This is so very hard. The heaviness and reality of the situation is really weighing on us tonight. Earlier this evening, Dr. del Nido himself called us to review his surgical plan. I won’t go into the details of that whole conversation, but it’s mostly good. He still feels that Savannah is a strong candidate for a bivent repair, but so much of this will come down to game time decisions in the operating room.
In preparation for the surgery, we had to give Savannah a bath. The bath involved washing with chlorhexidine, which was extremely traumatic. She screamed through almost the whole bath. Then after we got her dressed, she still screamed. At that point, all she wanted was her Daddy. I laid down on the bed and laid her sweet head on my chest, wrapping my arms around her. Within about a minute, she peacefully fell asleep.
As I held her, all I could do was cry. Cry for the pain and stress that she’s about to endure. Well in reality, she’s going to be so drugged that she won’t feel much of anything. Lori and I will be the ones experiencing most of the pain and stress I think. I’d imagine Savannah will mostly be scared and frustrated, because she won’t know where she’s at, what’s going on and why she feels this way.
On some level, there’s a feeling of responsibility for my child’s “birth defects.” It’s as if in some way it’s my fault she was born this way. After all, I did play a role in conceiving her. But all in all, no one knows why babies are born with heterotaxy. It’s not like Lori or I did something wrong! There’s just that unavoidable parental responsibility that weighs on my conscience – rationally or irrationally.
Then there’s the voice that constantly asks, “What if?” What if something bad happens? What if they can’t do the bivent? What if she has a stroke and has brain damage? What if she doesn’t make it? What if this is the last time I get to hold my precious little girl? I think these are valid fears, concerns, or questions – whatever you want to label them. Frankly, it’s okay to be scared! Being scared or afraid are sincere and real human emotions. I think it all comes down to how we deal with them.
Regardless of the outcome, I know that I did my best. I advocated for her in the best way that I knew how. I took her to the best doctors, and I traveled hundreds of miles to get her to the best hospitals. And with that assurance, I can take solace in the fact that I did everything humanly possible. The rest is up to God. He created Savannah, not me. It’s His plan, not mine.