Happy (belated) Congenital Heart Awareness Day! I apologize for the late post. I experienced a bit of writer’s block yesterday and to be honest, it was a long day for Regan and me. We had a big snowstorm come through which closed our Cardiologist’s office on Thursday, our scheduled appointment day. She graciously agreed to squeeze us in on Friday and asked to come in the morning to be seen. Our wonderful doctor was very short staffed due to the weather and road conditions and so we waited almost 3 hours to be seen. Frankly, Regan handled it better than me (probably going to be the story of our lives). From the Cardiologist we went straight to the hospital to get her bloodwork done, so we were out venturing for most of the day which left me hangry and Regan over-tired by the time we got home.
In honor of Congenital Heart Awareness, I’ll run through the things we know about Regan’s heart…
First, her heart condition is what’s known as a complete AV canal defect. AV stands for atrioventricular, which basically means the hole in her heart runs through both the upper (atria) and lower (ventricles) parts of her heart. Because of the size of the hole, we knew prenatally that the hole would not close on its own and would require surgery. [In some babies, the hole heart is minor and closes on its own] I’ve mentioned this before, but I could not feel more grateful that we knew of Regan’s heart condition prenatally. More than anything, it has prepared MY heart for what we’ve faced and will face come surgery day. Back to heart facts – the large hole in the center of her heart causes the oxygen-rich blood to mix with oxygen-poor blood and that blood is then not properly routed to each station of circulation. The inefficiency of her heart causes more blood flow to the lungs, which is why her labored breathing is the most noticeable of her symptoms. The defect essentially causes the heart to work overtime and enlarges her heart. Remember that the heart functions as a muscle, so it makes sense that a harder working “muscle” enlarges over time as it pumps harder.
Other than her breathing, Regan’s heart condition makes her fatigue and tire out much more easily than a typical baby. She usually does not eat more than about half of her bottle and we are so happy that her feeding tube allows her to get the nutrition she needs until her surgery. We were fully anticipating a feeding tube based on what they told us prenatally.
The surgery will patch up the wall in the center of her heart to divide the two chambers and create two functioning valves instead of one main valve that she has now.
While she was in the NICU, Regan had episodes of SVT (supraventricular tachycardia). In short, it’s a misfiring of her heart where the natural electrical pathways get out of rhythm and the heart rate increases drastically. Oddly, this condition is not related to Regan’s heart defect and is not uncommon in babies, who normally outgrow it by one year. Until then, she is on a medicine call digoxin that slows the pacemaker cells to keep her SVT episodes at bay.
To use our Cardiologists words directly, “Regan is thriving. Her heart is handling everything very well.” Her heart has shrunk in size since and we have started to reach a leveling out of her medications. She is still eating regularly and what she doesn’t take by bottle she still gets via feeding tube. She is the most content baby, rarely fussy and an awesome sleeper.
Regan has already made my heart a softer, more forgiving and compassionate one, and I thank her for that every day.
I hope that sheds some light on Regan’s precious little heart! Have a fabulous weekend, y’all <3
