Addie’s Heart Journey

A little back history from Addisyns Mommy ~  Addisyn and her twin sister Brynlee where born on July 20th 2015 both healthy and doing well. Addisyn ended up contracting entero meningitis. It attacked other organs aswell but they where able to heal , however her little heart took it the hardest.  We didn’t know if it would affect her hearing ,sight or even if it would affect her speech and mobility.  She has been smashing her milestones everyday. However her little heart has damage. We have been watching her heart with echos and ecgs also multiple medications to try to help keep her stable . That time in the hospital was scariest time of my life ! While she was in the Nicu she ended up with multiple infections, on top of it blood clots, blood transfusions and also developed an atrial flutter . Her heart rate shot up into the high 200s, In seconds the room was filled with drs and nurses trying to save my baby girl all while I was in the back corner of the room watching them do everything they could to bring her heart rate down.  Things no one should see their baby go through. They  where able to get her stable again but through the course of the 3 months in the Nicu a number of times I was told I should make arrangements that she had a 5 % chance and I may want to say my good byes .... that was never an option I said, no myself and her sister Brynlee needed her here.  She showed us how strong and resilient she is! While Addie was sick her sister was unable to be around her as we did not want Brynlee to end up getting sick.  When she was finally able to see her sister the look on both of their faces was a day I will never forget. They reached for each other’s hands and didn’t let go ! They are a force to be reckon with, they are my world ❤️ We have been watching Addisyn as she grows as they told us she’s going to need a heart transplant at some point .
On feb 12th I received a call from addies heart team regarding her needing open heart surgery within the next two months. This came as a surprise to us as we just had a follow up in January and where told we will see you in six months for another follow up . In this time they did tell us they would be talking about Addisyns case in the next big discussion but not to worry we weren’t doing anything . However the heart team and surgical team at sick kids once discussing addies case they all felt that nows the time. We have a small window frame for a repair for her mitral valve. The time is now . We are hoping that surgery goes well for her but they can’t guarantee it will just be a repair until they get in there. She may end up needing a replacement . This is a high risk surgery for little miss Addisyn as she has other underlying heart issues . Prior to her surgery she will be hospitalized for two weeks on milrinone infusions. We are very lucky that Addie is so very strong and hope that everything goes smoothly she’s been through so much already.  She’s a little ball of fire with such a great little personality. She always sees the best in everything and just adores her twin sister Brynlee and let’s everyone know that’s her sister . At this point we don’t have a definite date as Addie just had a virus (literally the day after they called ) and ended up in Emerg with a double ear infection . I do know they said the surgery would likely be at the beginning of April , there for end of March she would be receiving her infusions. I will update as I know more . As some of you know the cost of being admitted into a hospital can build quickly due to gas, parking,food and accommodations if we can’t get into Ronald McDonald House. As a single Mom, Anything to relieve some stress would be greatly appreciated ❤️Thank you for taking the time to read a brief history and what’s going on now. Please keep us in your thoughts much love , Candace ,Addie , Brynlee and family xo