Year-end


 
After reintubation, rest was everyone's top priority for her. They've been watching numbers, rotating her in her bed like a cute & hairy rotisserie chicken, adjusting meds & letting her be.  Sunny's right lung still shows a decent amount of fluid, so they've changed one of her respiratory therapies,  & are still giving her a diuretic to help drain things.  

This week, the doctor on service wanted to try giving her milk again. Last time, it was for a day and the milk basically just sat. So, they stopped the feed,  put in a tube to drain her stomach, watched her belly size for distension, and put her on antibiotics to fight the bad bacteria that could kill parts of her intestines.  SO. Let's hope this round goes better! 
They began the feeding - very slowly - Monday.  Worried that another Necrotizing Enterocolitis scare could delay her tracheostomy (scheduled for Friday), I asked Dr Stout my questions and concerns. She answered, and explained why she thought it'd be better this time around because the stent is in. 
There's some concern around the blood flow to and from her kidneys.  They're getting blood, but it's slower than it should be. They are not sure why, but think that's why her blood pressure has been higher. 



Continued.....


Gray areas are weird places to be in;  It can allow freedom of hope, but the uncertainty can also be very daunting. 
After her diagnosis and prognosis, we canceled the baby shower.  I was very hesitant to, as I felt it would be like giving up on her.  After talking it over & feeling like it would be more difficult both during the shower and after, we decided it best to cancel. 
With the midwives & hospice team we plotted out possibilities of what her birth could entail. From contacting a pediatrician in case she continues to beat the odds & somehow makes it, to my calling funeral homes for transport & cremation costs.  Feeling her kicking inside me and browsing Amazon's selection of cute urns. Weird is really the only word I can give it.  
One of the avenues discussed with the midwives, was getting into contact with a local Pediatric Cardiologist in the event that Sunny would be born more "viable" than anticipated. The midwives sent records over & the doctor reached out saying she wanted to meet before Sunny was born.  


Prayer requests for:
- Sunny to continue to do well with milk feedings🙌🏻
- Circulation to and from her kidneys to improve. 
- Continuing improvement of her lungs and oxygenation. 
- Fridays tracheostomy to go SO well. 

Thank you so MUCH!! You have no idea what it means & feels like to be so surrounded like this right now.  
I'll likely just be posting a new blog once a week on Fridays. & then maybe a quick update when there are big updates, like how her trach went.

Love 
Chris,  Alyssa & Sunny

✨️See you next yearrrrrrr!!!✨️


Cousins patiently spending their day in the waiting room🤍

Kennedy from Child Care got creative with all her fingers and toes.



Sunny is stoked for some new reading material!!

Touring the Nemours Estate

Aunt J

🎀

Pap snuggs

Majo snuggs

Uncle Wes snuggs

Aunt Steph snuggs






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