When you came out, you looked blue. The nurses said you did not have good oxygen saturation levels and sent you to the nursery for a little oxygen help. Shortly after, they found a heart murmur. A doctor did an echocardiogram (an ultrasound of your heart) in conjunction with a heart doctor at UNC in Chapel Hill. He said you had aortic stenosis and should be airlifted to UNC as soon as possible.
I was discharged and you were transferred about 5:45 pm on March 22nd. Jared and I grabbed some items and took Kathryn and drove to the hospital.
It's been 24 days. You have hypoplastic left heart syndrome, a leaky valve, and aortic stenosis, Your heart formed incorrectly in the womb and it wasn't caught on ultrasound. You did "perfectly" in the womb, in fact. But now that you're out, your heart can't work correctly on its own. You're on a constant IV medicine that is keeping your heart working. And you've been on oxygen for a week and a half due to some seemingly unrelated issues with your lungs.
You've been on the waiting list for a heart transplant for nine days. Your heart doesn't work, and any surgery is too risky because of how damaged your heart is. So a heart transplant is our only option, as a chance for you to live. A donor heart could come in any day; but it also could be eight months or more.
If a heart comes in, and the transplant is a success, many things will change about our lives. You will be on lots of medicines the rest of your life, and have lots of doctor appointments. You may get sick a lot more than other kids. We'll have to keep the house very clean and not cook rare meat. You'll have to stick to fruit that is peeled, and won't be able to be in daycare, at least for a while. And, we honestly don't know how long we will have with you--rejection of the donor heart is always a concern.
But we love you every day we have you. Which is all any of us can do with anyone we love.
This has been almost surreal. So many--I mean, hundreds of people--are praying for you and for us. And many people have stepped up to bring us meals and give us funds, take care of Kathryn and bring her special treats. We've had such peace, even as we go through all of this with you.
I don't foresee keeping up this blog anymore. I'm keeping written notes every time I drive to the hospital or call from home, or they call me. Naomi, I hope and pray that this part of your life is brief and quickly behind us all. We love you every day.
April 12
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