Ela has been listed for transplant 481 days now. Every day, I pray and beg for a good heart for our girl while in the same breath praying for the donor family. How long, Oh Lord? We are still at the beginning of our hospital stay only being a month in, but she is hooked up 24/7. As much as we try to have some “normalcy” and keep her active, she is still limited. Sometimes I wonder if this will all be worth it—the separation from family, the days in the hospital instead of out, the waiting, all of it.

It’s difficult….how to accurately portray the challenges and pain of the waiting, but also the overwhelming blessings and grace God provides day in and day out. Even in my longing and groaning, there are so many blessings to praise God for. Thankful to God that we are at such a great hospital with several garden areas (being from WV, it is nice to see trees and flowers while being in the middle of the city)…thankful for the little heart friends Ela has met here…thankful for the many people that have helped to meet logistical, physical, emotional, and spiritual needs for our entire family.

As far as Ela’s health… We didn’t realize just how much she’s been compensating. Although the continuous infusion of milrinone is annoying, it has done wonders for her! She looks the healthiest I think I have ever seen. She is feeling, acting, eating, growing better. Sometimes it’s hard to remember that she still needs to be here long term. The team reassures me that we are doing the best thing for her right now. We both have our occasional sad and emotional moments, but doing well overall.

We stay pretty busy most days. Daily CHG baths, PT, OT, Therapy groups (music, art, child life, game), playroom, outside walks, BINGO, and other daily/weekly activities keep both of us pretty occupied most of the day. She saw “real-life” Minions the other day and this week was “Camp Week.” So many fun crafts and games filled our time. Yet, seeing the boys was the highlight of this week! This is the first time the kids have been together since Ela came to the hospital. We thoroughly enjoyed our brief time together. This abnormal situation is especially hard on Ela and Josiah. It’s difficult for them to understand that Ela still has to stay in the hospital even when they get to see each other. Nonetheless, it was a great visit and we made the best of it. Pray for us to keep trusting the Lord with our family and thank you for following our family’s journey.

“And those who know your name put their trust in you, for you, O LORD, have not forsaken those who seek you.” (Psalm 9:10)