It's quiet right now and still. Very still. For a moment I can forget all that has and is going on in our lives right now. You will have to forgive me as I write this because I am not sure how and why I have to say this and I am shaking. Shaking because I am terrified and scared. Scared of what lies ahead. Scared of how to tell you all what we now know. This isn't something I want to do, so help God help me as I write these words.
Dr. Lim came to us last night around 6:30. I knew by the look on his face that what he was about to say was not good. I was scared because in my heart I was in the first few seconds of having to face a reality I knew but didn't want to see coming. Ellie's condition has worsened. Worsened to the point where surgery or any other intervention is not an option. I could try to get technical on you but I don't understand it all and honestly it doesn't matter. The short version is this. Ellie's lung is failing. It is not growing with her beautiful little body. Her hypertension has worsened to the point where they think in a short time it will begin to damage her heart. Her strong little heart. Her main artery is now four times larger than it should be and pressing against her bronchus tube thus making it almost impossible for her to have an airway. Dr. Lim finished his discussion and then began to talk to me about the next steps and how we can spend some time with Ellie. He said he believes we have a few weeks left but he can't be for sure about that. What he can be sure about though is that he wants us to hold Ellie again. He was so upset. So upset in fact that when I began to cry, he hugged me, hugged me for a long time. He explained to us that this was one of if not the hardest cases he has ever seen. In part because of Ellie's anatomy and because of us. He knows there are some parents that could just not handle the situation we are in. He believed we could with all of his heart and had tried everything he could to get Ellie home with us. He wants to be wrong and has sent out for several other opinions to hope he is wrong. I cannot tell you how much I respect this man.
We are now in a phase of this journey that I never wanted to be in. I can't tell you what is going to happen. I don't know where each day will lead us. Doctors and nurses have already begun the process of telling us how we can enjoy these last days we have Ellie. But can you really enjoy it? I am not sure. I am going to try my best to forget what is happening around me and just take that little face in each day and love it as much as I could in a lifetime here on earth. I am still going to pray for a miracle from God. I know he is capable of it. I just think the miracle He is giving us is not the miracle we wanted.
Please pray for all of us as we take this next step in our journey. We need it. Please pray that Matt and I will know what to do. This is hard, so hard. Words can't and will never be able to describe it. I am still going to do my best to update you all each day and let you know where each day leads us. In turn, I am going to pray for you all. You all have been attached to us since learning of our story. I know your hearts are heavy. Please what I ask of you is do not give up on your faith. God is with us still. Maybe He is not giving us the outcome we wanted but He is still with us. Matt and I are clinging to that right now. He has led us through some very rough and choppy waters, but He is still with us. I told you all a couple days ago, that Ellie's life here has a purpose and it does. God created the most beautiful masterpiece in her and I am lucky enough to be a witness to it. So are all of you....
Please continue to pray.
Love,
Ellie's Mommy
