Reality

Exhaustion finally hit at around 12:30 last night. Cullie and I both passed out relatively quick. It is important that Levins gets as much breast milk stored as possible, so Cullie wakes up every 3 hours to pump. Her strength through this amazes me. I heard her call the NICU around 3:00 am just to check in and see how Levins was doing. Everything was good so she went back to sleep.

I will admit I woke up this morning and realized again that everything was real. It is not the fact that I don't want to deal with it, it is the fact that I hurt for Levins. The waiting game for everything is tearing me up. I was not prepared for that at all. I tried to mentally prepare,  but I will be honest and say that I'm not sure many people could mentally prepare.

We went up to the NICU as soon as we woke up. Levins looked so peaceful. I wanted to take all the cords off of her and take her home. I then could hear the suction from in her mouth making noise. I know I can't take her home now but it still would have been nice. Updates this morning seemed to be the same as when we left the night before. Levins had a big day planned though. She had an echocardiogram, kidney ultrasound, genetic testing, stretching the esophagus for the first time, and surgery. The echo had no change. This is good and bad. Kidney ultrasound came back normal. That was exciting to hear. We are still waiting on genetic testing. We know the results, it is just a formality in diagnosing genetic abnormalities. Her first surgery did not get scheduled today. It is nice not being the emergency situation, but it still has to be done soon. Last was the first stretching exercise. I'll admit I did not do enough research on this before it happened. I went up to the NICU with Grady and the nurse went over the procedure for me. It scared me to death. She said Levins held her breath for a while, which means she was not breathing because she thought she was choking. Her O2 sats dropped pretty quick and the Doctor had to work his magic. They got her levels back up before we walked in.

It was very surreal hearing that situation. It just showed me how quickly things can change. The nurses seemed to act like it was something to be expected. Like I said I didn't do enough research on the procedure.

I am home tonight with Rett, Mimi, and Auntie (my sister). Cullie and Annie are at the hospital tonight. We are trying to balance both girls right now. Trying to make sure we do not neglect Rett during this time. She is struggling to understand the situation. She also wants to see and hold Levins. She knows she is a big sister now and does not understand why she is not home with her.

The ride home was long. I realized I am a little edgy. Someone just gave me the one finger salute and rolled down his window to yell at me. I think he was mad I didn't merge over in front of an 18 wheeler. I will admit I am not too sure he will be pulling that stunt again. He got this stressed out Daddy blow up on him. His little Honda Accord accelerated pretty quickly when I let him know what I thought about his shenanigans. I honestly wouldn't have drug him out of his car, but I felt like he needed to know I was having a rough day.

I did a lot of praying on the way home. I prayed Levins would keep up her fighting. I prayed Cullie and Annie would have a good night with her. I prayed Rett and I would have a good night. Rett and Auntie met me in the driveway. Rett gave me the biggest bear hug a 2 year old could give. It was honestly the best hug I have ever had. I needed to see her just as much as she needed to see me.

Tomorrow I am going to wake up and thank God that we are still fighting. This dream is a reality now and we are going to tackle it. We are taking it one hour at a time. Pray for us tomorrow. Cullie will be discharged tomorrow. It is going to be tough because she will not want to leave Levins. I do know that Rett will be ready to give her the best hug she has ever gotten. The only one left to get a hug will be Levins and it will be soon.