✨ It’s officially been 6 weeks since Ollie received his miracle heart!
✨ And it’s been 2 weeks since he received his plication procedure to help his paralyzed diaphragm begin to work again.
❤️ We are eternally grateful that he received his incredible gift and that he continues to fight and gain strength.
🤍 But truthfully…these past 6 weeks have been by far the hardest for us and for Ollie.
Even in the beginning, we saw more progress and had more stamina.
But after 7 months of hospital life and getting to know our happy baby boy when he was rather healthy on the VAD…
🤍 These past 6 weeks of barely getting to hold him, see his face, or hear his voice have been incredibly difficult.
While we are still making tiny steps in the right direction, it’s demanding every ounce of strength and patience we have as parents (and just people in general).
It’s made even more difficult that it’s the holiday season and we had hoped to bring our baby boy home for Christmas.
🤍 But as that dream slips away from us, we turn our focus on just keeping him extubated and making incremental steps toward weaning his breathing support. Knowing that we will bring him home sometime in the early New Year.
The respiratory factors are the major hurdle right now. Because once he is off of the majority of respiratory support, we will get to start working on feeding him by mouth again. Which will likely be the final task before leaving the hospital.
❤️ We want to say that we are so incredibly grateful for all of you. Your well wishes aren’t going unnoticed and some days they are the only thing that keeps us going when we don’t have anything left in the tank.
🙏 We ask for continued prayers for Ollie’s lungs to gain strength, stay clear, and continue to be able to wean off of support.
🙏 Please pray for his immune system to continue to navigate these challenges and accept the new heart as its own.
🙏 Please pray for his spirit as he hasn’t been held much or been able to play these past 6 weeks. We know his playful spirit is still there as when he feels better he is smiley and enjoys songs and books and playful faces around his bed (many of the nurses come to visit and check on him daily).
🙏 And finally please pray for us.
We are doing our absolute best to stay in this race. But most days it feels like running up a sand dune and the peak never seems to get much closer.
❤️ We love you all and pray you have a great holiday season. Hold your loved ones a little closer on Ollie’s behalf. Every day, every breath, and every heart beat is such a gift from God. And we pray you have many more to come!
Love,
The Paytons ❤️
Dear Payton’s,
Please know that I am praying for complete healing SOON for Ollie. I am also praying for God to give you the strength promised in Isaiah 40:31, that your hope in Him will give you the strength to soar as an eagle!
I understand being in a season of waiting on God to hear your prayer. When you cry out and cry out and believe that He will answer the way you want and expect Him to, but He isn’t. I also know that He is a mighty and all knowing God with a perfect plan. A plan that our minds cannot even consider. So, His grace during the waiting comes in things we aren’t asking for: prayers from people we don’t even know, words of encouragement from unexpected sources, the knowledge that our journey is inspiring others who are going through a struggle as well and don’t have the faith we have. That is His sign that He has not left or forsaken us.
Of course, we still want our prayers answered, that never leaves us. But His little glimpses of Grace are His signs to let us know He does hear us and He is working. Even if he’s not working the way we want Him to, we know He is.
Love,
Patty