Wednesday, March 2, 2016

Unexpected Findings

So, where to begin...
I guess to start out Avelyn's pulmonary arteries look alright, not great but alright. Her left PA is still quite small, but we already knew that. She'll need a cath in about a month to expand the artery branches on the left to lessen the pressure her right ventricle has to pump against. Actually, she'll likely need this procedure every six months for a few years and intermittently as she grows. 
The major finding is, Avie now has what's called coarctation of the aorta. Her aorta is narrowed due to scar tissue where her surgeon took the MAPCAs off to be grafted onto her left PA. The narrowing causes resistance that her left ventricle has to pump against to empty. The added pressure in the left ventricle back flows through her ventricular septal defect into her right ventricle. This added pressure, coupled with that from the small PAs, increases the pressure of her veinous system and may have again ruined her newly repaired tricuspid valve. It is hoped that fixing the coarctation and allowing her heart more healing time will decrease vascular resistance. With decreased vascular resistance the chylous effusion should clear. It's a possibility that we won't know if the tricuspid valve is alright or not until after her right sided pressure is under control. They likely will want to fix the coarctation soon and then send her in for another cath to expand her left PA in a month when the suture lines are stronger. We'll probably be here until both of these procedures are done. The coarctation repair will likely be within the next week. It's not technically an open heart procedure but nearly. They'll preform what's called a thoracotomy, meaning instead of going through her sternum, the incision will be on her side/back. The surgeon will then put a patch on the narrow portion of the aorta that will not prohibit normal growth and development. 
We are not pleased to hear she will need another surgery so soon or so many heart cathertizations. However today's findings could have been so much worse. We were expecting collapsed pulmonary arteries, which would have been devastating for our girl. While CoA is not a good diagnosis to receive, it is repairable and Avelyn should still be able to recover. 
We don't know when the CoA repair surgery will be. Knowing her surgeon, he'll throw her into the first open slot he has. It could be anytime in the next week, we may not know until the day of. 
We'll keep you all posted. Thank you for the support and prayers. Your outpouring of love has given us strength that allows us to continue to fighting alongside our sweet baby, even through some very dark hours. We'll never be able to repay you all for such a gift. Much love to each of you.


  1. I will not mess with this girl when she grows up. Too tough for me. Much love from Grandpa Pickel

  2. Father, thank you for your many answered prayers. please give Avie, and her family the strength they need for this tedious battle. Please continue to give her your healing power. In Jesus name I pray. Amen