5 times

Please read this entire post before watching the videos

The brutal honest truth

Some things, Iv'e never told you, some things you'll wish I'd never told you, and some things you already knew but as a mom of 6 kids, I like to repeat myself.

I'm getting a little tired of looking at this open fleshy chest on my sweet girl. Enough is enough already, it is icky and tomorrow morning can't come soon enough for that.

The first 24 hours post op, Ivy didn't even look like Ivy. Well to be honest with you, she still doesn't look anything at all like Ivy, but on that first day it was worse. It was tough. The room was being kept at a meat locker like temperature, there was quite a lot of blood still draining, chest wide open, and then her little body paralyzed. Her eyes 3/4 closed, looking so far far away. I'm sorry to tell you it was really hard to look at her. To sit there and remind myself that this was Ivy. But I have done this 5 times now and just as it hasn't gotten any easier, it really has actually become more painful. I just can not believe that the story we are living is really honestly truthfully about a child who has been through 5 open heart surgeries in 10 months but 4 in the past 10 weeks! How on earth could one child, so small, so sick, be so strong? Do you think God intended for her to stay in China? To die in China waiting for a family? I will be absolutely honest with you again, I questioned my desision to come to Boston when I found out that rounds 1,2,3,and 4 were still not enough. I never wavered in my decision, but I questioned if it was fair to Ivy.
That this precious child who still had not been set free, would once again go under the knife. I wondered if the child I thought needed us and we knew needed her, was being put through Hell because of us. And as I said goodbye to my kids at home, dreading the journey we were about to embark once more, after a thousand tears were shed for my childs suffering, I was awakened. And God reminded me that if we were not to by Ivy's parents, He would have closed every door that lead us to her. He would have made the money go away, the approvals never happen, the desire of our hearts to fade, and the road to China a distant memory. But that was not the case. He made a child with the will and the strength of a giant! He made her just the perfect way that she is. He used her because she is that special to Him, that favored by her Father! I know it sounds crazy and trust me, I would not have minded if He chose another child instead of this one, but her didn't. He chose Ivy and he chose our family and he equipped us and thats that! I know this. But I wanted to journal here that I did have doubt, that I did question if we were doing the right thing by trying to save Ivy's life. And of course we were.  It just hurts to see her suffer so much. And it hurts to always be in the wrong when you tell her, no more, this is it! 

 Another thing I have not told you is that when Ivy came back from the OR on Saturday, they told me that they were going to do a CT scan on her brain. Her pupils were asymmetric and while it was likely caused by the massive drugs, it could also be that the dialysis had caused her brain to bleed. Panic of course kicked my butt. As much as I wanted to cling to the words, it's likely the drugs, I just didn't have a good feeling. You know the old saying, if it could happen, it happens to Ivy. Ya, I hate that part too..
Anyway, they did the scan and sure as day, blood!
I was a nervous wreck. For a while... And then I remembered that whatever it be and whatever it lead to, It's out of my hands and she will be exactly who she was created to be. There were CT scans through the night and yesterday was her last one. The blood is not in the brain, it is on the upper left side of her head between her scull and tissue. The blood is separated. Something that usually takes a good week or so to happen. This means that the cells have settled at the bottom and the fluid is on the top. So this tells us that the bleed did not happen as a result of her being on bypass, it also did not happen due high blood pressure and the blackout she had on the day we ended up in the hospital. These were all being said as possible, but not anymore. 
The new said diagnosis is that it happened as a result of the TPA. Her Asymmetrical pupils were like that from the meds. But they lead the team to performing the CT scan. Neurologists were in her room a great deal that night. At least every hour or two. Everyone with their own theory. Until they heard she had been on TPA. When I told them that her every wound from her surgical history and lovenox injection site, picc site and IV's were all oozing with blood by the last day of the TPA they concluded that the timing and the looks of the blood all matched. What did not match was that it was in this free space, no pressure on the brain at all, not in the brain at all, just minding its own business. And while I thanked God for that little space and that little miracle, I remembered something. Thursday night, Dr Baird was in our room. He told me that he wanted to do another round of TPA on Ivy. He said that sometimes it takes 2 to 3 rounds to break a stubborn clot. I was more against it than anything I had ever heard. And this man..... he knows what he is doing and I totally respect and trust every decision he makes for our child. I adore this man and the attention he has given our daughter! But something brought out the mama bear.... and the mama bear said NO. I told him how much I respect him and all of his choices for Ivy. And then I explained to him how Ivy had escaped a brain bleed that first round and I just didn't have a good feeling about doing it again. I told him that I went in to every single fluoroscopy with her and there was no question that the valve leaflet had zero movement each time no better than the one before. I told him the doses that they did and how they doubled and tripled it. I told him it was on her for 48 hours.  He told me that he too didn't think it would change much but that he just hated the thought of opening this poor baby up again if he absolutely didn't have to. The visit ended with a mutual agreement that we should move forward with surgery. In the end, had we run the TPA, what would have happened? I don't know, obviously it would not have changed the fact that there was scar tissue stoppin the valve from working, and clearly the rest of the story would not have had a happy ending. I'm glad I trusted my gut and now I know what you all mean when you keep saying that I was so much meant to by Ivy's mom. 
And so the great news is that the old blood is being absorbed by her body, there is no bleeding going on and it is not near her brain. They will follow up with a few more CT scans before we go home but that is all for now. She was acting completely normal before her surgery and that gives us all the information we need to know.
She does need to start getting post operative anticoagulant pretty soon. So the neurologists are meeting with the cardiologists tomorrow to discuss what would be the safest route to take with Ivy. There is no better place for us to be than here where they take such precautions and do so much more than the average joe!

And it's with great joy I tell you, Ivy's cardiac function and overall healing, continues raise the roof in room 9! EXCITING!!

And I leave you tonight with the most fantastic news. A bit of something only my family knows! Tonight, Ivy woke up!!! They lifted the paralysis meds and she started to move a little. Very little. They call this a holiday. It means that they leave the paralysis meds off just long enough to see her move all of her extremities and be sure there are no issues. Well, fully sedated, the next thing I know, with her eyes still 3/4 closed, she started kicking and waving. She was pointing with her poor little splinted hand. She had no idea where she was pointing, but she knew she wanted water and she knew there had to be some around here somewhere!!!! She squeezed my hand. She pushed her blanked off of herself. And when I asked her if she wanted a sponge with water she nodded yes. Remember she has the sedatives of a horse going in her and she is responding to me!!!!! And when we brought her the tiny sponge with water and she saw that it was not a water bottle we were offering her, she pushed it away and shook her head NO and tears streamed down her face. 
The video I am about to post is so extremely personal. So incredibly private and so very raw. And yet I share it with you because you need to see what a miracle she is. You think you know, but you have no idea until you have seen it 5 times! Look at what she has gone through 5 times!! You think lifes not perfect? You are right! It's not! But it is what you make of it and by golly this baby is making it GOOD!! Lives and hearts are made new! Because you fell in love. With a little girl!