by A lot has happened in the past few weeks. We’ve been relatively quiet about it, but it’s time to finally take a moment to catch everyone up to speed.
Most notably – we are heading back to CHOP. Soon. Next week, tentatively scheduled for transport on Tuesday. But as we know from our last trip, that’s subject to change. AJ is also scheduled to be having surgery on Friday the 27th. We don’t know yet WHAT surgery he will have. If he will have the Glenn (which is the second surgery in his 3 step plan) or if he will have a different surgery to buy us some time for him and his lungs to get stronger, or what. If it’s not his Glenn, he will ultimately still need his Glenn eventually, meaning we would be adding an additional open heart surgery to the mix.
Last time we talked to CHOP they were leaning towards his Glenn but were concerned about his continued need for ventilator support, which is something we hadn’t really worked on since we first got back to Iowa.
I’m happy to report that AJ has now spent the last TWO consecutive days spending ALL DAY off the vent — 12 hours on, 12 hours off. He’s a complete rockstar.
Since he’s off the vent, he also has a lot more freedom to move. So he’s spent the guts of the last two days rolling from side to side and then finally over to his tummy, where he ultimately gets comfy and falls asleep unless someone rolls him back. He’s pretty proud of his new trick, which I posted a video of yesterday.
Between the vent and his rolling over, it really feels like his way of saying “I’m strong enough guys, I’ve got this, let’s go!”. Handing him over for surgery is going to be so much harder this time. Last time he was a very, very sick baby, who needed immediate help. This time we will be handing over a smiling, rolling, hyperactive, loving, little boy with a big personality. I know we’ve needed prayers before, but we definitely need them now. His procedure will be high risk, no matter which they choose, which means he’s going to need all the prayers he can get for himself and the surgical teams. And if you all have anything at all left to pray with after that, we could use all the strength we can gather to endure the trip to the OR and the wait while he’s in there there too, and recovery afterwards when I’ll stay up in Philadelphia while Aaron and Averie stay home.
As much as we know AJ needs these next steps, handing your baby’s life over to someone else sure isn’t easy… I sure don’t know how these surgeons do this every single day, but I most definitely know that I’m incredibly thankful for them!
In preparation for mom leaving, last weekend Averie and I went to Wasserbahn and spent the night having some us time. 💕 An extra thank you to Amy for coming to play with her the following morning.
