The Latest on Antonio

Life after Tony is odd. We've been dropped back into the season that came before we ever knew I was pregnant. Same home, same freedom to technically do whatever we want whenever we want. Sometimes that feels lighter, sometimes it's very overwhelming. It's hard to switch your mindset when you planned on your world being mostly focused on keeping your son alive and happy for the foreseeable future.  We've caught up on sleep and tried to combine the 3 "homes" worth of things we had to have living in 3 different places the past 9 months. It's still a work in progress. Donated my milk, which was painful and beautiful to think about those little ones that need it desperately receiving it. Spent lots of time with family and friends.  We did get to see some hospital staff, which was nice. It's a very difficult thing to not even get a chance to say goodbye. A lot of them showed up to work that week and found out in very rough ways. God is so good at redeeming r...

I really hate that I have to write this update tonight.  Yesterday morning around 6:20am we got a call from the PICU, Tony was coding. We physically ran to the hospital. By the time we got there he had been coding for probably 10 minutes. They told us he got upset, probably trying to poop, and his oxygen saturation dropped. Then his heart rate went with it. They tried to use the ambu bag to give him breaths instead of the vent and couldn't get his airways to open back up. After probably 30 minutes of chest compressions they decided to try to put him on ECMO. That's a machine that basically does the work of the heart and lungs for a time. At first we said okay, but after seeing how long it was taking to get started, knowing that he had been without much oxygen to his brain for more than 30 minutes, I started telling them that I didn't think we should proceed. They agreed that there was almost no chance that his brain was being perfused most of the time they had been doing CP...

Easter week was decent, we were increasing the trigger trials by 2 hours every 2 days and had gotten up to 18 total hours from 12am to 6pm by Friday. He wasn't doing perfectly prior to Friday, but not bad enough for us to stop increasing the trials. He had an increase in his secretions the week before, and we kept thinking he could be getting sick but nothing came of it. Friday night he woke up from his nap and his breathing looked awful, and it was still terrible 2 hours after his trial had ended. He had a pooping episode and then calmed down, so we thought maybe that was it.  We held off on the trials the rest of the weekend, but by Sunday afternoon he was really working to breathe and they decided to swab him for an infection and start him on nebulized antibiotics. Monday night the swab came back and he had a pretty large amount of bacteria grow, but thankfully the nebulized antibiotics covered the bacteria and he started looking better at the 24 hour mark. The rest of this week...