Lucy is sleeping! She is so behind on sleep! For those who don't know, she is an excessively sleepy baby and sleeps on average 17 hours a day: two long naps, a cat nap, and 12-13 hours at night, but not with out waking every three to four hours to feed. This appears to be another symptom related to what is going on with her little body. She has barely slept a total of two hours all day. My hope is that tonight she will catch up a bit as we are no longer on the D10 IV and her vitals are not as "vital" to take any more. She is also done having her glucose levels checked every four hours. It is difficult to sleep through your heal getting pricked. We are quickly becoming educated on the NG tube feeds. After much debate, Lucy will be receiving continuous feeds throughout the night. According to calculations done by her nutritionist and doctors she is going to require a large amount of calories to "catch up", 135cal/kg. We are told that this is necessary for Lucy to thrive. That being said, it is not possible to introduce such a high calorie load at once. They are concerned that if we put this high amount of calories into Lucy all at once she may experience what is known as re feeding syndrome. This is where the body's delicate balance of electrolytes and such go through shock from receiving too many calories at once when you are not used to having so many. It can be fatal if not detected early. In order to know whether or not Lucy is experiencing this, they need to do blood work daily. So that being said, we are introducing Lucy to the tube feedings slowly, and incremental increasing the calories until we get up to the desired amount. This is taking time, and again we wait.
I have to say that writing this blog has been therapy for me, as Drew and I are struggling with the reality of our situation. Your support, prayers, thoughts, well wishes, and phone calls are what we look forward to when we send these messages. For that we thank you, it matters and you are helping! It helps especially on rainy days like today where I am missing our other children so much it hurts! Thank you Jill for the visit tonight, it meant a lot. Thanks also to our friends the Lanahans and the Puffenbergers for taking care of and loving our kids like your own.
My sister quickly decided to made the long journey up from Florida yesterday so that she could help out with the kids. For the kids, this has made this hospitalization more bearable. Thanks EB, we love you! She brought the kids over to the hospital tonight so that we could all have dinner together as a family, she even brought cake. Cake makes even days like today a little "sweeter". It was so nice to eat together as a family! I loved hearing about school and dance class, and talking about the little things that matter to them so much, and hearing Sophie's voice. Her slow, deep, methodical way of speaking always makes me smile, even when I hear "potty talk" come out of her mouth. I'll post a video soon so that you can all hear what I am describing.
Here's hoping for a little sunshine tomorrow outdoors and in!