Cali Camille is 13.5 weeks weighing 9 lbs 4 oz. and has been on the transplant list for 50 days. She is currently still intubated, on a lot of IV medications, and sedated. Up until this point, we have felt like we are taking the least amount of risk by keeping her in this state but now have reached a point where the risks of what we are doing have caught up to our “next step” options. None of these are good options but the difference is she is currently trending towards a medical coma and the alternative has potential to aggressively work her in the opposite direction, which is becoming an awake and functioning baby again. So the CV team has agreed our best option moving forward is a LVAD, Berlin Heart. This is a huge step and is a bridge to transplant. (She will still be on the transplant list). They currently do not have this device and there is a waiting list, of which we don’t have a timeline for as of today but Cali is the first on that list. This will be Cali’s first open heart surgery and will come with all the risks of that but we feel, at this point, the risks ARE the rewards as we can’t continue down our current path. She can be extubated, start weaning her off sedation and pain medicines and we can start feeding her again (she hasn’t eaten in 3 weeks, only through IV nutrition). Of course, we all want that call for a new heart but we don’t know when that will come and cannot live on hopes and dreams. The Berlin Heart is the next best thing and baby Cali will hopefully thrive on it.

Please continue to pray for our sweet, beautiful Cali and the medical team at Lebonheur.