"Sunny doesn't listen to any of the rules"

Monday at 11:50am, Dr George called to let us know they'd finished up inserting the stent, everything went well🎉 & they were working on getting her back in her room!

She started off by saying,  "Sunny doesn't listen to any of the rules." I laughed & told her that's how she's been living her life. To which she replied,  "Yeah! She didn't listen to the chromosonal rules,  she didn't listen to the stent rules..."

Sunny slept off the procedure for most of the rest of the day.  The Dr on this week said they'll most likely attempt to resume her "c-pap" breathing trials Today. She had previously done really well with those, but more recently was having more spells of apnea. We're hoping those will improve since taking her off of the heart meds - if it does improve, they'll likely attempt one more extubation.  

 

It's true though. She's never doing the thing expected of her & we love that able about our girly. 

Some back story:

At the 20wk anatomy scan everything else looked good, but some heart issues were noticed.  Our midwives referred us to a Maternal Fetal Medicine office for further investigation. 

We had done the 12 wk genetic blood test to find out the gender. Even though those tests all came back clear, after seeing her heart & extra digits, the MFM Dr's wanted to do more testing.  The Amniocentesis results showed her having mosaic Trisomy 18 AND Trisomy 13. The combination of the two have not been seen before(at least no recorded case has been found by our doctors), but the two chromosonal abnormalities individually have a 5-10% survival rate. 

At 25wks they called with the results, one of the MFM Dr's explained how chromosonal abnormalities often result in a first trimester miscarriage. "I don't know how she's made it this far..." He said on the phone, "... there's a 95% chance she won't make it. "

He explained that while we have these diagnoses, it's still an immense grey area because of the combination of the two, and the fact that it was mosaic made it so they had no way to know what, or how severely things were affected.  He tried to give us educated guesstimates of what it might look like and what could happen, but ultimately she'd likely not make it out of the 2nd trimester.   If she did, she would most likely come early, be stillborn, or wouldn't make it long after being born.  We should expect low and poor growth,  poor brain development, & other organ irregularities.

(To be continued...:)

Prayer requests:

- Sunny's body continues to accept the stents well. 

- For her breathing to improve with being off the meds & for the "breathing trial" exercises to go well.  

- & for continued wisdom & discernment for Sunny's parents and the doctors.

Thank you!! We'll try to give updates on Tuesdays & Fridays, so you can check in on those days if you'd like. Thank you for your prayers, we appreciate you.  

Love, 

Chris, Alyssa & Sunny 

 Naps on Aunt Dannelle🤍

Awake before the procedure,

 staring at her Papa🥹

Zonked after the stent, hair still glorious💅🏻