|Chilling in our bouncy seat for the first time! :)|
Dear Family and Friends…….
It is amazing how much can change in just a few short hours. We are constantly updated on Emma’s care plan and needs. Today is no exception to that. Today, during surgical rounds, we found out that perhaps, Emma’s heart/lungs are not performing exactly how they should. Yesterday during the cath they found that the pressure in Emma’s ventricle when it relaxes is a 13. Today, Dr. Forbess informed us that ideally that pressure would be a 6 or 7. We also found out that Emma’s right lung did receive quite a bit of damage from the restricted atrial septum. While this damage should not be unconquerable, it is hard to overcome when your heart is not quite functioning as it should. While Emma’s heart is “fixed” like it should be, it is not relaxing as it should. In a baby without lung issues, this would not be a huge problem, but with a baby like Emma, it can be. So, what does this mean? Well, basically this means that it is in Emma’s best interest at this point to be put on the heart transplant list. This was somewhat shocking to us today. We have known from the day we met Dr. Forbess that this was a possibility for us, but we really wanted to Emma to do well with the three-surgery process. As we are reminded daily, what WE want is not always what happens. The doctors are working hard to understand what will be best for Emma. We are supposed to meet with the transplant team, cardiologists, and the cath lab doctors sometime this week to discuss this further. Emma is stable and that is a good thing. They will continue to monitor Emma and see what will be best for her, but at this point, all signs seem to point towards transplant. Please keep us in your prayers as we take this next step. Emma is such a fighter, but it is hard to know how to pray because getting Emma on a transplant list means that our potential gain is someone else’s loss. Please keep the prayers coming.