Monday, July 22, 2013

Ray of Light

The last couple weeks has been 1 day after another of the same thing day in and day out. Wake up, go to the hospital, go to work, go to the hospital, go home, go to bed. During our time at the hospital I hear the same thing day in and day out. It's a waiting game, we will just have to see how she does, we want her stats to be better before we do (X), Capri is doing better today, Capri had a rough night last night. I get the feeling the last while that I am living the true life of the Bill Murray movie Groundhog day. Every morning I wake up, I can tell you to the minute what my day will look like and what my plans are for that day. It often feels like the world I live in is black and white and someone pressed the mute button.

Today is Monday, I am kind of shocked to hear myself say this but, today when I woke up, I thought for a second and realized "today is a great day"!!!  Yesterday when we went up to Primaries to see Capri it turned out to be one of the best days I ever could have hoped for. I met Kendra at the play place on the 3rd floor. She starts to tell me that Capri is doing really good and she was awake for a while during her time with her. I smile as that news is much welcomed. There is part of me that says "I have to see it to believe it" as I know that Capri has good moments and bad moments, it just depends on when you are in the room as to which one you will see. As I walked up there I thought "I hope she is still awake and happy, maybe she is going to be good all day today, that would be wonderful".  I walk in the room and see the same thing, nurses standing at her bed side running checks, tests, moving sensors around to get a better reading, monitors flashing stats, and my baby girl is the center of attention as always... sleeping. "Hello" I say to the nurse as I walk up to the bed side and sit down, "hello dad" the nurse replied.  I asked the same question, "how are things, anything new?" As I stare at Capri laying in her bed the nurse replies "Capri's stats are looking great so far, and she had a great night last night".  I pause for a minute as I realize that I heard the word "great" in that sentence. I perk up and ask the nurse to expand a bit.

The heart medication was removed on Friday at 11:00 a.m. and the valve is now able to close. It might take a few hours, it might take a few weeks. As mentioned in a previous posting, the first time she was removed from her meds, it took just over 2 days when it closed. Sunday when I am visiting, it has now been 2 days and 3 hours since it was removed. I look up at her monitor and see that Capri's oxygen level reads 89 (since born, her average is between 72-86). The nurse says that she has been active, awake, good oxygen levels, her heart rate is great, blood pressure is great, I start to feel some excitement. The nurse then says "and we were able to turn the respirator down from 40 breaths per minute to 30 breaths per minute. we also turned the oxygen mixture down from 76 to 54%". I am sure I know what she is getting at, but I want to hear her say it as I ask "what does that mean exactly?" It means the machine is giving her less oxygen and less breaths of the oxygen every minute, and her stats are staying the same as before. If we do the echo tomorrow morning and her valve has closed, it means her heart is working.

I cannot believe what I am hearing as I am smiling from ear to ear. I look down at Capri and I reach out to her and put my hand on her head. I start to rub her soft thick hair as I notice that her eyes open up and she is looking right at me. Not the mad, upset glare, but the well rested, refreshed, hello daddy look. She kept her eyes open for 10 minutes or so and just looked around the whole time. Nurse informs me that they started giving her breast milk for the first time of her life. 1 TSP every 2 hours. It is not much, but it is something, and it is a big step forward.

I leave the room and take a walk in the hallway for a bit. I come back and My brother Doug and Annie are there to visit. As I take Doug back there we sit and stare at her laying there with her eyes closed. I am talking with the nurses and Doug is focusing on Capri. As we stand there her eyes open and she stares right at Doug.  I move in and when Capri looks at me, her eyes close. Capri had this real fascination with Uncle Doug, and I was only getting in the way. Doug started talking to her and she calmingly opened her eyes again and looked up and stared at Doug again. 20 minutes goes by and I lean in to say goodnight and she gets a little upset that I am blocking her view of Doug so I quickly retreat into the background. She continues to stare at Uncle Doug as if they are having a conversation or something.

It does not matter who she wanted to stare at whether it was Doug, myself, Kendra, or anyone else, she looked happy, and I could not have asked for anything else.  So yes, today I woke up and I felt great again, I see vivid colors, sun shining. Today is going to be good....