Both girls are sleeping in! Finally found my opportunity to get this blog finished! Fingers crossed I’m done before they wake 😋.
This week brings back A lot of memories. This week one year ago I started to notice changes in Colbey Raye’s behavior. At about 4 weeks old Colbey Raye had started to sleep less and interact more, she began making the change from a “newborn” to an infant and she seemed to be right on track! But just a week later at 5 weeks old I noticed an increase in her sleeping habits, and a huge increase at that. She was very unstable and still needed a lot of extra head support and she began projectile vomiting at least once a day if not 2 or 3 times each day. I knew (mothers intuition maybe) that something was different about Colbey Raye and these behaviors were not normal. But I tried to brush the excess sleeping off as a growth spurt and the vomiting, well maybe she had reflux that was now just a billion times worse?! And the wobbly head and floppy body? Well she was still only 5 weeks old maybe she’s just a rag doll like baby? I asked my cousin who’s baby is just 2 weeks older than Colbey Raye what Charlee was able to do, how much she slept etc… And was more worried about Colbey Raye’s new sleeping patterns. I’d noticed before that Colbey Raye would do this excessive blinking for a few seconds, zone out a little and then come back to her normal self. On Friday May 24th I witnessed one of Colbey Raye’s seizures for the first time. She was blinking, twitching and non responsive for about 20-30 seconds and I tried pinching, shaking and talking her out of this state, nothing I did worked but eventually she snapped out of it and returned to her normal sleepy self. I again brushed this off, but I said to myself “that looked like a seizure.” Just two days later she was admitted to the hospital, but that flashback will be saved for another day.
So now events that started a year ago have placed us on this journey that has brought us to where we are today, Undergoing surgery number 2. Josh, Colbey and I will be headed to stay the night in Seattle on Wednesday, and then surgery is first thing Thursday morning. At this time in 4 days we will be sitting, waiting wondering, praying, hoping that everything is going smoothly in the operating room. We will have already said our goodbyes and our sweet little miss will be in the hands of God and her wonderful surgeons. This will be a much longer procedure, and I know from how I felt during the last surgery (it lasted 6.5 hours) this one will feel like an eternity. Trying to keep my mind off the situation, trying to keep my thoughts in prayer, and trying not to stare constantly at the pager will be my goal. Stress will be high, but strength is something I’m good at keeping. Some days I wish I was not so strong, but on these days I’m beyond grateful I am. It my be small, but this is my entire world, being a mommy is my entire world, and I feel this world is resting on my shoulders. From one baby in surgery and the other far away from me strength, prayer and faith are my lifelines.
Many family, friends and acquaintances have asked how they can help. We definitely could use all the prayers you can throw our way!prayer is so powerful and we appreciate every one of them. Starbucks gift cards are the most helpful thing for our stays at Children’s! There are 3 locations and we are able to get meals if needed and coffee, much needed coffee. It is hard to leave the room, even for a few minutes but the Starbucks is so close a coffee run can take less that 5 minutes. I have an extremely hard time leaving the room. Even if there is someone else to stay with Colbey Raye, I do not want to miss a conversation with a doctor, I do not want to miss a seizure, and I do not want to miss a moment with her, especially when she is so helpless. Safeway gift cards have been helpful as well. Towards the end of our stay josh will be traveling to and from Seattle a lot and Safeway is a good place to get gas and or groceries. It is hard to pack food for a 10 day trip so Safeway runs will probably happen a few times. In these times anything helps and all is so greatly appreciated!
This will be a 10+ day stay, and from experience I can say I begin to go a little stir crazy. 8 days has been our longest stay prior to this upcoming surgery and I know 10+ days will be pressing hard on my sanity! Other things, we will be great to have visitors, if you want to visit feel free, we do not mind the company at all! all I ask is that we do not have many visitors while Colbey Raye is in the ICU, as only 2 people will be allowed in the ICU room with her at a time. Last time we were just in the ICU 1 night, but I will keep everyone updated as to when we move out of the ICU. Thank you all for the constant support, prayers, and love, we wouldn’t be here without all of it, we and especially miss Colbey Raye are beyond blessed.
Writing helps me clear my head, finding the time is hard but much needed. This may be the last post I’m able to get in until post surgery so thank you all again! Just a little update on Colbey Raye, she’s still have multiple seizures almost daily, even with the increase in medications. She’s very extra tired and is having a bit of a hard week. Clingy to mommy a lot, but that I do not mind 😊. We are getting our snuggles in, our giggles out and some special family time racked up before the big day. ❤️