I read recently of a mother who took pictures of her daughter’s chest before her first open heart surgery. Azalea’s skin, unblemished, no bruise or cut in sight will have a scar down her chest. She will be sewed or bonded; I am not sure what they will do. I wonder if I should take pictures of her chest as well to show her how she looked like before…
When she is sleeping I feel for her heartbeat. Sometimes I can’t feel it. I think it’s my imagination playing with me. I press harder. Then I make her move. She doesn’t wake up but her arms or feet move from side to side. I think all mothers do this to their babies. I do it because she has a complex heart and I wonder if one day it will stop.
At this time a week from today she will be out of surgery, inshaAllah. She will have the Glenn procedure. Azalea was supposed to have it at the end of November but my stepdaughter came to visit us and she was sick; she gave it to my son who got bronchitis and he gave Azalea a cold. Alhamdullilah.
I told my friends and they felt bummed for me. I wasn’t disappointed. I was grateful. During that time I took a tincture to help my milk flow and it worked. I started exclusively breastfeeding for a month but then she never gained weight so I am supplementing with formula. I finally gave in after reading about another mother in a similar situation who was told that formula was first created for medical purposes and this is definitely a medical purpose.
Now Azalea is almost 6 months old. She is small. People comment and I want to tell them she has a heart defect but then there will be that awkward silence.
When I have a chance I read blogs by other moms of “cardiac babies”. These babies and their acronymed heart defects. So many of them. It overwhelms me. I can’t get it all straight sometimes. My writer’s mind wants to block out how a heart looks and functions. I just know how it feels.
Azalea has a single ventricle heart defect and a grand transposition of the greater arteries. But she looks fine. Anatomy changes and every time we go to the hospital for an echocardiogram I imagine that the technician will bulge out his or her eyes and say, “I can’t believe it! Her heart is normal! It’s a miracle!” That never happens. I don’t get mad at God. I keep on praying for help.
My husband is taking an online biology class. He told me that he was studying birth defects. Her heart didn’t form the way a “normal” heart forms around the time she was 5 weeks in gestation. I think back to that time. What did I do wrong?
Maybe I am just too self-centered. Maybe I am making it all about me. But I wonder if there was something I did or did not do that made her heart complex. I wasn’t ready to be pregnant with her and I was angry about it. I feel guilty about that.
She lies beside me kicking her feet on the floor, smiling and cooing. I love her. When she is on my lap pushing herself up to stand while I hold her hands, I look deep into her eyes. I want to hold that moment forever.