Heart Month Day 7: Echo/EKG/X-ray

So, any heart parent gets pretty familiar with these tests. Every time Mira has a cardiologist appointment, she gets an echo and an EKG. Fortunately, medicine has come a long way and they work very hard not to x-ray her unless it's really necessary because they know that the very nature of her condition will expose her to more radiation long-term.

As far as echos (echocardiograms), Mira hates them. She would rather have a shot than an echo. She particularly hates the parts where they press hard--under the rib cage and up around your collarbone and neck. Having had several myself, I can't say I blame her. They are uncomfortable, you feel exposed, and then you have to wipe off all the goop. I am loathed to tell her that puberty makes them even less fun.

Patrick never seemed to mind echos. In fact, I don't remember them ever having to sedate him for them. He'd just grin at the tech as they slid the wand across his chest and occasionally try to grab the cord. He was getting attention, and he loved it.

Sleeping post-x-ray

With respect to x-rays, let me tell you a story. It's April 2011. Mira is vomiting a lot and generally not feeling well. We take her to the local hospital where they take an x-ray. She is diagnosed with "a BIG pneumonia" and given antibiotics and sent home. When she doesn't get better, we take her to the city hospital ER, where they do an x-ray, see nothing has improved, give her IV antibiotics, and send her home with stronger ones. No improvement, so we go back to the city hospital ER where Mira is admitted and where she will eventually be diagnosed with RSV. When they take additional x-rays, they notice that there is literally no change in the x-rays. Not better, not worse, images exactly the same. They figure out that the big white cloudy space on her x-ray was not pneumonia, but simply the absence of lung because the left one never grew very large, given that she has no left pulmonary artery.

And this is the story I use to remind myself that medicine is called a *practice* for a reason. They look at symptoms and play the odds. Until doctors learn that your child is plumbed differently, as the saying goes, "when they hear hoofbeats, they think horses, not zebras." Absolutely look for the best doctors and best care for your child, but remember that medicine isn't perfect. Most of the time, they are doing the best they can with the information they have.

Heart Month Day 6: Medications

When you first discover that your child has a CHD and will need surgery, it’s overwhelming. More often than not, you are just trying to get through the waiting, then the surgery, then recovery, and then home. It’s often a shock to discover that surgery has not “fixed” or “cured” your child.

When we brought Mira home from the hospital, she was on 6 medications that required a total of 15 doses per day. We got a dry/erase board and made a chart so we could check off each dose and keep track because certains meds lined up with various other meds at odd intervals and others had to be taken an hour after another. Figuring out how to give a 1-year-old medication that doesn’t come in liquid form was difficult. We had a pill crusher and “sippy fruit” that got us through until Mira was three or four and learned to swallow pills.

Patrick actually came home in fewer meds, although his increased with time, needing aspirin, Lasix, Tylenol, the top tier $60/month stomach med, and a crazy-expensive specialty formula (think $100/ small can, mail-order only) that had to be added to breastmilk to make sure he was getting enough calories.

NG tube

And since there isn’t a better place for this, let’s talk about feeding tubes. Mira had an NG-tube while in the hospital, but we fought like hell to get her home eating by mouth. There was no way I could be responsible for that. With Patrick, there was no choice. He was coming home with an NG-tube and we had to learn how to insert it so we could put it back in when he pulled it out, and to replace it each week. We even had our own stethoscope so we could listen to tune placement and make sure it was in his stomach and not his lungs.

I cannot explain to you the shock and PTSD I experienced the first time I had to give myself a COVID swab and felt it going into that space. I had flashbacks of shoving those godforsaken tubes up Patrick’s nose and it shook me. As scared as I was for him to have surgery to get a G-tube, I almost wish we had done it sooner as life was waaaay easier after that. Plus, we could see his beautiful face, and it was easier to keep him from pulling on the G-tube than one stuck to his face.

NG Tube

Tube-free face!

G Tube

Heart Month Day 5: Hospital

We were blessed in Michigan that there are three great hospitals that all treat CHDs. Our pediatric cardiologist said he would trust the surgeons at any of them with his kids. We ended up at Children’s Hospital of Michigan in Detroit. Both kiddos had the same surgeon and we could not be more pleased with the care both they and we received from the doctors, nurses, and staff. The hospital is full of amazing art and there’s even great stuff outside. We were there over two different Thanksgivings, so I figured I should share the Christmas trees from those stays as well.

These days, Mira is seen at Columbia in NYC. She loves taking a bite out of the Big Apple.

Hospitals can be scary places, especially when your kids are there. Don’t just go by a hospital’s ranking on some list. Look at convenience and how well the people there take care of you and your child.

Heart Month Day 4: Scars

Both of my kiddos have chest scars from their open heart surgeries. They also have several random scars around their rib cages where pleural tubes were placed to remove liquid around the lungs and wires were placed in case they needed to restart the heart. Patrick had a scar on his stomach from his G-tube.

Phil and I have scars on our psyches and hearts. Mira, too. You can’t go through things like this and not be scarred emotionally. And these scars are harder to heal because they don’t get exposed to light and air as often. They get tucked away; shoved down because they can’t be dealt with in the moment. I always intended to bring them back out when there was time. But there was never time.

Scars are tricky things. Visible or not, they mark us permanently. People call us survivors, but that doesn’t seem right. That sounds past-tense when, in fact, it’s ongoing. I am a surviving heart parent. And I do it one day at a time.

Heart Month Day 3: Surgery/Catheterization

Mira had a heart cath in Sept ‘11 to determine the full diagnosis and whether she would need surgery. She had OHS just before she turned 1. She had a second cath in August ‘19.

Patrick had OHS around 7 days old. He had several subsequent caths for various reasons, and his second OHS in June ‘14. He had one or two more caths after that, the last in August ‘14.

Having your kid undergo surgery is never easy. OHS is even scarier. But when you have friends with you for emotional support and an amazing heart surgeon you trust, it gets a little easier with each one.

Heart Month Day 2: Diagnosis

Mira’s heart problem was first discovered when she was 4 mo old and went to the hospital with RSV. The echo tech couldn’t locate her left pulmonary artery (surprise! She didn’t have one). She was dx with absent left pulmonary artery, med ventricular septal defect, and pulmonary arterial hypertension.

Patrick’s heart problem was first discovered when I was 18 weeks pregnant, but they didn’t have an “official” diagnosis until a week after he was born. He had truncus arteriosus with discontinuous pulmonary arteries and a hypoplastic left ventricle. My high-risk OBGYN swore at every monthly sonogram that there was nothing wrong with him and that everyone would see he would be perfectly fine after he was born. Thank God I listened to the pediatric cardiologists instead of her. And yes, eight years on, I am *still* angry about this.

Heart Month Day 1: Date of Birth

My heart kiddos were born in 2010 and 2013.

Nothing in my life prepared me for this journey, but I have made some wonderful friends along the way.