A lot has changed since I last wrote you all. I know Matt kind of filled you in on Ellie's weekend. It was very stressful and very tense to say the least. With all that we knew, seeing her take what I saw was a turn was very hard. She was uncomfortable, struggling. As her mommy, I just wanted to take it away and make her better. Sadly, it was something I just could not do. Monday came and we talked to the doctors. This was and always will be one of the hardest talks Matt and I have ever had to have. The doctors here have looked at Ellie from every angle and the main fact remains. She is sick, very sick. At this point, the only way for Ellie to remain with us is a miracle from the Lord. I have said it before but I will say it again. I know if He wants to He can do it. However, after many talks with the doctors and nurses we have had to make some hard decisions. Decisions that as a parent you should never have to make. Ellie is not suffering let me tell you all that first. But, without a heavy amount of sedation and pain medicines, Ellie cannot be comfortable. So, with that said, Matt and I are in agreement to make her care from this point what we like to call a comfort care. They are not doing anything more than that. They are keeping her comfortable. They are giving us time to enjoy being a family. No interventions, unless it is that of the Lords, will be made. We are simply enjoying Ellie. As hard as this is, we are doing our best to enjoy every minute. With that beautiful face, it is hard not to.
I have to tell you all something yesterday because it really just blew Matt and I away when we heard it. Yesterday we were able to sit down with Dr. Greenberg and talk to him about Ellie and her condition. Dr. Greenberg was Ellie's first attending here and he begins his next rounds here at Children's tomorrow. He has known us from the beginning and is very close to Ellie's case. He has kept tabs on her since the beginning. When we talked to him yesterday, the first thing we asked him was were we doing the right thing in his opinion. His answer was yes. He told us as did Dr. Lim that we have fought above and beyond what most parents would do with a child as sick as Ellie. He told us from a medical standpoint her condition was just not livable. He was sorry to see it had come to this. Then he told us what in a way comforted Matt and I. He said that he had spoken with several doctors about Ellie. Each one of them had the same reaction. When told of her condition and how old she was, their response was, "You are wrong, there is no way she could still be living." He then proceeded to tell us that Ellie is a medical miracle. With all of the issues she has, she should not be here today. I was blown away at first and then I just smiled. I know she is a miracle. She is a miracle from above. Dr. Greenberg said she is still here in part because of the fight Matt and I had in us to help our baby girl. While we helped, God is the one who as allowed her to be with us all this time. How lucky we are to have our little Ellie.
After the meeting with Dr. Greenberg, we came back to Ellie's room to such a awesome surprise. Jessica had informed us that during her time with her precious Rebecca that she was allowed to sleep with her in a full size hospital bed. When we realized the point we were at with Ellie, she told me to ask for a full size bed. We have tried to hold Ellie a few times and it is just to hard for her to make the transfer from the bed to our arms. So our very sweet and dear friend Beth (Ellie's nurse) arranged to get her a bed. It was waiting for us when we got back. It was an orchestration to move in and move all of the equipment around that Ellie has for support, but once the switch was made, we were able to do something that is such a precious gift to us. We were able to lay right next to our precious Ellie Kate. She is comfortable and we are beyond thrilled. We have been able to lay right next to her as much as we want to. Matt and I took turns last night sleeping with her. I cannot put into words how that feels. I am getting to do what I have wanted to do for a long time. Just lay by my sweet, sweet girl and drink her in. I am memorizing everything about her. Her eyes, her lips, her hands, her feet, her chubby legs and her smell. Her smell is something that I will never forget. It is the sweetest smell and I love just breathing her in each and every moment that I can.
Before I go, I just have to thank you all for the support and love you have shown us, especially during these last few days. I am at a loss for words, overwhelmed by the outpouring of love and prayers that have been given to us. I am just amazed and I think always will be at how God is using our tiny precious beautiful baby girl to reach so many of you. I will never say it enough. I am privileged to have been chosen to be her mommy. She is my miracle and my gift. My precious gift.
Love,
Ellie's Mommy
