#27: Keeping it Close to the Heart

I like to think that I am an open book, especially if those pages can help or connect with someone on their own journey in some way. That being said: I believe in sharing different components of my own journey and experiences when it feels resonant. I am sharing this detail of our parenting experience not in the thickest of it, but still mid-process. I will start this post by saying there can always be something to worry about. Shoot, even in the absence of something concrete we often find ourselves waiting for that 'something' to reveal itself. 

We learned the Monday after Genevieve's birth that this 'something' for our family was going to be Genevieve's heart. I was at a lactation consultation where we received good feedback on my supply and Genevieve's latch with a shield. Of course the next day I became symptomatic with mastitis but that is something else entirely. In fact, I would take dealing with the worst of mastitis ten times over if I could avoid the additional news we learned that day. 

At the appointment, we had a doctor check in on Genevieve. After listening to her heart, the doctor gave us a concerning look and asked, "are you aware that she has a significant heart murmur?" This was in fact new (and worrisome) news to us.  No earlier checks at the hospital or at her followup appointments revealed this problem; nor had we experienced any symptoms of a problem (thankfully). I left that appointment feeling quite flustered. While I knew murmurs are common in babies, we were still concerned; the modifier "significant" rang in my mind and I had to deliberately choose to not think on it too deeply. 

Several days later at our two-week checkup with Genevieve's primary doctor, he confirmed the murmur as well. He said the murmur was so pronounced he could actually hear it over her breathing. She was developing well in all other aspects, but we left the appointment with a referral to a pediatric cardiologist and a pit in both of our stomachs. Being told to look for signs of heart failure in your newborn and what to do in case those symptoms arise is traumatic, no matter how positive your outlook. Due to staffing issues, the cardiology department tried to schedule us out over a month later. I challenged that timeline adamantly and managed to get them to see us in just a couple weeks instead.  

To date, we have had three cardiology appointments; they were when she was 1 month, 2 months, and 4 months of age. At the first appointment, she got a full ECHO, at the second she got a full ECHO, EKG, blood pressure test, and chest x-ray, and at the most recent she received a limited ECHO, EKG, and blood pressure test. I do not think I could ever appropriately describe how hard it is to watch your tiny newborn in a sterile medical setting, bound by a swaddle that keeps her chest bare while she has probes and an ultrasound reader scanning her chest for nearly an hour. Each time I would be curled up on the bed beside G: stroking her, talking to her, and keeping her occupied. I remember clenching my teeth and shutting my eyes in the first two ECHOs any time they played the loud audio of her heart. Andrew would comment after the appointment on how relaxed I seemed, to which I expressed I was very anxious but my priority was emanating calmness as to aid Genevieve through the processes. Genevieve was always so relaxed and accommodating, but the experiences still tore at my mama heart. I always left those appointments with emotional drain that would catch up with me an hour or so after the appointments. I also cannot imagine attending these appointments without Andrew there. As a note to any mamas who need to see specialists: just because you can go it alone, doesn't mean you should. Lean in to your partner and do it together. 

We learned Genevieve had two heart murmurs. Murmurs are often common and heal themselves and do not cause problems in babies. Genevieve had one described "common murmur" that was not a true murmur but rather was the result of a flap allowing blood to flow where it ought not be. This small patent foramen ovale resolved on its own via our 4-month ECHO. Genevieve's second (and true) murmur was our bigger concern.

The original classification for this second murmur was a small/medium peri membrane VSD. This murmur, we learned via our cardiologist at our second appointment, could result in Genevieve possibly needing activity restriction, heart failure medication, or even heart surgery at six months of age. At each appointment Genevieve's VSD appeared tighter (a good thing) and to show it was healing on its own (though it may never heal entirely). At our four-month check the doctor said he would now classify the murmur as "very small" and due to her age we were beyond the "critical period." That is not to say that Genevieve could not show signs of heart failure or that she's fully in the clear, but it is welcomed and reassuring news. As of now, the murmur is not obstructing any of the structures of her heart; but we will need to continue to monitor her murmur. We can expect continued appointments until she's 5 years old (at least).  

