So the ECHO results were not the best news – her pressure in her heart/lungs is higher than her body, when at the last ECHO post birth they were equal. Add to that her PDA valve closed (many times in CDH babies this valve stays open which can help alleviate pressure) which means her right side of her heart is working much harder than it was designed to. Also, it can only operate at that level for a finite period of time. This means they need to be a little more aggressive. Step one is the Sildenafil. If she doesn’t show some improvement by Wednesday, they will add the Decadron into the mix. The hope is that they will be able to use these medicines to start making some things happen so that we can achieve the previously mentioned goals. The other disconcerting news was that even though ECMO has not been on the table as a consideration yet – it has always been out there as an option, but the doctor mentioned today that there will be a time when it isn’t an option any more as her time on the high freq vent and other factors make it something that won’t help. One thing that struck me that the doctor kept mentioning was how there are a number of factors that are out of his hands- how her anatomy was made (how god created her) and how the die has been cast already with many things – things set in motion that he can’t help. All I kept hearing is this is in God’s hands. The doctors can try these certain number of things – but this so truly is in his hands.
God, I know you are a God that can work miracles – that is what we are asking for today- work a miracle in my precious baby.