15 weeks of Sunny days

 


Monday, Sunny had a follow-up echo to check on how and if her heart was improving in flexibility since starting the medication. The results showed no real improvement. The Dr said that it was good and bad - good that it hadn't gotten worse, but it hadn't gotten better.  They upped the dosage & decided to do another echo in a few days. 

Wednesday was BUSY for lil Miss Sunny Buns. The morning started off with that repeat echo, which showed essentially no change.  She also had a redressing of her picc line, a scope to see if they needed to size up in trachs, and then the trach change.  She was pretty displeased with all the activity of the day, as well as hangryyy as she had to fast for the scope and trach change. Sunny IMMEDIATELY zonked out after the trach change and some dinner.  



The doctors are discussing the next steps now that her heart isn't as happy as it had once been.  Ideally, they were going to send us home to let her grow & then we'd return when she was about 9-12 months old for heart surgery.  They talked about not wanting to push it out too far and risk her hearts function decreasing more. We'll have a better picture of options and opinions in the next few days.  

On the plus side, she's been doing reeeeally well on her ventilator! This week, they've actually come down in some of the vent supports♥️ They lowered the minimum number of breaths per minute the machine will give and they decreased some of the air pressure support given during and between breaths.  She's able to breath over those if she wants to, and so far she's tolerated both changes very well. AND homegirl is wearing 6 month sizes💪🏼


Specific prayer requests:
- Sunny's heart flexibility to improve
- wisdom for the Dr's & her parents

Thank you so very much!! Your prayers and encouragement mean so much to us.  It's am awesome thing to be surrounded by so many & we do NOT take it lightly.  Thank you for loving us and our girl so well.  

Love, 
Chris,  Alyssa and Sunny


👀

I don't know why every day isn't pigtail day 

She's amazing and we love her



Sleeping peacefully while she continues to cause chaos in the field of medicine





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