The two MAPCAs coming off the aorta are stealing blood that's supposed to be perfusing the body, instead it's going back to the lungs or "over-circulating". It isn't good news to have these MAPCA's but it was expected that she had at least one, we're glad it's not more.
She's got a long road ahead of her, she's pretty sick. The MAPCAs are what's causing her to be so unstable right now. Avelyn's cardiac surgeon believes she won't stabile as long as she is in her current state-meaning she needs another surgery before she can go home. He doesn't feel confident in her ability to truly stabilize without the danger of having another episode at home. The surgery would be next week and would likely be just finding and connecting the MAPCAs to her left pulmonary artery. Which has had some growth. He may be able to place the conduit to creat a right vebtricle outflow tract but probably not. He definitely won't be able to close the hole in her heart between her ventricles. That's because there's no guarantee the MAPCAs will survive the surgery let along grow afterwards, so the VSD would serve as a sort of pressure release pathway if they didn't. This means another surgery would be needed later in the future. We wouldn't know when until seeing how she does.
Obviously Sean and I are having trouble taking all this in. Avelyn is having trouble recovering from her heart cath procedure now, or at least is recovering as quickly as expected. However it's likely due to her specific anatomy working against her. Maybe she'll do better recovering from a surgery that would alter her anatomy theoretically to her benefit. While the doctors believe she can handle another surgery so soon, I can't help but question it. She's still so small. She hasn't even gained back up to birth weight yet. She's so fragile and decompensates so easily. Granted a lot of this is because of the MAPCAs which the surgery will be addressing. It's all so terrifying. How much can we put her little body through and expect her to recover from. I don't know but I think we're likely reaching that limit. She's not even a month old yet and will have been through two major open heart surgeries.
Yet we don't seem to have a choice. We can't risk taking her home in her current state. She's a prisoner here until we can help in some way. Is this the right path. I don't yet know but our hands are tied. All we can do is pray it is and that she'll finally get some relief and stability. We trust her surgeon whole heartedly but our faith is surely being tested.
Please pray Avelyn finds relief and peace. Pray for our and her medical team's guidance. Pray her surgeon can locate and incorporate the MAPCAs well. Pray for his steadiness of hand and clear mind. Pray for Avie's little body to heal and for the MAPCAs to grow after incorporation.
I have faith that these are all possible outcomes for our sweet baby. We appreciate the prayers and support already lifting up our little Avelyn more than I could ever describe but please don't stop now. Much love and blessings to you all.