Saturday, June 29
Last night while in the play area at primary children's I met a young man who was at primary's for a surgery. He very proudly told us he was here for his 130th surgery. He couldn't have been older than 13.
I got back to my room and it hit me that that could be our daughter. She could live most of her childhood in a hospital. In and out of surgeries, always in pain, never getting the chance to have a normal childhood. And what does that mean for my other 2 children? What kind of mom are they going to have? How do i decide where to be? A's tball game? B's ballet recital? Or the hospital with C? If something were to happen and I wasn't by Capris side i would never forgive myself. Knowing that she took her last breath alone. But A is already struggling with not having his mom around and its only been 4 days. Is this my new normal? I want to go back to the stress of should we take the kids to the planetarium or the water park. which place will they have more fun? This is too hard.
I finally got to sleep and woke up this morning angry. Angry at the world. Angry at the Drs. Angry at myself. This isn't fair. We don't deserve this. We did everything right. I dont want to be here. I don't want to deal with these emotions. i want to push them all deep down and hope they just go away. As I laid in bed looking at mike sleeping on the couch I was mad at him. Why are you sleeping? Why isn't your brain filled with all of these things? Why arn't you breaking down in tears every 5 minutes. Why cant you express your feelings like I do? Why do guys have to process things so different. I want you to open up to me. Talk to me.
The nurse came in and asked me if i needed anything. I was mad at the way she looked at me. Her tone of voice bugged me. I was just mad at the world. I decided to take a shower to see if the steam would help my cough. I put on pandora then turned the shower on as hot as it would go . I want to dig a hole and hide from everyone. I don't want to face this. Sobbing in the bathroom alone, crumpled on the floor Colbie Caillat singing in the background. I know i should not be thinking about all of the "what ifs" but i cant help it today. My brain just wont turn off.
Mike took me downstairs for breakfast and talked to me about everything. He always knows how to melt my heart and make everything okay.
This afternoon Capri had to do a test on her heart. her heart has to fluctuate at least 15 beats 4 times in 30 minutes. She has never passed this test. Her heart rate stays right at 130-135. After she failed we had to do a BPP.. another test but with an ultra sound this time. With this one she has 30 minutes to pass 4 different tests. 1. how much fluid is around her (that ones easy) 2. her legs and feet have to move 3 times. 3. her body has to move 3 times. And 4. Her diaphragm has to "beat" for 30 seconds continuously. That is the one we worry about because we don't know if she has lungs that are developed or not. She took a little longer than 30 minutes but she passed. I get to keep her inside for at least two more days. We will re test on Monday.
Monday is going to be a big day. Capri has a test to make sure she has no more fluid in her chest or around her head. If she does i will be induced. I will meet with a social worker about getting moved to the Ronald Mcdonald house or possibly go home and play the waiting game. We will still have to drive in daily or every other day for tests but i wont have to stay in the hospital. And lastly we will meet with our entire team. The neo natalogist, the high risk ob, the Chief of ped cardiology. We will come up with a plan of action and have them tell us what they are honestly looking at for when she is born. I am anxious for this meeting
So far i have gone through Sadness, scared to death, shocked, optimistic, hopeful, angry, and bitter. Tonight I am back to numb. As i lay here in bed I really dont have any feelings. im not happy or sad. Im just here