Day Seven

Saturday: 26th

After visiting our baby, we head back to our hotel.
The whole place smells like weed, but that's to be expected when Snoop Dog is in town. Plus I'm pretty sure he is staying in the same hotel as us. Considering it's the Hilton and there are two huge tour buses outside. Not to mention the big, scary, bodyguard-looking mugs that are walking around.

Anyway, we get to bed around 2:30 am. My internal alarm clock doesn't realize I don't have to get up with Monkey anymore and wakes me up at 7 sharp. I head downstairs, trying not to breathe in last night "festivities", and get myself some breakfast. For a Hilton, they sure don't give you much. If you choose to pay an extra $10, you can have a fresh-outta-Le Cordon Blue-graduate make you some pancakes. But for us stingy folks, you only get juice, milk, pastries, and coffee.

I go find a window to sit by and eat my breakfast. I realize, as I am putting jelly on my toast, that the guy sitting behind me must here with Snoop. He's talking about how they have another show tonight and how crazy it was last night. I'm not impressed though, with all that is going on, I have more important things to think about.
I know there is a Ronald McDonald house in the area, so I ask the front desk for a phone book, and give them a call. As the phone rings, I cross my fingers and pray "please have a room"...ring...ring...
"Ronald McDonald house"
"Yes, my son was just admitted to Ruby, what do I have to do to get a room?"
She tells me that they are full at the moment, but she takes my information anyway and tells me to call back around 2. She also says that even if they don't have a room available, that we can come by to use the facilities, shower, do laundry, and eat. They can also help us find a hotel at a discounted rate.
I hang up the phone feeling comforted. I know we can't afford $120/night to stay in the Hilton so it is so good to hear how much they are willing to help.
I head back upstairs, wake the hubby, and we pack up and leave to go visit Peanut. He is holding steady, his vitals are good, and there is no bad news. We spend some time with him then head over to the McDonald house.
Turns out it is right across the parking lot from the hospital.

They have a room! YAY! This is such a relief. After we fill out some paperwork, we get a tour of the house. There is a fully stocked kitchen and pantry, a huge living room and a play room for the kids. There is also a nursing room with two breast pumps I am more then welcome to use. We have our own locked cabinet to use, and a fridge. They only ask that we label the food in the fridge so others don't eat it. There is a laundry room and a game room we are free to use. The bedroom has two twins beds, a fold out bed, a closet and a bathroom. It is very plain but the rest of the house is gorgeous. As the girl shows me the quilt room, "pick some out for your boys!", I can feel the tears coming. The generosity and kindness that this house represents is overwhelming. The house is always full of parents whose children are suffering from illness or injury and it is completely run by donations.
She goes on to tell us, that by the end of our stay (which there is no checkout date) if we cannot afford to pay, then we are not obligated to. They understand that families come here with children who have costly medical conditions and they are not going to stick us with another bill. They only ask $12 a day, so it is very cheap, but families have been know to stay here for months at a time so it does add up. I'm so glad to hear this, I don't want to worry about bills right now.

We unpack our things at "the house" then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself "you're not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?"
I can't stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes a slap in the a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.

After dinner, we head back to the hospital to check in on Peanut. He is still holding steady, thank God, and his vitals are good. The nurse tells us that the doctors were talking about operating on Sunday but nothing had been decided yet. We ask her a bunch of questions she can't really answer, but she tries her hardest. She tells us to take those questions and write them all down so we can ask them to the cardiologist.

Back at the house, I sit down by myself in the living room to make a list of questions. I brought my ipod with me so I could listen to music but the songs are really getting to me. Specially "The long day is over" by Norah Jones. Even though it isn't about hardship or dying, the slow tempo and some of the lyrics make me cry. So there I am, curled up in a chair with my journal in my lap, crying. There are people across the room in the dining area eating. I just hope they can't hear me.
I can only cry and pray.
"Please God, don't take my baby. I want him here with me. Please don't make me a mother of a dying child. He's only 6 days old. I haven't seen him smile, heard him laugh, or watched him take his first steps. Please don't take my son."
My heart is breaking, the tears are falling, and my son is still sick.
I don't know how I'm going to do this.

God is amazing though. When I go back upstairs, after pulling myself together, I walk in on Hubby on the phone. It is a coworker of his, Joey, whose daughter has a heart condition as well. She has a condition called: cardiomyopathy-when the muscles in the heart are too big. When she was little she had to have heart surgery as well and her doctor is the same doctor Peanut has. Joey is telling Hubby that Peanut is in the best possible hands and if he doesn't know what to do, then no one will. He goes on to tell Hubby that he had his wife buy us some supplies in case we forgot anything. They had stayed in the McDonald house as well when their daughter had surgery. His wife will be coming through Morgantown on her way to Pittsburgh with their daughter. She has a doctors appointment the next day so they will stop by and drop off a bag of supplies.
What a guy.

After one more visit to the baby, we head back to the house and crash.
Hopefully, the next day will bring answers.