Hey everyone! Sorry if we had you worried yesterday because of no update. There has been no change in Ellie since I last updated. While they did cut her paralytic in half, Ellie is so sedated on other medicines that she has not moved a muscle. Let me take that back, last night we thought she might have moved her tongue a little bit. We still aren't sure though if that was just pressure from the vent causing her tongue to do that. The only thing she has done is clamp down on her airway a couple more times since I last updated. How is she doing this while she is on a paralytic? We have NO idea. Our only explanation can be is that it's our tough little Ellie showing us she is still boss. She had to be bagged early yesterday morning and late last night. That's how we can tell she is clamping down. They can feel the resistance when they are bagging her. I hope none of you all out there ever have to witness hand bagging. I can't describe it. It's not rough looking, but the sound and the realization that nothing else is working and this is all they can do to help her breath and get oxygen, is horrible, traumatic in a way. I hate all of this for Ellie. It's just not fair to her. This morning, cross my fingers she is doing ok. I say that very cautiously. Ellie is so fragile again. We have to watch now how we touch her, be careful when we change her diaper, she can drop her oxygen in a split second. It's so scary to see all of this again. I will be honest, at birth, we didn't realize how bad this was or could be. Nor we do and it's so heartbreaking. I am mad that Ellie is like this again. I am upset because she was doing so well and I feel we missed our window of opportunity to do something for her. Not anymore. Matt has spoken to a couple doctors or surgeons now and in a nutshell said we are done sitting around and waiting. He told them I want you to tell me that when Ellie gets to a stable place again, as SOON as she is there, we want a surgery plan in place and we want them to act on it. I think we might have gotten there attention with that. A cardiologist came in and spoke to us this morning. He let us know he had spoken with Dr. Manning about the chest expander again. The cardiologist said his goal today was to get Dr. Manning and Dr. Lim together and come up with a surgery plan. If they do the chest expander, it could be next week. They have to order the expander and wait for it to come in. Now whether it will happen next week, we don't know. Please please please pray for this surgery to come through and be a success. It's the thing Matt and I feel is the first step in making Ellie better. She has a long road ahead of her, a very long road. A week ago, we felt like we making progress. To be at the point we are again, is hard. It's even more difficult because last week she was awake and doing good. I miss seeing her eyes looking at me. I miss watching her arms and legs move. I miss seeing her move her little head around. I miss feeling her grip my finger. I miss my Ellie.
Please pray for Ellie. We have seen prayers work and miracles happen. It happened Monday. From what everyone was telling us and the way there were acting, we should not still be sitting here in this hospital room. The reason we are-our Lord and Saviour hearing are prayers. We can feel them and see the results. Please also pray for Matt and I. I hate asking for prayer for us. Ellie is the only one that really needs them. Matt and I are just tired and worn out. We are frustrated. We are hurting for our baby girl. We just want her to be healed. My prayer is not only for Ellie to be healed, but to be able to write you and all rejoicing in the fact. That will be the sweetest day when I can do that.
I PROMISE, as soon as we hear something from the surgeons I will let you know. Sorry again for not updating yesterday. With everything going on, I couldn't really concentrate on writing. I had to think before I wrote. I hope/know you all will understand.
Thank you all again for everything. Your prayers, support and love mean everything to us.
Love,
Ellie's Mommy
