Riverlyn's road to home...🏡 - Update -

Alas...the roller coaster continues... We got released late Sunday and Riverlyn went outside for the very first time, came home, ate, slept, got meds, ate, slept... everything was wonderful until around 4:30am when she started having some GI discomfort. It became fairly severe and the episode stressed her systems to the point that she couldn't calm down and her breathing was labored. After speaking with 3 on-call people from the team we were advised to call emergency services. So we had Rivy's first ambulance ride back to the hospital. Her progressive care team came down to the ER to examine her and, given the duration of the stress event and her condition, decided to re-admit her. 

The plan today is to increase her diuretics and add a new element to help with GI relief. The hope is that she can be comfortable and able to handle stress enough to give her time to grow before valve repair/replacement surgery (which is an open-heart procedure). Our readmit time is now open-ended again - the hope is that it's not too long so she can be comfortable and safe to grow at home. Nathan kissed her feet about 100x and wanted to hug and squeeze her 🤍

Matthew and I are a bit deflated and I feel like I've been trying to swim against the tide and just got taken under and pulled back out to sea again. 🌊 Now that said, today I came across a little boy with no lower legs and shared an elevator with a mom whose daughter is 3 and has been waiting half a year for a heart transplant. In that, I'm thankful for each moment with our precious girl and joyful boy. Indeed...We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain…