January Update:

General Updates:

Theo is still doing great! He is continuing to do all of the normal “baby things” on his own. At 5.5 weeks old Theo is now over 9 lbs and eating almost double what is expected for a normal baby of his size, he’s very engaged and alert when he’s awake, and started rolling over mid last week, he’s a true over achiever!

Medical Updates:

• Theo is still on only 1 IV medication to help his heart contract stronger that is administered through a PICC line implanted in his thigh 
• His echo ultrasounds continue to be stable 
• No other major medical changes

Transplant Updates:

• On January 8th the doctors increased Theo’s miles they are willing to accept a transplant from to 500 miles (the standard amount of miles). Previously the miles were set to 50 because they did not want to do a transplant until after his due date. 
• Theo is listed as status 1A, a designation for the top priority and sickest kids. His doctors have to apply for an exception every 2 weeks. 

Frank and I are doing as well as we can and are trying to remain as positive and optimistic as possible. The days are very very long but our wonderful parents have been taking turns taking the majority of the night shifts so Frank and I can try to get some sleep. We know there is a very long road ahead and transplants come with a tremendous amount of both short term and lifelong risks and we are very grateful for all of the continued thoughts and prayers as we navigate this incredibly difficult situation. 

We ask you to continue to pray for Theo’s heart and for him to be strong and resilient, for the doctors on his team, and for Theo to be able to come home soon so he can start to really live his life. 

We continue to be in awe of our miracle baby. He serves as an inspiration to us all on a daily basis!

Love

Caroline & Frank