8/20 Josh called me this morning saying the doctors wanted to have another meeting. His heart function has gotten even worse since I was last here Tuesday. He’s been incredibly fussy, upset, uncomfortable, throwing up, etc. I got here right at 12 and we met with a couple members of the team shortly after that. We had the option to place a breathing tube with a possible chance of losing him during the process which we took vs letting him get worse. Josh and I had no idea on if we’d still have him here, we had to say our goodbyes in case the placement and meds was too much on him and they couldn’t bring him back to life. It’s been a long ass day and it’s only 3pm. He’s stable right now but he’s going to keep the breathing tube in for the foreseeable future meaning we can’t pick him up anymore and holding him will be very rare if at all. Our son is on borrowed time right now and we need a heart soon. This shit is no joke. He’s been throwing up all night and day, screaming, not sleeping. We need as much love for this boy as humanly possible because we aren’t ready to give up yet. Odin was diagnosed at 21 weeks during his anatomy scan with Hypoplastic Left Heart Syndrome. This means his left ventricle does not pump and was very small. He came into the world after being induced on September 6th, 2018, weighing 9lbs 7.5oz (big boy for cardiac issues!). He had to undergo a life saving surgery at 1 week old called the Norwood at the University of Iowa Children’s Hospital, where he spent his first 4 weeks of life for recovery. He had his second open heart surgery early at 3 months old called the Glenn with a recovery stay of 5-6 weeks. He has been through NG feeding tubes and G-tubes but was able to get it taken out November 2019 since he was doing great! He had been improving with physical, occupational, and speech therapy to get him back on track after months of physical restrictions. He was THRIVING and growing and being a wonderful toddler. Fast forward to now. June 26th Odin woke up swollen and exhausted. We checked his oxygen and heart rate and we had to go back to Iowa City for an evaluation. He was in heart failure. They tried to do a cath and coil some collaterals to try and help but unfortunately it was meaningless. We started going through the process of talking to the transplant team. He was no longer eligible for Stage 3 in his series of surgeries that kids with HLHS go through. He needs a heart. We were in the Pediatric Intensive Care Unit until they agreed he was stable enough to be moved to the general floor. He was listed as a 1A (top of the list) for a transplant. Friday (8/14) he got worse. Odin was moved back to the PICU and placed on 10 liters of oxygen with a high flow cannula, upped on 1 medication and they added a second to keep his heart pumping. He is very, very sick. The doctors came to the conclusion that he is no longer eligible for ECMO (pumps lungs and heart) or VAD (pumps heart) because it’s too high of risk. Right now the goal is to find a heart ASAP. With his blood type and antibodies it’s going to be hard. We love him with every ounce of our being and we just want him to recover so he can come home and be with us, including his older brother, Abel.