Regarding Fergus

CW: Pet death, infant death, grief, PTSD

Yesterday nearly broke me. My beautiful, ginormous orange fluffball cat Fergus/aka “Bob”/aka the Big Orange Booger/aka the Patriarchy died suddenly and unexpectedly. Fergus was born almost exactly 6 years ago as a barn cat to some friends of ours.

He was the only ginger in the litter and I begged my spouse for another kitty because we were already at our limit of two. My hubby agreed, and we watched on FB as our kitten grew and became socialized and, in August 2016, while I was away at a congenital heart conference, Phil & Mira collected Fergus and brought him home, his jaunty clipped ear the only sign he had ever been a barn cat.

Hard to believe now, but Fergus was a tiny boy, fitting entirely into the palm of our hands when we first got him. Never in our wildest dreams did we anticipate what a behemoth he would turn out to be.

I’m helping!

When we moved from MI to NY, he disappeared on us in the new house. Four adults and two children searched everywhere in an essentially empty house for over an hour. We all assumed he must have wandered out the front door when it had been left open for a period of time. When we located him the next day, he came sauntering out of the laundry room, presumably having squeezed himself back behind the appliances. He never did set foot back into that room again (not that I blame him). Only last year, when we needed to clean the dryer vents, did we find the desiccated remains of the piece of pizza he had stolen and taken back there to eat in private. He was something else.

Give me the water, you plebe!

On occasion, you might be petting his fluffy self and find a weird wet spot. Often it was on the top of his head, but not always. This weirdness was finally explained when we discovered he loved hanging out under the faucet in the bath and sauntering around a freshly used shower. He hated water most of the time, but these were happy moments for him, and I feel sure he loved knowing we were going to be happily petting him until we hit a wet spot and just left wondering if we needed to go wash our hands.

He also loved to be where the action was. Oh, you’re working? Let me help by fwooping my 20lb body across your keyboard, or sticking my fluffy tail between you and the screen you are trying to see. He was a boy who loved to try and take (often successfully) the pages as they came out of the printer.

Fergus, King of the Printer

Fergus was curious and had no boundaries. You had to feed him first, or he would try to eat the dog’s food while you got his ready for him. He would insinuate himself onto your lap or into the crevice next to you and then spread out as much as he could in the hope that you would move. He would purr loudly, merp three octaves higher than you would expect, and grab your hand with his paws if you were not giving him the petting to which he believed he was entitled that very moment. If he stretched out to full length from the floor, he would likely be able to touch your shoulder if you were sitting. He was big, sweet, and dumb as a bag of hammers.

Yesterday, we headed out early for a long drive to get a medical evaluation for Mira. My sister has been visiting to help the household run since I just had spinal surgery. She called to let us know that Fergus’s back legs were not working well and he was not interested in food or water. She said she would keep an eye on him. I Googled the symptoms and determined that it was most likely a blood clot and that he was not coming back from this because even cats that survive the first clot often throw a second, so euthanasia was the kindest solution. Since he was not exhibiting any signs of pain, we decided to just let things be until we could get home. On our drive back several hours later, I called the vet and was able to get an appointment for 3:20 pm. We arrive home around 1:00 and found our buddy lying on the floor, kind of purring to himself in a self-soothing way. I couldn’t stand it. We wrapped him up in a blanket, and I had my sister hand him to me while I sat in the recliner.

Friends, when I tell you we were not prepared for the next few moments, I cannot emphasize it enough. Suddenly, I was back in September 2014, holding our 10-month-old son wrapped in a blanket at he breathed his last breaths. Patrick in a soft green blanket, Fergus is a soft blue, both breathing shallowly and difficultly. In that moment, I knew Fergus would not make it until his 3:20 appointment, so I talked softly to him and told him how much we loved him and would miss him, and asked him to go meet Patrick and play together until it was our turn to arrive. When Phil came in, leaned forward, and whispered in my ear that he was about to break, I knew the moment had caught him unawares in exactly the same way that it had caught me. We were watching our baby boy die all over again.

And what was worse? This time, Mira, now 11, totally gets the loss and finality of death in a way she did not at the age of 3 when Patrick passed. It was an excruciatingly beautiful and sad moment when she came and sat with me after Fergus had breathed his last breath and she began to pet his head. We all cried, but we also talked about what a little shit he could be and laughed at the antics that had brought us so much joy over the last six years.

When it came time, we took him to the vet and made plans for his cremation. I also elected to get a mold of his paw print. And then the vet dropped the bomb I had not been anticipating. “I’m so sorry,” he said. “When we heard the heart murmur last year and did the blood test, it showed that he didn’t have any risk at that time. Unfortunately, this is a classic case of what happens with cats who have a heart murmur—they throw blood clots and it lands at the saddle juncture…” When I tell you that my heart stopped, I am being literal. I have heart palpitations that I take medications for. And when the vet said “heart murmur,” my heart skipped a beat. Because I had forgotten. In that moment, I was taken back to last summer when we first received word that Fergus had a heart murmur and all of the anger and frustration I had felt. Why?! Was having two kids with congenital heart defects not enough? Did my cat have to have one, too? I was so mad. But then the blood test came back fine. And we had so many other fights to fight, and Fergus was fine. So I forgot. Completely. Nothing I had read on Google had triggered that moment from last summer.

Friends

Now here I was. Already suffering PTSD and back in the moment of my son’s death, grief at the loss of him and Fergus swirling together, ready to take me under, and the vet had just told me, essentially, that my cat had died from complications of a heart defect. I’ve had some time to think and sleep on this, and I still don’t know what to do with this information.

And yet, part of me knows that’s a lie. Part of me knows that it was my experience with Patrick that informed my actions with Fergus. I held him and made him feel comfortable and loved, and reminded him he was not alone in the last moments of his life. Moments that were quiet and peaceful, instead of being spent in a car rushing down the highway in an effort to get to an emergency vet that would charge me $1000 just to tell me there is nothing they can do but keep him comfortable.

Six years is not long enough with a cat. Ten months is not long enough with a son. Loss sucks. Grief sucks. Seeing the downward spiral coming for you and not being able to get out of the way sucks. It’s terrifying. The fear washes over me. How long, this time? How long until I can begin to dig my way out again? How long will the dig take? What if something ELSE happens in the meantime? Why us? Why now? Haven’t we been through ENOUGH? God dammit! I am already physically broken and trying to heal. How do I do this?

Logo is a registered trademark of Mended Hearts

There are no answers to my questions. But then I remember that tomorrow is Pentecost. The color is red. Red like a heart. Red like good, oxygenated blood. Red like the symbols for CHD. And it’s seen as the beginning of the church’s mission to the world. It’s a reminder of my mission. To share, honestly, with others about where I have been and where I am; about my struggles. To educate and give others space to feel, process, and share their own stories if they feel so moved.

It’s also a reminder that God can and does give us more than we as individuals can handle. But I am not alone. My sister is here. My spouse is here, and we are both supported and loved by the congregation he serves. My friends and family can reach out by phone or social media. I am here for Mira and Phil. Our other fur babies are here, cuddling up to us and giving us comfort. This moment sucks. It hurts. It’s awful in ways I simply never anticipated. But I am wrapped up in and held up by the love of others. Just as I held Patrick, Fergus, and Mira in moments they needed comfort, love, and care, so too do others now do the same for me. We are a community. It’s the only way this works. Thank you for being part of mine.

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.