 Why share all of this? The details of her appointments are not the purpose of this post. I share them to give context to the 'something' we personally have been dealing with that we haven't let dominate our time and attention. What I really want to talk about is protecting your peace and preserving joy regardless of worries and concerns (that are inevitable). As someone who tends to be anxious and has perfectionist tendencies, it is easy for me to perseverate on the worst case scenario or what is wrong. That being said: I struggle to battle this orientation internally. This is why I am mindful of who and how I share information. I learned my lesson in pregnancy when some became too obsessed with details about my hypertension in pregnancy and interjected their anxiety onto me (talking about your blood pressure spikes does not actually help them, in case you were wondering). Andrew and I looked at each other in the elevator leaving the cardiology floor and he said "we are not going to talk to everyone about this, right?" To which I nodded with wide eyes. It wasn't until after this most recent appointment that we felt comfortable sharing broadly with friends, family, and to blog any of these details. We may have mentioned to some at a high level that G had a heart murmur, but most waved it away as 'Oh, that is so common, I know ____ who had that..." and we didn't elaborate further. 

I will say that I did confide in a select few with more details (leaning in and venting is important). I was careful to lean in to those who would not lead with fear and sympathy or too many questions. Rather those who would allow me to vent, be somewhat detached, and those who might have a deeper level of empathy (something they can relate to). I needed these people to let some of the steam out, but that wouldn't need to know all the details, check in, or make me think about her heart murmur any more than I needed to. There was nothing we could do for her but allow time to pass, so we needed to surrender in order to free ourselves of anxiety and worry. If she was going into heart failure and turning blue, it wouldn't actually help her if I had thought about it fifty times before. 

Genevieve is an incredibly happy, curious, expressive, and relaxed baby. She sleeps like a dream and rarely cries or seems irritated. I say all of this not to brag, but to give perspective. If I would focus too greatly on the one thing that is wrong, I would not be present and happy about all those moments that have nothing to do with her underlying heart condition. I was mindful to say, "I will not let this steal my joy." I would allow the thought to be but not judge it. Almost like the clouds in the sky, I noticed, acknowledged, and then grounded myself with what was actually happening in that moment. I chose not to google more information (I did not see value in becoming a VSD expert), avoided talking about it too often, or to think about the what ifs. I held in my mind the warning signs I needed to be aware of, I slept in her room in my reclining glider to be close by (since SIDS is often linked to an underlying and often undiagnosed heart problem), and I operated most of the time from the present moment--which had nothing to do with this background diagnosis. 

I think as people, we can fall victim to excusing our worst impulses. It takes conscious effort to rise above and work through those things. I want Genevieve to push beyond and challenge her worst impulses, and I am committed to doing that too. Children do as we do, not as we say. Integrity is everything, and I therefore want to model not letting pessimism or anxiety rule. If I would have allowed myself to worry, so many moments would have been missed. Instead of filling up during her naps on self-care or productive tasks: I would have felt terrible and worried. Instead of reading, singing, and playing with G: I would have felt terrible and worried. Instead of sleeping well when she did I would have (you guessed it) felt terrible and worried. Our reality is only our perception, and while we cannot control circumstances or events we absolutely control how we experience them. 

Our perception is a choice. Of course we all operate from different levels. But practice and conscious effort coupled with strategies can help us improve. When I first started deadlifting I wasn't able to do 305 lbs, but with practice and by challenging myself, that became my PR. There is always room for improvement, not because we aren't enough but because that is being human. I am grateful Genevieve's murmur is trending in the right direction AND this experience was merely a catalyst for the self work I needed to do. This experience enabled me to practice choosing joy over stress, fear, and anxiety. This then will better help me when a new stressor presents itself and will model to Genevieve the inherent power she holds in creating her own reality through conscious perception. 

Photo taken at Genevieve's third cardiology appointment after her EKG