Day 106: First Day/Night in the Hospital

Rylee is my little rockstar! She has been WONDERFUL!

She is currently hooked up to a continuous video EEG monitor. Though she doesn't mind it now, when they had to put those 26 electrodes on her head individually, it was rough, to say the least. She was doing great with the first one until they took an air pump gun thingy (like my technical terms?) and had to dry the glue holding the electrode, to keep it in place. She lost it at that point, and when the nurse kept doing it over and over, she became more and more inconsolable. They let me lay in the bed with her while they did it, so we went back and forth between bottle and pacifier in attempts to soothe her. Both would work for a second and then she was screaming again. As soon as I picked her up, she was out in my arms, and I just held her while she slept.

She was on the monitor for about 2 hours before our room was ready, and then we moved upstairs to the actual Children's Hospital. I must say it's very nice. The room is about the same size as the room I was in for labor & delivery,with a bigger bathroom. The's a "couch" that you can take the back cushions off and it becomes a bed (like the postpartum room, but longer and not as wide), and the loudest chair that supposed to "lay" back into a bed. It lays back alright after making the loudest screeching sound and then if you don't keep pushing back, it sits back up with another screech. Paul was such a gentleman and took the chair last night.

Overall, Rylee has done great! We haven't been able to play like we normally do. We have to stay in sight of the camera that's recording the EEG so we're limited to the crib in the room, and the loud chair. As soon as the doctors are satisfied with the number of tremors recorded (I have to hit a button when I see or feel one) then they will take the electrodes off of her and she'll have her MRI. They've already collected the blood and urine samples, so then we'll be done.

Yesterday, she only had 2 really minor tremors compared to what she normally has. I'm thankful for that, but sadly that means she's connected to this machine for longer. My brother and I watched the computer screen for awhile and he was telling me when she was awake, and sleeping, that he noticed it kept randomly saying XL Spike, though the waves looked pretty much similar throughout. Of course, I consulted Dr. Google (I know better) and basically what I could find is that an XL Spike is abnormal brain activity- though a neurologist has to consult the whole EEG report to decide whether it's a cause for concern or not. She had 7 "spikes" in a 3 minute period, at that point Paul made me lay down and quit counting.

I know she's going to be fine, she has a huge family and support system that loves and adores her and we will all do anything for that little girl. I'm very lucky to have these people around me right now, as seeing my little girl (even though she's doing great) hooked up to all of this stuff and not being able to move her around and play with her like I want to has really taken it out of me.

Paul's at work today (the big wig is coming into his store to look at it, aka Chuck Ride- weird name, I know) so he NEEDS to be there, but I know it's killing him, because he WANTS to be here, and then he has school tonight. It's really getting to him that I'm here by myself, and honestly, I don't like it much either. I'm good at home all day by myself, but there's something about being in the hospital with limited mobility that makes me nervous and uncomfortable. I'm just ready to get my bug home so I can lay in bed and cuddle with her!

I'll try to update tonight or tomorrow with how today goes!