Loving life with Lexi & Ivy Joy

Pin It So much to say!!! I just don't know where to begin. Last night by the time Ivy got to her room, I was becoming too frail for a mommy. I felt my heart begin to droop a bit and I know I was telling myself to put on my big girl panties and accept that God's will for Ivy may not be as I had hoped. I pulled Bryan aside and reminded him that we would not stop giving God glory in this storm and no matter how the storm resulted, God would be glorified. We have been given more than we could have ever asked! We are in love with our daughter!!! She has taught us more than we could ever teach her! By the time my head hit the pillow at the Ronald McDonald House I was exhausted beyond measure. Mentally mostly. I had wanted to do a blog post to let you all know where we were but there was no wifi in our room and I was too tired to go downstairs on the public computer. Right before I hopped in bed I sent an email to my sweet friend Diana who had been with me by phone, texts and emails all day. I wanted her and a few other close friends know where we were at that point. When I woke up this morning I had an inbox full of precious, heartfelt, amazing comments from people who knew exactly what was going on? I was blessed by every one of them! And yet, how did they know? It was then that I got a much needed phone call from Diana. She said that Emme had waken in the middle of the night so after tending to her, she checked her email. When she saw my note she thought it was a blog post and she immediately posted it for me. When you all woke up, many of you were on your knees in the middle of the night, many fell asleep in prayer for Ivy and woke in prayer for Ivy, but you woke to a blog post that happened for a reason. Surely God knew I would need encouragement this morning. Surely He knew that you all needed specifics as you stormed the gates of heaven for our baby girl! Surely He knew!!! And I read them over and over and can I just tell you how Amazing you all are!!! How amazing that there are thousands of people joined by 1 God, stoking the gates of heaven, crying out to our Heavenly Father, on our knees, in our cars, in our beds, in our bible studies, in our churches, in our schools, in our offices, in coffee shops, in your own hospital room. Some of you I have met and most of you I have not, yet that doesn't matter. We all have the same intention, the same request, the same love for one tiny girl who has fought her whole life and will not be stopping that fight. Just look at her team!!! You and you and you and you and me!!! We are so blessed by TEAM IVY!!!! 
And to top it all off, I can pull up the news feed on Facebook and the whole entire feed is request after request from so many Facebook friends, To Pray For IVY!! God is so good, he has used all of you to minister to me, to walk alongside Ivy, to love on us from afar! 
Thank you!!
And now for an update on the Little Princess.
She is resting, she is not in pain and she is making the doctors and nurses happy!!!
She is being weaned off of ECMO, she did ok going down to 30% but they do not want to go any lower at this point because her little body needs to rest. She is ventilated.  She had an Echo this morning. They have given her more meds to paralyze her body due to lots of movement happening earlier.  She opens her eyes when she hears my voice and she squeezes my finger when I touch her. She loves her mommy :) Now that they have given her the new meds, she does not move at all. This is just temporary though, it only lasts a few hours.
They did not get a smaller valve, they used the 19mm one that they have had all along this entire month we have been waiting. He told us this morning that that big valve may be part of our pressure problem and she will just have to adjust to it. 
The pressure in her lungs is still very high. The pressure in one of her pulmonary arteries is very high and was pushing against her aortic valve. These things will be looked at through another heart catheterization which she will likely have tomorrow or Wednesday. 
A lot of info I know, but who knows who this might help some day down the road that is going through the same or similar thing. 
Finally,
I have gone round and round on whether or not to post pictures of Ivy right now, in her present state, as she recovers. I know that for me, if I were able to look at someones documentation of a surgery and battle like this and see the here and now, the before and after, I would find that so helpful. And I am taking photos because this is part of Ivy's story and I want her to see what a worrier she had to be to get that scar on her chest. But to post or not to post... That is the question. The technology is amazing, the work that all of these machines are doing... astounding!!! I think everyone would be amazed by it, and amazed by her!

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