{heart updates}

I still can’t fully wrap my mind around the fact that I am heart mom. That my youngest had two heart surgeries, the first at 2 1/2 weeks old and the second at only 8 weeks old. It’s mind blowing. Two whole months she spent in the hospital fighting to survive. And, here we are, over 2 1/2 years later. 

I’ll admit, I hold my breath every time I take Bernadette to the cardiologist. Even when I see any number popping up on my phone from that general area, my heart skips a beat. I think it all started in the pregnancy. Every time I would pick up the phone, it seemed like whoever was on the other end of the line was delivering more hard news or scheduling another appointment. Which lasted up until this past year. I kept in contact with Berni’s cardiologist on various things throughout the year, but you guys… It has been ONE ENTIRE YEAR since I have had to take Bernadette to the cardiologist! Cue all the happy tears. 

Friday was the day for her annual checkup. I hadn’t given it much thought in the weeks leading up to the appointment because, well… life. And with school out for the summer, my mind has been more preoccupied lately. 

Hubs and I loaded all three girls up early Friday morning and hit the road. Amazingly enough, the traffic was a breeze, such a rarity heading that direction on a weekday morning. But, I was thanking Jesus when we made it to the office 20 minutes early. What a relief! I even had time to run into the store to look for shoes for Bernadette. It was one of those “Oh, I thought you grabbed her shoes” moments between David and I. It happens.

First stop, EKG. I think I was more worried about Bernadette cooperating for the appointments than the actual results. Because, hello. She’s two… and a half might I add. She does not have any interest in sitting still. Oh, and for the EKG if you have never experienced one before, the technician places 14 stickers around your chest and back and on your legs, attaches leads to each sticker and waits until the patient is still to snap the information in half a second. The set up is the longest part while the sitting still part is probably the most challenging for a toddler. Her sisters held her attention while they sang and danced around the tight quarters to aid in keeping her still and from pulling off the stickers. 

After the EKG, we headed upstairs for the echo. The echo lasted about 20 minutes in total. Maybe our shortest one yet! Bernadette did great overall, thank you to the kid’s show playing on the monitor above the technician’s head. Mine and David’s focus was on keeping Bernadette calm which also kept my mind off the fact we were there to check on her heart.

It is so fascinating to watch the monitor as the technician captures images of Bernadette’s heart. It’s wild to watch her heart beat. To see the blood flow. To see it all on the screen, the heart that keeps her body alive and functioning. Technology! 

The next step is getting her height and weight just like any other doctor appointment. Never mind she fell off the scale because her balance is still a bit shaky. She bounced back shortly after but it was enough to scare all of us standing there. Daddy was close enough she wasn’t down for long, but the bang left a huge mark on her face. Ugh. 

The cardiologist met with us shortly after and gave us nothing but good reports about her heart. My own heart was singing praises of relief and thanking God for bringing us here to this exact moment. Looking around, seeing all three of my beautiful babies, knowing the fight we have had to get to even this moment. It was music to my ears to hear how well her heart is doing as she is growing. The repairs look beautiful and the stenosis on the left side hasn’t changed in a whole entire year. Happy tears of joy filled the corner of my eyes. 

We chatted about a couple of other things developmentally. She made a couple of recommendations of a few new specialists to meet with soon, but overall, it was such a positive appointment. So great in fact, she won’t need to be seen for another year. The cardiologist and I will check in via phone throughout the year much like we did this year, but I don’t have to physically take her in unit next June. TEARS!!!!

Her heart is one of those things that is constantly in the back of my mind. Once a heart mom, always a heart mom. Articles I have read in the past have said there really is not a cure for Congenital Heart Conditions. Surgeries and interventions can help keep the heart in a stable condition but at any moment due to the nature of CHD, it can change on a dime. I remember reading that shortly after Bernadette’s heart surges. I actually remember ugly crying my way through it. 

I think because of that, I have had a more pessimistic view of her heart condition overall. Almost as if I am waiting for the other shoe to drop, a hold my breath kind of mentality. It’s something that I constantly battle against. And when I say battle, I really should say ignore. I have such a hard time bringing it before the Lord. When I don’t, I find myself back at the statistics and percentages of those kids who do end up needing intervention or a repeat open heart surgery. And the moment I go there in my mind, it’s a lot harder to bring myself out of it. 

The facts are, yes, Bernadette is a heart kid. Living with a repaired heart. Only time will tell whether or not she does or does not have to have any sort of intervention. God knows, but I sure as heck don’t and neither does the cardiologist for that matter. Each time we see her, she reminds me her heart is looking good and that hopefully she will not need anything further. That is the end goal anyway. 

With all of that knowledge, I can’t live in a place of holding my breath about it. Or waiting for the other shoe to drop. Or reading into things that aren’t really there to begin with. I have to trust God with it. Whether or not she does or does not need intervention down the road, I have to trust that the Almighty God that brought me through the worst experience of my entire life so far the first time and He will do it again if that is in fact where we find ourselves. 

Oh, and that’s not say I will never worry about it. I am human after all. I have to recognize when I am worrying about it and give it over the Lord. Not just ignore the worry like I have so many times before. God’s got her and He’s got me. For now, in this moment, I am praising Him for all of His goodness, all that He has brought us through, and all that HE WILL bring us through. 

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  1. Oh friend I relate to this so much (just replace heart with lung). The journey is never ending even if the traumatic beginning is over. We will never truly rest from caring for our kids as medical mamas, but we can rest in our hearts, truly rest in the Lord, and take it all one day at a time. Love you sweet friend. You push me to keep going.

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