Over the past few days, Benjamin developed bacterial infections in his blood and lungs.. but we’re thankful to share that they are now under control. His blood cultures are negative, he’s on antibiotics, and his ventilator settings have been able to come down.. a big win for him! He still has the saddest cough, watching your baby cry and cough on a ventilator is something you never get used to.. truly so heartbreaking!!

We’ve had extensive conversations with the pediatric surgery team, and they’ve all expressed growing concern about his belly. He has stopped stooling, and his bowels are extremely distended, which has turned this into a more emergent need for surgery.

As part of his treatment for pulmonary vein stenosis (PVS), Benjamin will require ongoing heart surgeries every 4–6 weeks until about age two. Many of these can eventually be done outpatient, but a critical part of his PVS treatment is a medication called sirolimus a chemo type drug that has significantly improved survival rates for PVS. This medication must be taken by mouth, likely long-term, and unfortunately his bowel issues are currently preventing him from starting it.

This makes the need for abdominal surgery multifactorial and time sensitive. Of course, surgery carries risks, and I won’t pretend I’m not terrified! Open abdominal surgery is no small thing, especially so soon after heart surgery and knowing another heart procedure is likely in just two weeks. But we also understand how important this step is for his overall treatment plan.

On top of all of this, the separation has been incredibly hard for everyone! Vivienne and I are currently living in Benjamin’s hospital room, while Ryan is holding everything together at home getting the kids to school, practices, and games, and carrying so much on his own. I’m missing so many moments with the big kids, and it breaks my heart knowing Ryan and the kids are missing out on these precious newborn moments with the twins.. all time we can never get back. This season is stretching every part of our family.

Despite everything, we are finding strength in Benjamin’s fight and resilience!! He continues to show us just how strong he is. At this point, we are preparing for a minimum of three more months in the hospital.

Thank you for continuing to love, support, and pray for our sweet boy!💙