As most of you already know, little miss MicKeigh failed her 24 hours and has now been listed for heart transplant. As prepared as I was, I still wasn't prepared enough to hear those words come out of the doctors mouth on Friday morning.... I cried. The meeting was set for 2pm Friday afternoon to sign all the paperwork consenting to the transplant. I counted down the hours and then the minutes to when I would be giving permission for them to literally take my baby girls heart out of her chest and put someone else's in its place. When we were going over all the information pertaining the donor, I cried some more. In my mind, I am thinking about how another child has to pass away for MicKeigh to receive their heart... but the transplant coordinator told me to look at is as a good thing coming from the death of a child that would have passed away anyways. So on to the technical stuff....

MicKeigh is listed as a status 1B, medium urgency. She is stable on the IV medicines and we will most likely be here until she receives her new heart. She wouldn't get moved up to 1A unless she made a turn and ended up having to get and LVAD. When they listed her, I had her listed for an ABO mismatched donation. Because she is so young, her body has not developed the antibodies that would fight off a heart that is of a different blood type as hers, she can be listed to receive a heart from any blood type. I also had her listed to receive a DCD heart. When a heart is received from a regular donor, the surgeon retrieving the heart is the one to stop the heart from beating. In the case of a DCD or donor after cardiac death, the heart stops beating on its own. This sort of situation happens when a donor doesn't meet the criteria to be considered brain dead, but the family decides to pull life support, the heart is then retrieved within 3 minutes of it's last beat. Being able to list MicKeigh under both of these really increases the chances of her finding a heart sooner.

I have my phone on me 24/7 now for whenever I receive the call. Once received, they will start to prep her for the transplant. They want no more than 6 hours from the last heart beat of the heart to the first heartbeat of the heart. Children's hospital has their own jet that the surgeon will take to wherever he is going to retrieve the heart, while another surgeon gets MicKeigh ready to receive her new heart. Heart transplant surgery lasts anywhere from 6-12 hours and patients usually get discharged within 7-10 days after surgery. It is kind of crazy to think that we may be here for months until she receives a new heart, but will be able to leave so quickly after surgery. 

She still doesn't want to eat like she should and has steadily been losing weight. If little monkey doesn't start picking up on the eating and gain weight, they may put a feeding tube in her nose. They want to her be her best in every way, including nutritionally so she can be as healthy as can be for the transplant. For now they put her on a special formula to help her gain some weight back and hopefully she will pick up on the eating again soon. A feeding tube in a fairly active one year old will be a challenge for sure, but we will do what we have to do. 

MicKeigh has all the nurses here in the cardiac ICU wrapped around her finger. They said they are going to deem her the unit mascot, with her slogans being, "It's a good thing you're so cute," and "I need a new pulse ox." Little miss ruins at least 3 pulse ox a day. She is super attracted to the light and then pulls them off and slobbers all over them.... but they don't mind because she's adorable. She likes to take wagon rides around the unit and all the nurses swoon over how adorable she is. "Here comes MicKeigh!" "Hi, princess MicKeigh!" All the nurses here are so super amazing and have really made being here somewhat bearable. 

I'm going to turn in for the night, its being an exhausting last few days. Keep the prayers coming!