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Today we are feeling a bit raw. Today was the day we were originally scheduled for discharge. We were so close to coming home - less than a week away. Gus fought long and hard. We fought long and hard with him and for him. His medical team worked hard every day. Sadly, it was not to be. Grief and gratitude. Those are the chief sentiments that remain in the wake of his 229 days of life. Grief because he is missed. Grief because of all the 'nevers' and 'never agains' that intrude, often uninvited, into our minds. Grief because his presence is missed. Grief because my heart longs to lock eyes with him one more time. Grief because I want to make him smile once more. Grief because the hospital became a second home - and we actually miss being there. Grief because we have so much love left to give to him. It feels like our love was robbed of a test - we were ready to go with him wherever he needed us to go, to do whatever he needed us to do. This time, we could not follow him. At least not yet. Gratitude because Gus should have died multiple times. He could've died in the womb. He could've died in childbirth. He could've died in his first cath procedure - or his second one (that got really hairy). He could've died waiting for a heart transplant. He could've died when his heart transplant initially failed. He could've died when he had to come off ECMO emergently. He could've died when we lost a pulse and had to get him on ECMO a second time. He could've died when his lungs needed seven bronchoscopies. He could've died when his body was dumping chyle. He could've died when his kidneys failed. He could've died - twice - when he was getting CPR and instead, we got another day to say goodbye. The abundance of what feel like miracles is not undone by his leaving us now. We got 229 days that many others, and certainly most people throughout history, did not get. Each one of them was a gift. I'm sorry I couldn't bring you home today, buddy. Thanks for changing my life forever. Thank you, Father, for the gift of our son.

Hello, friends. Gus is doing relatively well and remains stable. He began chest physiotherapy (CPT) today to facilitate the recovery of his right lung. Our team is also concerned about his kidneys and fluid balance. He's also experienced some lower blood pressure today, mostly this evening, which may be part of a struggle to find the right balance following his chest closure. Also of concern: we have a leaky drainage site around one of his chest tubes. It's likely a result of the significant change in his body shape due to all the fluid he's shed. It's not immediately concerning, but it adds another complication, and we want to avoid infections. Please pray for Gus and our team as they work to treat his lungs, kidney numbers, fluid balance, and -- especially -- blood pressure. Lots to navigate! Thankful for our team and thankful for all of God's kind providences this last week. Thank you for praying for us and with us.

Hello, friends! Gus did well throughout his chest closure. He came out stable with acceptable blood pressure. Now, as he's adjusting, we're praying his blood pressure remains within an acceptable range and his lungs are able to function well under these new conditions. Overall, we feel good about this progress, but trepidatious as we wait to see how things settle out. He's still adjusting. There's continued concern over his right lung, part of which remains collapsed. Now that his chest is closed, new therapies will become available to help with this. In the meantime, his oxygen saturation needs to remain stable, and his body's ability to shed C02 needs to keep pace. Please pray that his body is able to ride out this big adjustment and that his blood pressure and oxygen saturation remain stable. We are so thankful to make this step -- but much remains to be done. We continue to come boldly before the throne of grace in our time of need. God is good. Glory to God.

Hello, everyone! Tomorrow's looking to be our next "big day" -- assuming nothing too exciting happens overnight. Overall, Gus had a pretty good day today. We are attempting a chest closure tomorrow. We're scheduled for 8:30 in the morning. Please pray it goes well and his heart and lungs tolerate it. His pressures were a little squirrely this afternoon. It's not that they're plummeting like they have during previous episodes of vasoplegia, but he's been wanting to sit at lower pressures than our team is comfortable with. Upping his hemoglobin seems to have helped. Please pray that his blood pressure would even out and sustain overnight and they wouldn't have to do much to intervene. Otherwise he's had pleasant moments of being awake as well as some good rest today in preparation for tomorrow. We'll have more updates tomorrow morning. Thanks for your prayers!