I wrote the following on a messageboard I belong to called Mommysavers. I didn't mean for it to be so emotional, but it ended up that way anyhow. After I read over it, I realized it says exactly how I felt. Here is what I wrote:
The time has come for Tommy's first heart catheterization on Monday and I am nervous. I know this is a routine procedure, but I am worried the trach will complicate things. I am also worried about the outcome itself. His sats (amount of oxygen in his blood) have been dropping slowly as expected, and he looks more blue every day. He also gets tired faster. He used to be go, go, go with his therapists and now he spends a lot more time resting.
This cath is going to tell us how long we have (or don't have) until open heart surgery. To be honest, the first time he went through this, it was nowhere near as scary. He was a preemie newborn, and I was in shock he was even here, much less going through surgery. When he has his cath Monday, it will be 8 months to the day since his last surgery. I have had 8 long months to get to know him, bond with him, love him, watch him meet difficult milestones. I know in my head that surgery is coming. I knew before he was born we would go through this 3 times before he is "repaired". But now that the time is drawing near, I just want to wish it all away. I don't know if I can stand the look in his eyes when he comes out of the sedatives after surgery and he wants to know in own tiny way, why he has to go through this!
I get so disgusted with the universe. Tommy was a planned, wanted, and anticipated pregnancy! I took care of myself before and after I found out I was pregnant. I know, the doctors all say it's not my fault, that 1 in every 100 babies will have a heart defect. So why my baby? Why did I have to join the club against my will? I keep getting knots in my stomach knowing surgery is coming, and yet knowing it's the only thing that will make him well. And it all starts on Monday....
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Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
2 comments:
This post breaks my heart. I wish I had some wisdom for you, but I still struggle with my anger too...
Know that you are giving Tommy the best gift anyone could ever have...true, unmitigated, unconditional love. It is that very love that makes this so hard, but that same love that will last a lifetime.
You, you are loved too.
It is had to have surgery hanging over your head. I have been there done that several times. It never gets any easier because as you get to know your child more you want them to continue to stay with you even more. It will be the hardest thing you ever have to do to hand him over for surgery, but you also know that this surgery is his only hope for a decent life. Hang in there and cherish every moment.
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