New Year New Airway

January 10, 2025

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 anything more at this time.

During her imaging they also noted some abnormalities with her GI tract. Again, it's been back-burner'd because she's not having any immediate issues, but they're keeping an eye on it because it could lead to issues that could be more emergent.

After they came in to tell us the new findings and all the things, Chris turned to look at her and said, ".....How are you here?" On one hand it does really feel like a lot, but I think it also isn't...? With her double trisomy diagnosis, and 5% chance of survival prognosis, I think she's doing pretty good. Chromosomal abnormalities usually affect most of their precious little bodies, and she was expected to be worse off. So while it does feel like it's piling up, she's 7 weeks today & still able to be here!

Continued.....

At our last ultrasound at the Maternal Fetal Medicine office, she was still growing strong. Our Doctor predicted that at the rate she was growing, she'd most likely be born at 7-7.5lbs. He said other than her heart deformities, the actual heartbeat was good. He said unless we wanted to come back for more ultrasounds, we wouldn't need to schedule the next one because that would be the due date week.

He asked if we had things setup with the hospice team, and I told him we were working with them and the midwives to form plans, & were actually also meeting with a pediatric cardiologist next week. Recognizing her name, he seemed pleased that we were seeing her and told us to keep him and the office up to date on things & to send pictures of Sunny.

At 8:40pm the following night, I was in the middle of watching You've Got Mail with my small group ladies, when I missed a call from Maternal Fetal Medicine. I listened to the voicemail and he said he'd call again tomorrow morning to try to catch me, but he wanted us to know that he was sending our records over to the cardiologist.

The next morning I got his call, and hurriedly jotted down whatever phrases I could catch. "Pretty Significant chromosomal defect" but also expressing surprise at her brain development and her healthy weight. I could tell he was hesitant, as he was trying to balance being transparent in his thoughts but not wanting to give us false hope.