8 months inpatient waiting on Oakleys miracle heart ❤️‍🩹

We get to come and go as we navigate life outside the hospital… work, school, daily to-dos… but Oakley has never left. 241 days spent in a hospital 😔 we have celebrated birthdays, missed out on birthday parties, celebrated Mother’s Day, Father’s Day, Kash’s 4th birthday, Fourth of July, Oakley’s 7th birthday, and now the kids are picking out their Halloween costumes to trick or treat in the halls of the hospital. This isn’t the life you would ever choose for your child. It’s daily grieving the life she once had. I have faith that the best is yet to come but that doesn’t make this journey any easier. This journey comes with pure heartache. 

Oakleys lab work has been off this week so they will be repeating labs on Thursday. She’s been coughing more frequently and is experiencing on and off back pain. I have to think it’s the progressing of heart failure and the amount of time she has spent in a hospital bed… I just never could have imagined 8 months later we would still be sitting here. It’s truly heartbreaking. She had her monthly repeat echo and EKG yesterday. Every other day is a dressing change since she has a non-occlusive (no adhesives) dressing on her central line. She still has little to no interest in eating any food. Kash is in school 3 days a week to try and keep some normalcy in his life and I am back to work 30 hour a week to maintain healthcare benefits. The last 8 months have been nothing short of pure survival mode. 

Please keep praying for Oakley and the donor family! This life is hard. God never said it would be easy… but together prayer is powerful and we are never alone ❤️

Thank you for your prayers, thank you for all your love, and thank you for all your support. We truly would be drowning without you. 🙏🏽