Here we go again.....

So Makily had her appointment with the cardiologist on Monday. I was totally fine about going until I started getting ready to go and then I felt the "panic" setting in again. I cried on and off all the way there. Anxiety sucks.

So we get there and the nurse weighs Makily, does an EKG, takes her blood pressure etc etc. Makily was pretty upset because it took several tries to get her blood pressure, they started out with the cuff on her arm. She has never had it done this way so she was crying and fighting. It also made her arm turn different shades of blue. During the third try her arm was REALLY purple and she was SCREECHING so mid-way through I ripped the cuff off and said "sorry, can we PLEASE do her leg?" She got it the first try on her leg. Her little arm still has tiny bruises on it.

Then the "resident" came in. I like the medical community as a whole in Orlando but I have to admit I am still kind of irked by residents learning on my kid (thanks again Shands). She was terribly nice but this didnt help the fact that Makily was already grumpy. She did all the normal "heart doc" stuff and then we talked about Makily's history. She asked if Makily had a cleft and I said "she did but it was repaired at 18 months of age". She went to leave and then said "oops I forgot to check her mouth". They have never done that at the cardiologist's office but I didn't think too much of it at first. She tried to get a very grumpy Makily to open her mouth, Makily fought and cried....and I just kept thinking "why are we doing this part?" Eventually she gets Makily's mouth open and then she says "Oh yes, the surgeon repaired her cleft very nicely...looks good".
In the end I realize that the prying open of Makily's mouth was just to see a repaired cleft palate.....very annoying.

So the cardiologist came in and was VERY sweet. She ordered the echo and we had it done right there. It took 45 minutes and I laid on the table with Makily the whole time. She did very good and was actually happy at this point. We got her to fall asleep and the tech got some really good pictures.
I knew they were going to want to go ahead and repair the ASD's this time because she is so stable and her weight is so good. It was when the doctor came in and actually said it that I got sick to my stomach.
I could never have imagined that I would have a child that needed anything done to her heart. Although it's been three years, it's times like this that I say "is this really my life?" I don't think that way as often as I used to but truth be told, five years ago I never could have imagined I would be living this life.

On the way home I kept catching myself staring at her in the backseat of the truck. She watching Nemo, kicking her feet, cooing and laughing. The tears just kept filling my eyes. She is so happy, something as simple as a movie she has seen eight million times brings her so much joy. She has the most beautiful smile. I kept thinking "how could I go on if anything ever happened to her.....how could I NOT live this life....how could I get up every morning and live like a "normal" person again". I VIVIDLY remember when Makily was born how I LONGED to go back to being a "normal" person and living a "normal" life. Now three years later Makily has changed me and I know I wouldnt be able to live a "normal" life ever again. Of course I have all the "what if's" flying through my brain. I tried to tell myself the other day that I was being dramatic, this isnt a big deal....but then I thought about it and well it is. They are messing with my child's heart...and essentially her lungs because she is going to have to be intubated AGAIN for this. Maybe I was trying to convince myself that I shouldnt be worried....but I am.