Annelise's Great Adventure: Life with Trisomy 18: Saturday 8/24

No changes were made to Annelise's care plan for the day, as we're just counting down the days until we try to feed her again to see if her chylothorax has healed enough to not produce extra fluid in her body again. I never learned about the thoracic duct in school.... but I sure have had a memorable life lesson in how important it is to keep intact!
We have an EEG scheduled for Monday to check for seizure activity. Annelise is having episodes of what look like muscles twitches and spasms, along with unusual eye movement. I have been asking about possible Seizures for awhile now... And was given the homework of getting on video the episodes that I was trying to describe. I finally did get one with some eye movements that made the neonagologist agree to get an EEG to see if there is any seizure activity that goes along with those movements. Today the facial movements in her jaw and body tensing were becoming more exaggerated and seemed to bother her. Kevin held her and she went right to sleep! She definitely loves hanging out with her people! She loves it when her favorite nurses talk to her too. When her face isn't being taken over by twitches... She pays close attention and has really good eye contact. As she gets older, her personality is really shining now. She's a sweetie and we love her! There's a possibility that the muscle twitches are just her immature central nervous system misfiring. I'm glad we're getting the EEG done so we can know for sure.
Our NICU nurse has special skills and was able to get the "God's got big plans for little me" onesie to fit Annelise today!
Funny story... I thought I bought it for Annelise, but my friend actually bought it and sent it to her!! It came on the same day as my Amazon order... and was the exact onesie that I had put in and taken out of my Amazon cart more than once, because I loved it so much, but thought it might be too small! We were meant to have this meaningful onesie with such a meaningful message! I just love it! Way better story than if I had just purchased it online. 😍 God's got big plans for this baby. Seizures or not, we'll figure it out. Every day with her is a gift we were told over and over we would likely not to get!❤️