*updated* Heart on my sleeve and the tears came like a flood!

I am weak but He is strong. And thank goodness because it is not by my strength alone (my strength at all) that I have gotten through this. But I have to say, I have had peace beyond understanding this whole time. Peace that could only come from the Father. He created Ivy, how beautiful that the one who created her is the one who is comforting and healing her!! It just brings me such joy to know that He loves her more than anyone could ever love. Joy is eternal! What a perfect name for baby girl.

Today has its frustration and sadness. My heart is on my sleeve today because I can not stand to watch my child in discomfort or pain. I was told yesterday that if they intubated Ivy, she would be completely sedated for the 48 hour period that they needed to let her lungs rest. This was all ordered by the doctor on this floor, not my cardiologist and surgeon. He is very aggressive with intervention and is the one who tried to push the feeding tube on Wednesday. My cardiologists had surgeries all day yesterday so we never saw them. This doctor told me that a patient her age would try to fight the ventilator, pull it out and therefor would be completely asleep and very comfortable. She slept peacefully until about 10pm last night. She was up the rest of the night. I walked in very early this morning to a baby that was restrained by her arms and her legs, she was struggling, trying to wiggle all over the bed, crying without sound, grabbing at the tube coming from her mouth. She had pulled her feeding tube out twice already. Her right eye is so swollen on top that it looks like it is open when the other is closed, her mouth is practically taped closed, the feeding tube is taped in such a way that causes her nostril to be pulled upward and her skin is starting to bleed because of it. They did this so she would not be able to pull it out. Wouldn't her being asleep keep her from pulling it out. Why isn't she asleep. I have the most lovely nurse from the night shift. I think I snapped at her a little when I saw Ivy this way. No, I did snap at her. I quickly apologized, hugged her and began to sob. My heart is on my sleeve this morning. I feel weepy, even typing this, I just keep tearing up and having this ridiculous pitty party. I am Ivy's only advocate right now. She has no voice, but I do. Her nurse is a treasure. She hugged me and told me that Ivy has been through more in her short life than any one of these doctors have ever been through. She told me that we needed to demand that they up her medications and get her comfortable. Right now all they were using was what the ordinary 8 kilo child would need. But Ivy is not an 8 kilo baby, she is an 8 kilo toddler who has been a survivor all her life. She needs the sedation of a 13 year old boy!!! Yesterday I was promised that they understood that and that I need not worry. She was asleep when I left her last night. I do not usually leave her at 9pm but last night I did because she was OUT and I had nothing left, I was exhausted! I woke up at 4 and was back here before 5am. She had been awake like this all night. I had to lay on her to keep her from doing a back bend, this is not how I should be greeting her when I come in. This is not what I had expected to see. And I sobbed! Sobbed for my daughter who should be asleep and resting. 
The nurse reminded me that I am mom and I can talk to the doctors at any time. She reminded me that what I was feeling and thinking were very valid and the doctors needed to hear it.
So what was I thinking..... Besides what a cry baby I was being? Well, I was told yesterday that Ivy's lungs were indeed wet and not all open, but that it was not her lungs that were the problem, it was her heart. Ivy has a temporary pacemaker and it has been on her for 11 days. It is not working right any more, they usually change out the leads after a week and hers have not been changed. I was told yesterday that she will for sure need a pacemaker. So if it is not her lungs then why the vent?? And if she needs the pacemaker then why not put it in now. You need to be intubated for that surgery and she is intubated now so why not now? Her lungs are not working right because her heart is not working right... so can we please get her heart working right so that her lungs can do their job too? I realize that optimal timing would be when her lungs are at their best. Ivy is strong, she is a fighter, her lungs could handle the surgery, her lungs survived on 40% oxygen for a long time! Her creator created her so very special! I'm not a doctor, I'm probably clueless on everything I am thinking and saying. But rounds are in an hour or so and I am going to share my thoughts today and see what is the next step for my sweet child. After all, God made me her mommy to love and protect her. I can't just sit here and cry. Im done crying, It's time to put my big girl panties back on, its time to speak up.

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

I just finished with the doctors. I learned that Ivy was actually being given the sedation of what they would give ME to totally knock me out! And now they have upped it and she is sleeping. She is getting what a 200 pound man would get, that scared me!!! But they assured me that just the fact that she can push and pull and move while sedated is fabulous and she will recover quicker because she has been moving. Thank you Jesus!!! They agree, get her off the vent. But not just yet. They are taking her for a more detailed look at the diaphragm. Remember it showed a nick on the ultra sound but they were confident it would heal on its own. They want to make sure it isn't bigger than a nick...
After that, they will make a new plan. The new plan may be to extubate. My cardiologist wants to plan for the pacemaker on Monday. He is still holding on to hope that she will not need this metal box for the rest of her life. I choose to hold on to that hope too. Thank you again for lifting us up!