanting what is best for our sweet girl and fighting so hard to give her the best she can have.
A few photos from her first hospital stay.
Update on day 3-4:
Colbey Raye is doing really well most of the time. She’s been pretty content, with some out breaks of irritation and discomfort, but she is handling it all very well! She has begun to associate to much movement with pain so she has been staying very still, just looking around with her eyes to see what is happening around her. She’s very sore and I can tell her head is hurting a lot, she keeps pushing on it and pulling her hair but she is being very mellow about it. She cries out now and again but is quiet most of the time. She still isn’t smiling, or talking, and has barely moved her right arm and is not moving her left leg. Shes taking all of her medications orally except her steroids, those are given via IV, and because she is not drinking from her sippy any more she is getting fluids through IV as well. She still does not have much of an appetite, her diet consisted of Apple sauce and pop sickles! She has had a hard morning again, irritable, in pain and has vomited twice. Because of the vomiting Dr. Ojemann decided not to remove the intracranial drain today, but maybe tomorrow or Wednesday depending on how she does.
Josh and I are hanging in there, between puzzles and red boxes we are trying to keep ourselves entertained and sane 😋, taking turn making coffee runs and getting out to stretch our legs. We did have a visit from my family and from Austyn Jayne yesterday! It was a fun time and Colbey Raye was happy to see her big sister 😊. I got to go get lunch with her and the family while Josh stayed with Colbey Raye. It was wonderful seeing them all especially our Little Lady. Austyn Jayne was a little clingy and emotional but she has been doing really good for my parents and is happy and enjoying her time with the aunts, uncles and her grandparents. Another highlight of the day yesterday, I got to hold miss Raye for over a half hour! It was heaven for me and I think Colbey Raye enjoyed it too, she fell asleep and seemed to be comfy all snuggled up in mommies arms!
A huge thank you to all those who have helped during the last few days, we appreciate everything so much!