Home with Caveats

We are home.

This morning they released us from the hospital and a couple hours ago the whole family reunited. It was heavenly sweet to finally all be together and free from the constant beeping and tethering of the monitors. My eyes have still not adjusted to the brightness of life outside the hospital.

Miles is a miracle baby. Countless doctors have told me equally as many times that there will be papers written about him. (How do you respond to that? Oh..? Smile and nod...) From the moment he was born they expected to intervene - surgery seemed imminent, and unless his heart showed drastic improvement we would not be able to go home. But one by one they removed various wires and tubes and though his heart hadn't improved he was still doing great. They couldn't justify doing a risky surgery when he wasn't showing any symptoms of cardiac stress and knowing that over time the tumor should shrink and he should grow. So they've started him on a chemotherapy drug that has proven in a handful of cases to reduce cardiac rhabdomyomas with the hope that the drug will accelerate the reduction of the tumors and Miles will keep trucking along proving to everyone just how strong and miraculous he is. He will be seen twice a week by doctors with echograms once per week and the cardiologist let me know not so reassuringly that they would be sitting on pins and needles between appointments until they started seeing improvement.

The drug he is on is an immunosuppressant and so the greatest risk to Miles right now is even the smallest of infections. If he were to get a cold we'd be right back at the hospital. The doctors have given us strict orders to put in place at our home to help keep Miles safe.

1. When you come into the house, phones, purse handles etc. must be cleaned with Lysol wipes.
2. If you've been in public areas or around sick kids, clothing should be sanitized if you'd like to hold the baby.
3. Following accessory cleansing, everybody must sanitize hands and arms.
4. Everybody sanitizes again directly before holding the baby.
5. If you are at all sick or potentially sick we ask that you do not come in the house.
6. If you have to be with Miles but have even an inkling of a cold, we have masks for kids and adults to wear. 

Given these complications we probably won't be up for playdates for a while but maybe some outside activities once we get settled and I figure out the daunting task of juggling two kiddos. 

It's a long road ahead with many doctors in our future but we are home.