I’m sorry I haven’t updated in some time. Ailyn has been keeping us on our toes with this roller coaster ride post op! She did well the first 1.5 weeks post op. Her echos showed moderate Aortic insufficiency but they were not concerned about that. However, around 1.5 weeks post op, Ailyn started to struggle with heart rhythm issues. She first went into tachycardia and then she went Into atrial flutter. On Saturday the 24th of Nov, she went into a dangerous rhythm without showing signs of coming out. The doctors were forced to perform what is called a cardioversion; this is where they stop the heart with a medication and then shock it to get it into a better rhythm. They had to do this twice to get it to work. However, later that day, she went back into atrial flutter (this means her atrium was beating at appx 380 beats per min). They tried to use her external pacing wires (still left in from her surgery) to try and pace her out of the rhythm, but it did not work. They had to try various medications to finally get her out of this dangerous rhythm. She was in a decent rhythm that week and her heart seemed to be getting better as the echo now showed the Aortic insufficiency had gone to mild. During this period they started to feed her breast milk through a feeding (NG) tube. She did NOT like having food in her stomach! She has been throwing up non stop since they started feeding her 😞. Sadly her left vocal chord was paralyzed during her open heart surgery (the nerves for the vocal chord are around the area they performed surgery on, so we were warned this may happen.). We aren’t too concerned that she will have a quiet voice, what is more concerning is that she isn’t able to close her airpipe when eating and when she vomits, she aspirates milk as her vocal chord can’t close to protect her trachea. So we have now needed to stop feeding her and they are placing an NJ tube in (a feeding tube that bypasses the stomach so that she is less likely to vomit and aspirate) tomorrow. Her breathing is labored because of aspirating so much. We are hoping the NJ tube and added diuretic will help. 

The doctors are also concerned with her leaking tricuspid valve. They are worried it is leaking into her right atrium and the cause of all the rhythm issues. There is a chance we will need to go to the cath lab to diagnose things and measure pressures in her atriums. Their treatment would depend on what they find. 

So, as you can see, this truly is a roller coaster! Things can change by the hour and we have no idea what the coming weeks will bring. Whatever they do, we will work through them and hope to bring our girl home in 2019! 

Thank you for all your support, prayers and love! We are incredibly blessed!!! Ailyn is a fighter, however she has a whole army praying for her, and I have no doubt that has given her strength to get through this! 

Tomorrow evening (Dec 7th), a benefit is being hosted by incredibly thoughtful friends of ours at the Albany Lions club in Albany WI. If you cannot make it, you are welcome to bid on the Brewers items on this page. Ailyns dad and siblings will be at the benefit, but mom will be taking care of Ailyn at Children’s Hospital. 

I will try and update more often. Hopefully Ailyn will give us some “boring days” in which I can catch up on emails, updates and thank you cards. But she has a mind of her own 😉. 

Thank you again for the outpouring of support. We are grateful beyond words! 

Happy Holidays!

-The Rogers’ Family 

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