#45: A Heart of Gold (regardless of defect)

A literal weight being removed from my body--that is the genuine feeling I had when Genevieve's pediatric cardiologist told us that Genevieve's VSD heart murmur has continued to tighten and is trending to close entirely on its own. While I do not let myself perseverate on the worst-care-scenario-what-if's related to her congenital heart defect, I feel great relief hearing that Genevieve's ticker is continuing to develop as well as she has. 

I can still remember the extreme dread I felt when a doctor checked Genevieve at our lactation consultation ten days postpartum and told us she noticed a "significant murmur." At our two-week checkup, our doctor confirmed the murmur and referred us to cardiology. Two decisions kept me sane during that time. The first was holding the news and not sharing it broadly. All of this was difficult for us to digest, and we knew we needed to learn more for ourselves and not let this dominate our fourth trimester. While we are sure our loved ones would have brought good intentions, their own fears, anxieties, and research would have only brought negativity and attention to the topic, and we chose to safeguard ourselves. Second, we did not research or become experts on her condition once we learned the more concerning murmur was a VSD. We instead relied on the direct feedback of Genvieve's doctors and her specific case. I am still so grateful for Genevieve's cardiologist, Doctor Banker of Baylor Scott and White, who did not lead with fear or worst-case scenarios, but rather gave us hope and realistic expectations at each appointment. He was thorough, communicative, and caring. We knew the scary signs we needed to look for, took extra care in keeping Genevieve safe from the risk of illnesses, and enjoyed each day without focusing on something being "wrong" with a vital organ. 

At every cardiology appointment, they ask a few general questions to gauge how everything has been going since the last appointment (which was when Genevieve was 7 months old). A few of the questions are: "Does your baby get tired quickly when playing?" "Does your baby struggle while eating?" "Has their lips turned blue?" "Do you notice difficulty breathing?" The only difficulty in breathing came from myself listening to these questions (though I also feel a deep appreciation that my answer is no to the aforementioned quiz). Hearing these questions is a somber reminder that our experience could be so different if Genevieve's murmur was a bit bigger, was a little lower, or if her rate of growth was more stagnant (thank goodness she has always been a voracious eater). I mention this, because it reminds me the peace, I established from not over-thinking Genevieve's diagnosis. Instead, I focused on the fact that we have the HAPPIEST baby, who is social, hilarious, a great sleeper, incredibly active, and just all-around amazing. Yes, having a VSD could theoretically come with open heart surgery, activity restrictions, or heart failure medications--but for us it did not. In an ideal world, G's heart would have nothing obstructed, but that isn't our reality, so instead we focus on the fact that she was continuing to develop beautifully (this is literally the adjective every doctor has used to describe her growth pattern). 

Normally, a VSD would require an annual checkup now that G is over twelve months old; however, since Genevieve's murmur is trending to close on its own, we have a green light to schedule our next appointment two years from now. Doctor Banker said if the VSD closes entirely (something he believe is possible at the next scan when Genevieve is around three-and-a-half-years old) then we would no longer need to monitor Genevieve's heart. Typing the previous statement brings tears to my eyes, of relief and joy. 

Prior to becoming pregnant, I have always been someone that holds onto that worst case scenario. Historically, I felt safer if I "knew" what was going to happen by running the scenarios in my mind and playing out my responses. I am proud to say I did a lot of self-work around this tendency. All I could see was my beautiful, adorable baby with no indicative signs of heart failure. I chose to keep seeing that. I journaled my fears, I gave myself space to feel my emotions, cry, disassociate before processing, or sleep--usually leading up to or just after appointments. I asked her doctors questions to understand, chose not to bring up her VSD in conversation very often, and would vent and listen to Andrew. You may read this paragraph and say "well, yeah... you just said your kid has been fine, not shown symptoms and the hole will close on its own... why are you overreacting?" But while we were going through it--I did not know that. I did not know if Genevieve would go into heart failure while sleeping as a newborn. I did not know if we would need to schedule open heart surgery. The very idea that my daughter may never learn the joy of sprinting due to activity restriction broke my heart. So yes, I know now that I didn't need to worry or hold that worst case scenario shit at the forefront of my postpartum experience--and while my mind occasionally went there--I made deliberate choices not to live there, and I am so grateful for that.   

When you see the picture below, you see Genevieve looking with a grin at a distraction. But it makes me remember her appointment the week of my birthday last year, when she had her third scan and I just wished that I could take it all away from her, that the only birthday wish I had was for her not to need to experience this and for her to be okay. When I look at this picture, I think about how difficult this scan at fourteen months was today because she did not want to be held down--how we played Baby Shark, showed her pictures of herself, played with toys, had her gurgle water, and how tired she was of being touched, poked, and prodded. But mostly when I look at this picture, I just see this incredible little person whose heart is absolutely perfect--regardless of any 'defect.' If you're reading this, I hope if you are facing something scary and out of your control (just remember everything truly is out of our hands) that you carry hope at the helm and stow away pessimism and anxiety because they do nothing but steal joy from your reality. 

 Distracting Genevieve during her ECHO at 14 months old