I love you my sweetheart.
Monday, February 29, 2016
There are no strings on me!
Friday, February 26, 2016
Lieben de Nacht
One of the more fascinating discoveries is that Lily is nocturnal.
She sleeps a lot. She can go all day long without waking. You can hold her, irritate her, play music, feed her through her NG tube, change her diaper--through all this she sleeps. Her small body finds it hard to awake when her heart is working so hard.
Speaking of hearts, her heart beat is more of a massive thump. The pulse ox tells me that her heartrate is around 150, this is average for her and is a constant reminder to me that her heart is working harder than it should. Listening to her chest you would notice the same thing. I tease that her heart sounds more like the drumming in the deep from Lord of the Rings.
Unlike my other babies that I could wake during the day and actually sleep at night, Lily can't jive to this schedule. Night time, she awakes. About Midnight she awakes, her still blue eyes looking around, she grimaces and curls forward as if in pain. Yet, the part of her brain that registers pain is damaged, so I'm not sure if she's really feeling pain or not. She has an aversion to toys, doesn't like looking at them, but does like looking at my face...at least I think so. Some T18 babies are blind. Lily isn't blind, but doesn't have much control over her eyes, and is light sensitive. We use targets to help her, and contrasting dark/light colors. But those are hard to use when she's only awake at night.
I've been keeping all my blinds shut during the day because it makes her more comfortable for the small spurts of time that she wakes during the day.
Obviously, this trend is putting a strain on my husband and I with our ability to sleep.
After three days of not sleeping, I switched my sleeping habits.
Andrew comes home from work at 6pm. We eat dinner, clean up, say family prayer, get into PJ's I put up a quiet movie for the kids, then I go to sleep. I love my husband, he is an excellent father and helps with everything around the house--except feeding the cats--haha! He puts the kids to bed at 8pm (yes, I go to bed around 6:30pm). He feeds Lily at 9pm and Midnight. Around 12:30-1am Andrew goes to sleep and I wake up. Lily typically is awake from 12:30am until 3-4am. Depending on the night, I might be able to go back to sleep at this time. Sometimes Lily wakes again from 5 to 7am. Anyway, at least we all get sleep and Lily gets some fun awake time with Mom.
She sleeps a lot. She can go all day long without waking. You can hold her, irritate her, play music, feed her through her NG tube, change her diaper--through all this she sleeps. Her small body finds it hard to awake when her heart is working so hard.
Speaking of hearts, her heart beat is more of a massive thump. The pulse ox tells me that her heartrate is around 150, this is average for her and is a constant reminder to me that her heart is working harder than it should. Listening to her chest you would notice the same thing. I tease that her heart sounds more like the drumming in the deep from Lord of the Rings.
Unlike my other babies that I could wake during the day and actually sleep at night, Lily can't jive to this schedule. Night time, she awakes. About Midnight she awakes, her still blue eyes looking around, she grimaces and curls forward as if in pain. Yet, the part of her brain that registers pain is damaged, so I'm not sure if she's really feeling pain or not. She has an aversion to toys, doesn't like looking at them, but does like looking at my face...at least I think so. Some T18 babies are blind. Lily isn't blind, but doesn't have much control over her eyes, and is light sensitive. We use targets to help her, and contrasting dark/light colors. But those are hard to use when she's only awake at night.
I've been keeping all my blinds shut during the day because it makes her more comfortable for the small spurts of time that she wakes during the day.
Obviously, this trend is putting a strain on my husband and I with our ability to sleep.
After three days of not sleeping, I switched my sleeping habits.
Andrew comes home from work at 6pm. We eat dinner, clean up, say family prayer, get into PJ's I put up a quiet movie for the kids, then I go to sleep. I love my husband, he is an excellent father and helps with everything around the house--except feeding the cats--haha! He puts the kids to bed at 8pm (yes, I go to bed around 6:30pm). He feeds Lily at 9pm and Midnight. Around 12:30-1am Andrew goes to sleep and I wake up. Lily typically is awake from 12:30am until 3-4am. Depending on the night, I might be able to go back to sleep at this time. Sometimes Lily wakes again from 5 to 7am. Anyway, at least we all get sleep and Lily gets some fun awake time with Mom.
Sunday, February 14, 2016
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