Advocating for Benjamin with a whole new team that doesn’t know him has been incredibly challenging. 

After his heart surgery, where they successfully placed two stents and discovered that his PPHN pressures were even worse than expected, Beni came back intubated. I wasn’t overly worried he’s been intubated before and they told me the plan was to extubate him later that day. 

I shared that historically, Beni does not do well with same day extubation. They were surprised by how feisty he is he was literally punching nurses and telling them to go away and I kept advocating: 

He needs more sedation. These vent settings won’t work for him. This isn’t enough medicine. 

 I pulled up his chart from TGH and explained exactly what has worked for him before. I was met with resistance. 

 They moved forward anyway. 

 Over the next 24 hours he had to be bagged several times because he was fighting the vent and the settings weren’t appropriate for his needs. Finally today, they placed him into a medically induced coma so he can rest, let the ventilator do its job, and allow his body to recover from surgery. 

There isn’t a clear timeline yet it feels like they’re waiting to see what he does and I’ve asked for more specialists to be involved: pulmonology, neonatology, and anyone else who knows fragile preemies like my 4-lb baby. 

He’s in the cardiac ICU, which is wonderful for hearts… but Beni needs more than just a heart team. 

He needs a team that understands his lungs, his history, his prematurity, and his complexity. I will continue to fight for him at his bedside every single day!!

Today I get to visit with the big kids and Ryan. Ryan will trade places with me for a bit and spend some time. Here they don’t allow siblings in to visit. So Ryan and i can’t be together while visiting and the kids can’t see him. 

We are exhausted. This is intense. Nothing about this is easy. And more than anything… I just want to bring this baby home. 💔🤍 

Ben and Viv got some pre surgery snuggles. 🥰