Alee Faith was born on June 16th, 2016 .After some poor feeding issues and a sweating episode we ended up at UK on June 27th and we were given her diagnosis: Truncus Arteriosis with vsd. We were transferred to Cincinnati Children’s Hospital and Alee had open heart surgery on July 5th, at 19 days old. The surgeons placed her conduit and corrected the VSD during that particular procedure.
Alee then had a heart cath where 5 stents were placed in December of 2016. She will continue to have surgeries/procedures throughout her life. Life changed drastically for our family when our precious Alee came along. We have follow up visits with our cardiologist at UK every couple of months and we never really know what we are going to be told. The conduit that they placed doesn’t grow with Alee as she grows and gets bigger and in her particular case she has had moderate leaking with that conduit/valve pretty much ever since it was placed. We don’t know if/when her cardiologist is going to come in and inform us it is time to have ohs again, another heart cath, or that we just need to schedule another follow up visit in 3-6 months and everything is still looking the same for now.
We have to hope and pray for the best but at the same expect the worst with her Diagnosis. Organizations like PCHA provided our family with so much hope & support. Although it very well seemed that our world stopped spinning the night of June 27th, 2016, we didn’t feel so alone with this having the support that we had. PCHA is by our side as an advocate for our heart warrior and a voice alongside our own that she so desperately needs. This Heart Journey continues for our daughter and all other heart warriors. They can never be fixed, only mended time and time again.