Update #10

Update on Tobias (2/8/2024)

I have figured out what our nicu journey is like. It’s supposed to be like climbing Mount Everest but for some reason a little ways up we took a detour and ended up on a roller coaster at an amusement park.

Yesterday Nolan and I had a meeting with one of the nicu doctors, pulmonologist, cardiologist, and nurse practitioners. These meetings are never easy for not only us but also the doctors who have to tell us the bad news. We were so excited last week when we were told that Tobias was getting close to a trache. To then this week be told that he’s not even to the step before one. It’s really hard to hear that your baby doesn’t have a 0% chance of surviving but it’s pretty close to it. No one ever wants to say that or be told that. Truly the only thing for him is a miracle. We pray every day for God’s will to be done. There are times we see glimpses of hope where he is doing great and there are other times when it’s extremely scary and don’t know if he is going to recover from it hence the roller coaster.

One great thing is that we were finally able to get him off of his blood pressure medication which we weren’t sure if he would be able to get off of it. I just keep telling Tobias that it is very hard to be a baby and we are asking a lot of him. We will take each little tiny baby step as a win because for a baby as sick as Tobias that is like a giant step. We are just keeping the hope that with time he will continue to improve. They may be very small improvements that over time we will look back and realize they are huge.

Please keep Tobias in your prayers. God is the only answer here.