- Today we took a break from weaning Annelise from her sedatives and pain meds because she is having small withdrawal symptoms like occasional tremors. So far she has done really well adjusting to medication changes as long as they are gradual. I'm adding that to the blessings list when I count my blessings.
I'm also grateful for a clean baby today! Kevin did a great job with her sponge bath. Neither of us love giving baths (she's so little! It's scary still!) And Annelise doesn't seem to super enjoy getting them... but none of us want to be the stinky kid in the NICU!
I'm spending more time connecting with other mama's of babies with trisomies here at Children's in Omaha. There are 12 of us altogether from around the United States! Some of the babies here I have been following for months on the trisomy parents Facebook page. They ran into road blocks for heart surgery at their home hospitals... and so they end up here! Knowing these ladies doesn't help me avoid the NICU extremes one bit, since now I know and love their children too, who have up and down days, just like Annelise does! But it's every bit worth it to be part of their tribe here! They are a bunch of Jesus and people loving ladies. Their perspectives have been comfort for my soul on multiple occasions! They have great husbands too... but much fewer vof them can have their husbands with them full time here (another blessing I will not overlook!)
Kevin and I took a walk outside of the hospital for a change of scenery today. I have passed the 6-week mark after my c-section, so I'm trying to be a little more active. The midwest weather was good to us today and it wasn't too humid😅
Annelise was sleeping comfortably when we got back from our walk. She has had less output from her chest tube today than yesterday... but she still has way more fluid leaving her body through the tube than the doctors would expect to see. The plan is to leave her off of feedings for a few more days. She is still sedated enough that she spends much of the day sleeping, so I continue to hope she doesn't notice how hungry she is. Tomorrow we might try to hold her for the first time since she got her trach. The chest tube freaks me out about holding her, but with the nurse's help, it will probably be really amazing!
She is doing well with her trach, and we got our first lesson in trach cares today!
Prayer requests:
- Infection stay away!
- Chylothorax that's dumping so much fluid out through her chest tube... resolve and be gone!
- Growth and muscle tone for Annelise.
Those are the major issues right now. While we're waiting for the next steps for her health, we celebrate every day with her!🥰😍🥰😍
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