We woke up at the Rainbow House, and finished packing up... we played Tetris with all of the boxes and bags in the car for quite awhile... then Kevin got the dry ice by himself while I walked to the hospital. I couldn't go with him because there's no room for anyone but the driver! We packed up almost all of the breast milk in two big styrofoam containers that were donated to us by the Omaha Steaks store. Only one bag was left behind! I can only bring one duffle bag on the plane with me, and it is going to be really full, so I won't be able to transport it all... but we got really close! And I'm happy with that☺️. Kevin is going to get new dry ice tomorrow to keep it cold!
It was strange walking to the cafeteria together this morning. Walking down the hallway that we've walked dow for the past 100+ days, but now for the last time! I'm getting excited to be back home! But we are leaving behind a very special place, and there's a loss there!
Kevin got out of town before lunch, like he wanted to, and I went to rounds on my own. I found out that Annelise's phenobarbital levels were low again this morning, so they added a new drug to keep the seizures away. So far, it has been working! Annelise does seem sleepy a lot of the day, but she has had a few long stretches of being very awake too today, so I'm happy with how she is responding to it so far. The specialists at Miller Children's will take over the seizure watch in just 3 more days!
I hung out in Annelise's room where it was very quiet without Kevin. I miss him already! With this tiny glimpse of what it is like being on my own at the hospital, I'm reminded of how incredibly rare it is for dads to be able to stay like Kevin did. We are so thankful to have had this time together. I wanted to write something about how God knew I would need Kevin with me... but then I think about the women that I've met here... And God knows they needed their husband's too. I'm just so grateful that this is one of the ways that God wrote comfort into our story. We didn't get the comfort and simplicity of a clear airway without a trach for Annelise, but we are so fortunate in other ways. I guess the lesson of don't compare and be happy with what you have fits here. And again as always, we have our baby girl with us! We'll learn how to care for her at Miller Children's, and hopefully soon, be ready to move our family on to go home to our House!
I can't wait to see our people! And eat an In-N-Out burger!!🍔
Kevin made it to Cheyenne, and will keep moving on tomorrow!
Kevin thought he might be getting sick, so I threw a mask on too just in case!
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