The Sunday after Kit’s diagnosis, I knew I’d gone out around other people too soon when I found myself wondering if the black dress I wore to church that day would be the one I wore to her funeral.
Being pregnant with a baby diagnosed with a life-threatening medical condition is an odd purgatory of a position—moms who have had miscarriages come up to give me their miscarriage comfort though she’s currently kicking hard in my womb, and moms of babies who turned out just fine but spent so and so much time in the NICU come up too to try to understand. I know they all mean well and I really truly do appreciate the prayers and sympathy, but I know I don’t really fit anywhere except with other “heart-moms” right now, and it is hard to talk about in person.
I have lost, but not totally—just lost the idea that any of this is going to be easy, that welcoming Kit into our lives will be a seamless transition like it has, for the most part, been with the other girls. Here I thought the roughest adjustment I’d have to make was if we had a boy! Instead I find myself oscillating between planning a funeral and decorating a nursery (heart themed, of course).
The week that has followed Kit’s diagnosis has been one of learning too much at once and crying. I ache when I think about handing over my newborn baby for doctors to cut open for surgery. Knowing I won’t get to hold her and feed her like my other girls, that she won’t come home in a day or two when I’m up and around, like my other girls. Before the diagnosis, so much of getting ready for labor and delivery is all about The Mom–birth plan, preferences, ideas of how things should go. I can tell you that gets pretty quickly tossed aside when you are worried if your baby is going to live or die. I have a space in the notebook–the enormous full of too much information notebook that I got from the hospital–where I can write my birth plan. My birth plan: Keep Kit Alive.
I’ve found some support groups—they are small, since Kit’s condition is rare. 1 in 100 have a CHD, 1 in 2000 have Tetralogy of Fallot, 1 in 7,700 have TOF with Pulmonary Atresia. God chose very specifically to give her to us—maybe coming into a loving family with my four “little mamas” to help take care of her is exactly what God knew she needed. Maybe God prepared us to face this sorrow in many ways that we did not realize and will not realize until the time is here.
I have trouble sleeping—waking up with my heart pounding, a stream of worry and restless thoughts. What if she’s inoperable, if she catches infection, if she has a heart-attack suddenly and unexpectedly. What if the most comfortable and pain-free she ever is in her life is while still in the womb. Everything about her condition is complicated and we can’t know what to expect, at least not yet. As much as I dread the next appointment, preparing myself for more bad news, more boxes of tissue set in my lap, I also long to know more, to steel myself against the impending storm.
My next appointment is right before Valentine’s Day. Bryan will come with me, and we will have a heart echo for baby Kit, an ultrasound, and meetings with the high risk OB/GYNs. I have a list of questions but at the top of them, I plan to ask the ultrasound tech to let me see Kit’s face. Not to look for anything wrong, anything that needs fixing or indicates more problems—just because I want to see my baby girls’ perfect little face.