🤍 Riverlyn 🤍 - Update 6 -

Good evening everyone, 

We were waiting on some tests to send this update. For the past four days Riverlyn has been without her feeding tube. Her reflux and oral aversions were quite intense and the team wanted to go another route to see how she'd do with the opportunity to pursue nursing. She has been on IV nutrition to bridge the gap but she has made some progress with nursing on a more consistent basis. That said, some issues with choking while nursing, challenges with oral medications, and disinterest in bottles are putting us on the edge of being back on the feeding tube. Some of these elements led our speech therapist to consult with ENT who did a scope today. 

The scope revealed that her left vocal chord is currently immobile. This was a potential side effect of her surgery—the image below shows where the nerve wraps around the aorta where her repair was made. The subclavian artery they repurposed for the repair is also labeled in the graphic. I read a handful of medical articles on this topic today and there is lots of evidence that this is very common for babies who've had a coarctation repair. The injury also contributes greatly to feeding difficulties and increased risk of aspiration. The next couple of days will determine direction for feeding.

The other big event today was that Riverlyn's received a blood transfusion. Her numbers have declined that show us how her mitral valve is performing. This will need to be watched very closely. She'll have another echo tomorrow post-transfusion to see what the numbers show. Below is an illustration of mitral stenosis. 

With these big-ticket element variables, Matthew and I are finding ourselves fairly emotionally exhausted. We've both been sowing in tears consistently over the past few days especially. We remain in pursuit of healing and heaven's help as we steward each moment. We also stay in immense gratitude for our beautiful children and the gift of family and friends in the midst of it all. Here's our princess of power (on her one-month birthday) and her faithful protector, our moo foo fighter 💕