Monday, April 4, 2011

Vada's Newest Heart Pictures and My Newest Fears

Today I took Vada to our local hospital for a chest XRAY. This up coming Friday we go back to Peoria to meet with the Cardiologist. As things stand right now we are only doing this XRAY. However, if her heart is in a questionable condition, then we will do a unscheduled ECHO.

This is the second time that I have held her XRAY in my hands. Last time I didn't look at the disk. I don't know why but I never thought to do so.  In fact at this moment, after reviewing this current XRAY, I am kicking my self for not looking at the last one when I had it in my possession. Actually, I am kind of kicking myself now, for looking at this one but that's me.

Truthfully, I am not one of those people who wait and think of only happy thoughts. I try to be, my husband is, for the most part and I think that his optimism is a testimony of his trust and faith in God, not that I don't share those same things. My upbringing was just different than his and it has caused me to see things and deal with things differently than him. My past has molded me into who I am today. I am an all or nothing, tell it to me straight and don't sugar coat it type of person. Rip off the damn bandage and screw the the raw patch of skin left behind from doing it. I would rather know what I am dealing with upfront no matter how severe, rather than figuring out the degree of a situation on my own.

My personality has brought problems in the past. I often worry myself too much and annoy others from doing so. Ill admit that sometimes knowing isn't always the greatest thing but I would still rather know than not. I cant help the way that I am, I mean, I control myself but as much as I hide my feelings and thoughts, I still feel and think them. I love Vada and I am scared to death of loosing her. I am scared of the prolonging of her heart repair and the surgery in general. I am terrified of her seizures and what they can do. I'm scared of the medications that we will have to use if the seizures do come back. This is all scary to me. Do I enjoy her any less because of my fears? Not a single fraction of a bit. I enjoy every moment with her. She is an amazing baby and I am proud and grateful to be her mother. I refuse to let my fears consume the time that I have with her or with anyone else in my life. I keep my eyes forward and I charge through each and every battle that arises because it is what I do. I am a fighter I always have been and I always will be and I know that Vada is too.

Wow, what a rant...
Anyway, lately, I have been a little (yes, a little) concerned and at the same time grateful for this up coming appointment. I haven't noticed anything different or even concerning in Vada except for one thing. I mentioned it on Sunday to my pastors wife and to one other person. Often people look at me as if I am a "worry wort" or irrational. It's possible that I am a bit of both but to avoid the comments and the looks that are often shared when I express myself, I have withheld these new concerns and maintained my composure. Now that I have looked at this XRAY, I am even more concerned than I was. Go figure.

Vada put me on alert about a week or so ago. I can not pinpoint the first moment, but several moments altogether do stick out. Vada laying on the floor playing, babbling, just waking up, after crying and in her car seat when doing nothing what so ever except for sitting. She has begun panting. At first I thought the seizures were back. Vada always had rapid breathing through her seizures. (Click here to see video's of Vada's seizures. The first are the most accurate. They were done before she started ACTH and are without doubt West syndrome/Infantile Spasms.) 

Over the past week I have pulled over twice to watch Vada during these odd breathing episodes and like I have mentioned, there have been plenty of them. However, not once has there been anything else attached to the breathing. No signs of seizures. No blue lips or discolored skin. Her temperament is always her normal laid back baby way and it doesn't seem to matter what she is doing, or not doing, when her breathing changes.It seems like she is just catching her breath from a long run and then once she has all is well.

I cant help but think that this is it, or the beginning of it.

 Isn't this amazing. This is my baby's heart. Her inner workings. Her life line. Its beautiful.
So anyway, I peaked at the XRAY. I couldn't save the pictures to my files so I did the next best thing, I took a picture of the picture and I've posted them above. In November of last year I posted a chest XRAY that was done during one of Vada's many inpatient stays at OSF, see here for that picture-it is all I have to compare this recent one to. Clearly, her heart is larger. I am no doctor, obviously.  I claim to only know what I have been told from specialists and what I have read myself. I don't claim to know a single thing about the pictures that I am sharing and until Friday I wont know anything more. These are just my thoughts and some more of my fears.

For those of you who are unfamiliar with Vada's heart condition she has ASD and VSD also known as or refereed to as Complete Endocardial Cushion Defect. She also has a leaking valve and an narrowing artery.

You know how at times you don't want to talk about a certain subject for fear of some how changing the out come? Well, I am hoping that from venting my fears once again, that I will have made myself look like a fool come this Friday. I know realistically however, its all in God's hands and I trust him.

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