Update: July 20, 2020 (Day 11)

Milo is doing okay right now, but the little guy has been through a lot the last few days. As a family, it has been the epitome of an emotional roller coaster, from the highest highs to the lowest lows and all kinds of uncertainty in between, even trading extremes overnight.

By Friday, Milo was continuing to show great progress. Every person that stopped by his room to check on him was shocked with how well his situation was continuing to improve. The team was even able to finally see his left lung show itself on his chest x-ray! Although still only about 5-10% the size of his right lung, this was awesome to see evidence of his lungs continuing to grow and expand everyday.

Talks had begun about the potential to trial Milo off ECMO - and on Saturday morning, we were surprised with a "green light" to proceed with doing so that afternoon (this mean his ECMO circuit will be temporarily clamped off from his body to see how he responds to breathing with only the support of his ventilator - while his cannulas remain in place so that the circuit can simply be unclamped and his ECMO support can be continued at any time).

After nearly two hours without any support from the circuit, Milo was doing very well and all signs showed he was ready to be de-cannulated and taken off ECMO altogether! The surgical team once again turned Milo's room into an OR to remove his cannulas, tie off his arteries, and close him up!

After a few more hours, the operation was finished, everything went smooth, and Milo was ECMO-free! Not knowing this was even in the realm of possibility when we came to the hospital that morning, we were overjoyed with Milo hitting such a huge milestone, and taking such a big leap in the right direction for his recovery.

Milo continued to remain stable on his ventilator for about 6 hours into the night, but then some of his numbers started trending in the wrong direction. The team tried making some adjustments to his vent settings and meds, but ultimately were not able to get him to a place that was stable enough for his body to continue to maintain without some form of additional breathing support (i.e. ECMO). The CO2 and pH levels in his bloodstream were essentially reverting back to where they were pre-ECMO.

Yesterday (Sunday), Milo's doctors had to make the difficult decision to put him on ECMO for a second time. This means a more intense and technical surgery and comes with a lot more risks. But it is what his body needs. Milo had to be transported down to the OR and enlist some extra help from the cardiovascular surgical team as well. As Milo's incredible team that we trust so much wheeled him out of the NICU with a half dozen machines connected in a convoy, this was the toughest time yet for Sarah and I since we had to face the reality that there was a real chance he may not make it through. It was a day filled with prayers, tears, and more prayers - and thankfully by night, our prayers had been answered: Milo made it through the surgery successfully.

It feels like an unfortunate setback that Milo is back on ECMO for a second time, but we are just so grateful that our tiny hero is still fighting. As has been the case since before Milo was born, we continue to take it day-by-day and pray for the best.

Due to some kidney issues which also played into the decision to take Milo off ECMO in the first place, that unfortunately escalated while he was off ECMO, Milo is now going to need dialysis in addition to the ECMO. For that reason, Milo was transferred from the NICU to the PICU after his surgery.

As of this morning, Milo is looking good and is stable on his ECMO circuit. He is being put on dialysis this afternoon to help his kidneys, and then hopefully he can just rest up and continue to grow those lungs.

The marathon continues for little Milo. Please keep him in your thoughts!