Our sweet baby Charlie, who fought so hard for the past 25 days, went to heaven last night, in the arms of Mom and Dad. The day so quickly spiraled downwards; it breaks our hearts to write this.
During rounds yesterday, we were all extremely hopeful. Charlie was doing well; the ECMO was on the lowest setting possible and Charlie was being a rock star, like always. The decision was made to attempt to take off the ECMO that afternoon. The only missing piece of information we needed during rounds was the follow up head ultrasound.
Shortly after rounds, the doctors came to speak to us. The small spot on Charlie's brain was indeed a bleed, with a part of the brain showing ischemia. Our baby boy had a stroke due to the ECMO. They were waiting for a follow up head CT scan in order to confirm their theory. While waiting, they decided to give Charlie a chance and clamp off the ECMO circuit, to test and and see how he could handle it. The first 20 minutes were golden - but his blood pressure suddenly started dropping, and he was not perfusing well. At the same time, they were watching his heart function on echo and found that there was no longer a pericardial effusion, however, there a was a collection of fluid in front of his heart, about the size of his heart. With all of this information, we weren't sure if Charlie would be ready to come off of ECMO after all.
The CT scan confirmed the stroke, however, and the decision was made for us. While on ECMO, Charlie had t0 be on Heparin, a blood thinner. This would only make the brain bleed worse. Ready or not, Charlie had to be taken off of ECMO. Before the decannulation, Dr. Sinha was to drain the fluid from the front of his heart, in hopes that it would help in Charlie's heart function. The doctors were very clear with us - if Charlie was unable to survive off of ECMO, he was not a candidate to be placed back on it. He was out of choices.
Mom and Dad read Charlie a book before his procedure, and then left to wait with family. It wasn't long before they told us our worst fears were coming true. Charlie's pressure had dropped with decannulation, and he was bleeding out from surgery. It was very unlikely they would be able to revive him with CPR, and we had the choice of going in and holding him, or making them do CPR. We chose to hold our baby boy during his last moments here on earth, without doctors and procedures. Just the four of us; mom, dad, Noah and Charlie - together one last time.
We are so incredibly proud of our sweet, brave boy. He didn't live long, but he put up a hell of a fight. He inspired people throughout the globe; prayers around the world were sent for him. We feel those prayers have been answered. Our baby boy will no longer feel pain; he will never have to have his chest opened again. He is in heaven, Noah's personal guardian angel. We feel overwhelming emotions...sadness, grief...but happiness that Charlie Baer will never have to suffer again.
We love you, Charlie Baer. We miss you so much, but we will all be together some sweet day.