She is also missing her pulmonary artery that goes to her lungs. This never formed at birth and her body has had to find a way to survive without, but it is not enough for her to sustain life and will continue to worsen.
Her oxygen level was 66 today and they took it again and it was 69. A normal heart should be at 100 so this is very very low.
We will have to go to Egleston to do a catheter on her to be able to tell everything before they can plan for her surgery. When they do that she will be fully asleep and they can draw blood, and do an extensive ultrasound as well. After the catheter her case will go before a board of 20 doctors to discuss the best possible way to go about helping her. This will not be a one time fix and we have to move on this very soon, the doctor said that from where he's sitting he would emit her into the hospital today but wants to try to give her a few weeks home. He told us to anticipate open heart surgery in the next 3 months.
This news is overwhelming and I cried for most of the day yesterday and even writing this I realize how I knew all this from the beginning and I should have been prepared. But how can you prepare your heart for something like this? There just aren't words I can put for all the emotions we are feeling. I'm just so heartbroken and scared for her. Our precious child will have to go through so much and I'd really hoped she could have more time with us before she had to.
Yesterday was also two weeks since we first met Ian and Jovie. We are still learning each other and growing together as a family. These things don't happen immediately... But as they are growing to trust us more and more it's amazing to watch each of their personality coming out. For a year we longed for them and now we get to know them - I am so humbled God made them to be our children, and that we get to learn their every freckle, their fears, ticklish spots, and likes and dislikes...
We are still struggling to get much sleep through the night with them waking up crying - this morning was another 4am start to the day and I was worried we'd have trouble getting to our 8:50 doctors appointment - well I think we had enough time to get ready.
I love these pictures of Ian and Jovie playing in our pantry. I love seeing the interactions between our children. I can't wait until all three have really bonded together as brother and sister.
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