Tonight we received a ton of information, all discouraging. There are a million possibilities and details, all of which are over our head medically and too difficult for me to explain again. The details don't really matter, the point is, we got a lot of bad news all at once.
What's important is how you can pray. We need a miracle like we have never needed a miracle before. If Hope had a whole heart, her ability to deal with all her 'extra' problems would be much better. The small problems are HUGE issues when you add Hope's heart condition to the equation. The ascites in Hope's abdomen is one of those huge issues. If it does not repair on it's own immediately, it could take away Hope's potential for all of the surgeries she needs.
My dream would be to wake up tomorrow with Hope's ascites completely gone and her abdomen no longer distended. At this point no one wants to touch Hope, none of the surgeons in cardiology, general surgery or GI. They all see her as a ticking time bomb that no one wants to touch and be responsible for. If anything is going to happen and move forward, we're going to have to fight for it to be done and take responsibility on ourselves if it's unsuccessful. This is the most horrible feeling I've ever had in my life. How do we know, as non-medically trained people, what to fight for? Could we live with our decision if we pushed for something that turned out poorly, or didn't push for something and Hope suffered as a result?
I am completely broken, this has got to be my breaking point. Where is the light at the end of the tunnel or the level where God steps in and decides you can't handle anymore? I feel like one of the Israelites in the Bible, walking through the dessert in search of the promised land. I stand amongst them and yell, "How long oh Lord?"
We need wisdom and discernment, we need massive wisdom for our medical team. We want them to tell us what has to be done and to make the best decisions for Hope. We are heart broken and completely overwhelmed. We know that so many of you pray tirelessly for Hope and our family. I will go to no end in the fight for my daughter, so I ask you to continue praying. We need a miracle, one that only God could give.