Life & Liberty

Wowza! Rivy has been discharged from Boston Children’s Hospital just shy of a week after her third open heart surgery. Her recovery has come with many of the usual dynamics: feeding sustainability, med changes, modified movement…and yet she continues to smile.

Post-Op Day 5

The liberties most of us enjoy daily come vividly into focus when life thrusts us outside of our comfort zone. For Riverlyn, at a year and a half (almost), things like walking and eating feel so far off. Yet, even in heart failure, we profoundly celebrate every little aspect of life she lives: smiling, singing, laughing, resting, growing...!

The past couple of days have brought me to the edge of my own limitations as well. Through this entire journey with Rivy, I have been diligent about nourishing, hydrating, taking vitamins, getting outside, connecting, reflecting, and resting. Yet, after such little sleep while inpatient, it seems my reserves have been expended. It can be a scary thing when your chemistry shifts, focus flees, and systems stall. But, after five weeks to the day, I got to sleep in a bed last night. I am still on the mend and look forward to some intentional & ongoing self-care measures as we establish another new normal.

We are preparing to journey home this weekend. In that, we're trying to make sure Rivy has the meds she needs and that we can get to and from the airport in a strategic way. Matthew will drop Grandma and me off with the kids and then drive all the way home.

Rivy has her follow-up appointments scheduled (Rivy's care team is always so gracious in making flexible space for her). We do have to reapply for her nursing support because of the duration of our admission, so that is a prayer point! As she continues to prove out her new cardio-status, we will get back to focusing on growth & milestones (eating by mouth, walking, and sensory aversions). Her surgeon said this valve should last about 4-5 years with dilation maintenance. We're praying for 10-12 💫

As we head into this Independence Day weekend, we are especially mindful of every freedom we enjoy and all those who have sacrificed to preserve our liberty and those who are serving and protecting in all sectors (from military to medical to missions & more) - God bless us, everyone.