Sunny Days

       Monday morning, we were ok'd to make the move over to 2B - the non-intensive cardiac unit! She did very well on the home ventilator, & she was making progress on increasing feeds to the goal amount.  Saturday they took out her picc line out & Monday before the move they took out her arterial line - IV FREE for the first time in her whole life!!!! So, she's only attached to the ventilator, and also the feeding tube while getting milk. This makes her able to wear some clothes!!! They still need to be able to access her body if need be, so kimonos and button- downs have been our friends 🧡  When the nurse said we could start bringing in her clothes, I told her I didn't think the 0-3 month outfit I had waiting for her would fit her anymore.  She laughed and said, "Yeahhhhh maybe just go to 3-6 month sizes" Sunny's got a lot of issues, but growing has not been one of them! THAT alone has been an immense blessing.  We've continuously hear...

 Papa is taking over this week.  Sunny girl is 2 months old, and boy has it been a whirlwind. This week has been full of big strides and hopeful reassurances.  -We were finally able to get out of covid isolation on Monday and it's been such a relief for us and our nurses -We have been able to entirely ween off of her IV sedatives, and mostly off of her morphine -Her milk feeds continue to increase daily -We got put on a "home vent" which means she is doing really well with her trach and breathing   -Hair still look fabulous  -New surgeon plans to review her case next week and give us next steps for potential dates for her heart surgery -Mom and Dad start our 8 week trach care training classes on Sunday -We had lovely visits from Aunt Ambri, Uncle Dane(which I failed to document so did he really visit?) and Yaya!      *also... squatty Sunny looks like a lil troll doll and we are here for it Visit with Aunt Ambri Just cute Heat mizer/troll doll Snug...

  Hi friends!  Welp - last Friday lil Miss Keepeverybodyontheirtoes tested  positive for covid.   Our lovely Nurse Caroll came in & noticed some numbers were off & Sunny just didn't look quite right compared to the day before.  They upped her ventilator settings & started testing everything but the kitchen sink.  She got an Echo, they took blood, snot & urine, she got some xrays - all the things.  They were in the middle of this when I came in that morning, and they were quick to let me know what was going on. They said she'd already started looking better, but they just wanted to make sure they weren't missing anything.   We got moved back the hallway into a more private,  close off-able room for a 10 day isolation stay. Other than that first day when she was looking off, she has not shown any symptoms - thank the Lord. Instead, she's been moving & grooving in progress! They're weaning her off of some sedation, ...

     The trach life is treating her well! Sunny's been resting and healing after the Trachestomy. Wednesday they "changed the trach out" for the first time, and then we were able to hold her again for the first time since the procedure. I'm not exactly sure what changing it out means, but we will shortly! Our 4 hours a week for 8 weeks Trach lessons begin soon, which is both intimidating & exciting. It appears to be veryyyy thorough, and that's good because breathing is important.     Sunny Buns also went for a CT scan for some renal artery images - she's been having high blood pressure, and it was discovered that there are some arterial abnormalities, as well as some narrowing. The doctors think the narrowing is causing the high blood pressure, but since there's still blood getting to her kidneys & there's nothing off with her urine, for right now they're going to continue with the BP meds and just let the nephrology team take the lead on ...

She'll be resting & recovering for about 5-7 days, but everything went well!! Thank you,  Jesus.