Heart to Heart: Emmy's Diagnosis

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If there's one thing that will cause any parent a bit of anxiety it’s when a doctor listens to your teeny tiny baby’s heartbeat and detects something out of the norm. At Emmy’s one month check up her doctor detected a pretty loud murmur, and since murmurs are fairly common in baby girls, we weren’t all that concerned. We were just told to keep an eye on her weight since low weight gain can be a red flag when paired with a murmur, and to schedule a “better safe than sorry” appointment with a cardiologist. 

Fast forward to her two month appointment that we had a couple of days ago, and the murmur had gotten even louder. On top of that, our little gal had dropped to the second percentile in weight ... not exactly the news you want to hear as a first time (breastfeeding) mama. 

The first thing we wanted to rule out was whether the lack of weight gain was from her not getting enough calories, or if it was a bigger issue with her heart. This is where the baby scale I had ordered a month prior came in handy! Seriously, if you’re a breastfeeding mama, this thing has lifted such a weight (no pun intended 😉) off my shoulders when I’m worried about how much milk Em is actually getting. We weighed her before and after each time she nursed for the next 12 hours (me secretly hoping it was a milk issue vs her heart), but nope. She’s getting a little over 3oz every 2 hours which is exactly what her doctor wanted to see. 

The other red flag he told us to look out for was heavy / shallow / or labored breathing since some heart problems can cause issues in the lungs; which rang loud and clear in my head when we woke up to our baby girl’s belly rising and falling rapidly yesterday morning. I decided to nurse her, sit her up on my knees, and see if there were any changes, and a couple of hours later we found ourselves back in the doctors office per her pediatrician's request. 

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They did a full check up again like they had the day before, and ruled that nothing was going on with her breathing. Her lungs sounded good, her coloring was the same as it always is, and the sensor they clipped to her hand to measure the oxygen levels in her blood were reading at 99%. Even after that, our doctor made a call to the cardiologist he referred us to, and got our appointment for the end of this month moved up to as soon as possible. Whether he was trying to spare us from the obvious anxiety we were experiencing, or if he was just truly that concerned about Em, I was so thankful that we were about to get some answers as to what is going on with our girl! I honestly think the random breathing episode that morning was a blessing in disguise to get us in to get her heart checked out sooner rather than later. 

Can I just take a minute and process how crazy the last 48 hours have been? We went from being concerned that Em wasn't getting enough milk with a non-threatening murmur to finding ourselves sitting in the waiting room of a cardiologist's office. My biggest fear ever since we found out I was pregnant with Emmy has been something being medically wrong ... it ruled over me my entire pregnancy, and that worry only intensified once she was in our arms. This tiny little human literally depends on me and Sean to keep her safe, healthy, and loved, and the unknown of the things that could happen that are completely out of our control? That's enough to make us both lose a little sleep at night. There's really nothing that compares to the love that I have for my little girl ... 

Ok, back to the story! Once we left the pediatricians office we stopped by our house for a little breather. We got Em changed out of her sleeper, she nursed for a bit, and she ended up falling asleep. She snoozed all the way to the cardiologist's office up until we were taking her out of the car seat to get her set up for an EKG. Y'all, my daughter is a champ. Girlfriend had people poking and prodding, putting cold stethoscopes on her every two seconds, people clipping sensors to her hands and feet all day long, and even still she was smiling and talking away to the nurse who was hooking her up to the wires for the EKG. Let me just say that seeing your helpless ten week old baby hooked up to a bunch of wires, no matter how harmless the test may be, is one of the worst feelings in the world. 

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After the EKG, we met with the cardiologist, talked over some family history, and generally filled him in on what was going on with our girl. He could definitely hear the same murmur that our pediatrician was hearing, and insisted on doing an ultrasound to take a closer look (which may have been the longest 15 minutes of my life). I'm sure he was just being thorough, but man was he taking his sweet time! Checking and rechecking the view of her heart from different areas of her little body, and she was definitely not loving it. We actually ended up turning on a shower sound on Sean's phone to help her settle because it's legitimately the only thing that calms her down no matter what! Seriously ... thank goodness for Spotify because our water bill was totally out of control last month. 😅

After all of that, and the doc calling Emmy feisty based on how she was putting up with the ultrasound 😂, he gave us the best possible news, given the circumstances, that we could have asked for. Our baby girl has a VSD; which is just a fancy acronym for a condition that means she has a hole in her heart. The small ones are fairly common and often missed, and the large ones almost always require surgery, but Em's isn't small, but it isn't big either. It also answered our question as to why she's still so tiny, and not gaining weight as quickly as she should be. Her little heart is basically in overdrive which is burning up a majority of the calories she's taking in. This diagnosis gave us all of the answers to the questions we've been praying to figure out. 

The hole is in one of the membranes of her heart, and the awesome news is that her body is already starting to heal itself! Her doctor could see tissue starting to grow to cover the hole, and at this point we're just playing the waiting game, with many visits to the cardiologist in-between, to see what her body does naturally. That's not to say that there may not need to be some sort of intervention down the road, whether it be with medication to speed up the process, changes to help her gain weight faster, or something else that I'm not even aware of, but for now we're able to breathe a little easier. We walked in not knowing what kind of trial we were going to be facing, and hearing that it's a somewhat common defect that could potentially fully correct itself lifted (almost) all of the worry I've been carrying around with me since we first discovered the murmur. 

So, today I'm soaking up every second of her sleeping in my arms while I type out our story with one hand, holding her a little tighter, and praying hard for God to continue doing what He's doing in healing Emmy's heart as quickly as possible. We love you more than you'll ever know Emerson Grey! Oh, and this is the only scare you're allowed to give us for the rest of your life, ok? 

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Random note of something I don't want to forget ... pregnancy brain apparently ends up turning into mom brain because I swear it's all mush in there these days! Over the last few days I've referred to her pediatric cardiologist's office as a "cardiatric office" to Sean, my mom, and total strangers. When I called her pediatricians office to ask for the phone number to their recommended cardiologist I legitimately said to poor lady on the other line "Hi, I'm calling on behalf of my daughterson Emerson for a cardiatric referral". WHAT IN THE WORLD DOES THAT EVEN MEAN? Bless the receptionist's heart who was on the other line because she never once laughed at how ridiculous I sounded. I mean, to be fair though, the word totally sounds like it exists, right? Pediatric + Cardiologist = Cardiatric


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