Home (isolation)Suite Home

 



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, increasing milk feeds,  and easing her ventilation settings to where she needs to be before switching to a home ventilator.  Her body is going through some withdrawal - our girl loves her drugs.  But she's doing well thus far with the vent settings. 
The Dr this week said they'll watch her this weekend & if she continues to do well, they'll most likely switch her to a home vent early next week! He warned that sometimes it takes a few tries, & not to worry if that's the case. 



While we're enjoying the quiet room for reading Little House in the Big Woods, it's rather boring and much less social.  Monday, isolation should be over.  We'll most likely stay in our private suite, but the doors can be left open & people won't have to wear a space suit to come say hi to the cutest baby in the unit.  



Continued.....



A week after the Maternal Fetal Medicine appointment, we met our midwife at the Cardiologists office.  After an echocardiogram, we went to an exam room & were surprised to see our beloved hospice caseworker and physician. The five of us listened to the Dr tell us that after talking to the doctors from MFM & looking at the echo, she believed Sunny's heart to be fixable. She repeated what we'd been told about her Trisomy mocaicism being an immense grey area, and there was no way to know how much the rest of her was affected.


She recommended the children's hospital that she works closely with, and said they'd most likely want to induce early the next week. 
A tad stunned at the sudden change of our projected course, we agreed to come back the following day for a video call with that team. After she left the room, our hospice team & midwife checked on where we were at, how we were feeling, and expressed their support no matter our decision. 




Prayer requests:
- A smooth transition to a home ventilator 
- Her renal artery blood flow & tracheal malaise to improve
- For Jake, our favorite nurse, as he leaves us to finish up school to become a DOCTOR🎉


Thank you so much for your prayers.  We are so incredibly gratful for them & you. ❣️



#twinning

Our new digs DO come with our own built-in 70s looking toilet. So that's fun. 


Costco runs = self care 


Her favorite show

Majo came to visit/babysit so Mama & Papa could go see our slightly hairier girls.  

 👋 Nurse Jake

Quality time with Majo





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