“Our lives get cut into two sections: the time before that moment and the time after that moment.” I’m a heart mama to a heart warrior. This is our story.
A little over a year ago, I remember talking to a friend. I was completely sure our family was due for a disaster. Our life isn’t perfect by any means, but we had two wonderful, healthy daughters and our own home, and I was able to only work very part time. With social media so prevalent in today’s society, it’s hard to go even a day without reading about someone who has suffered one kind of loss or another. Even though we have our bad days like anyone else, I was feeling extremely blessed. I was afraid the proverbial other shoe was about to drop.
Fast forward to May 2017. I started having strong cravings and taking naps (which I never do). Despite having an IUD, I bought an 88 cent pregnancy test to ease my mind. I was extremely surprised when the second line appeared right away. My mind instantly went to the trips we were planning for our girls, and the free time I was supposed to have to market my photography business once our youngest started preschool in August. This wasn’t the plan. Then I got completely freaked out when I looked to Dr. Google (bad idea) about the fact that I had an IUD. The doctor said he couldn’t remove it without terminating the pregnancy, but that it wouldn’t be an issue. Then we got to hear that first sweet heartbeat of our baby that was due at Christmas.
At around 13 weeks, I had the blood test to check for trisomies and to tell us the gender. A week later, we got the news that he would be our first boy, and that everything looked good! We spent the next few weeks anxiously awaiting those first kicks, watching my belly grow, and planning a Harry Potter themed nursery.
Becoming a Heart Mama
On August 16, we went to our anatomy scan like seasoned professionals. We already knew with 99% accuracy that he was a boy, and the blood test was clear. So to us, it was an extra peek at our little guy. My husband had to work and my grandma was visiting, so I brought her and our two daughters along so they could see him. We got to see his sweet little face, ten fingers, ten toes, etc. I even asked if he had all four chambers in his heart. At that point, that was the only thing I really knew to look for. Then she left to get the doctor.
When the doctor came in and said it might be best if my grandma take the girls to the waiting room, I knew that shoe was about to drop. She told me that it looked like our son had truncus arteriosis, and could potentially have a chromosomal deletion as well. Essentially, instead of having separate pulmonary arteries and an aorta that go to separate ventricles, he had one large artery (truncus) with the pulmonary arteries branching off from it. We would have to deliver four hours away so that he could have life-saving heart surgery.
That’s the moment I became a heart mama. They made us appointments for that afternoon with a genetic counselor and a pediatric cardiologist. My husband left work after I called him. I was sobbing uncontrollably, not quite yet understanding everything I had been told. We went to our appointments and went over our options. We opted for an amniocentesis so that we could be as prepared as possible. After an excruciatingly long three days, we got the results that his chromosomes were “normal,” and we were just dealing withe the congenital heart defect. Never in my life did I think that hearing those words would actually be a relief.
The new plan
In October, my husband and I ventured to Charleston to meet the team of doctors who would save our son’s life. It was extremely overwhelming. We sat in a room with half a dozen professionals who explained his condition in more detail, as well as their plan for delivery, surgery, and recovery. Induction on Christmas night. Open heart surgery on our newborn within the first week. Four to six weeks of recovery. At least two more surgeries as he grows. A lifetime of cardiology appointments.
We came home to research places to stay and to figure out a plan for our girls. Doctor appointments increased and now included fetal echos. We had an amazing baby shower, and finished his nursery. “The boy who lived,” had infinitely more meaning now. We tried to keep things as normal as possible, and enjoyed our last Christmas as a family of four, with as many festivities as we could fit in.
Christmas morning came with the typical joy and magic that it brings. It also came with the added stress of packing for five for an unknown amount of time, making our final preparations to head to Charleston, and the anxiety of being about to give birth to a heart warrior. But we loaded up our minivan and headed across the state to check into the Ronald McDonald house (aka the most amazing place ever). We enjoyed Christmas dinner together, put the girls to bed, and left them with my mom. Then my husband and I headed for induction.
Marvin Douglas – The Boy Who Lived
After a long night and a crazy labor, we got to meet Marvin (Vin) Douglas at 11:40 am on the December 26th. He came into our world at 20 inches long, weighing 7lbs 7oz, and immediately held my finger. Then they whisked him away to the stabilization unit and the moment was over. They brought him for another quick peek once he was cleaned up and on his way to the PCICU (pediatric cardiology intensive care unit).
Over the next few days, they watched his vitals to figure out the best time for his surgery. We got to give him tiny bottles of breast milk to coat his gut and to give him some eating practice. For a baby with a broken heart, he did amazingly well. He breathed room air, loved his bottles, and you almost couldn’t tell anything was wrong with him. There was a constant barrage of labs, echocardiograms, and x-rays to watch for fluid in his lungs. They gave us a tentative date of January 3 for surgery, but it got pushed to the 5th because it was needed by a more critical baby.
There was also a freak blizzard that shut down the island for two days. The nurses were stuck at the hospital on an emergency schedule, swapping 12 hour shifts. We walked back and forth between the hospital and the Ronald McDonald house in the snow, took our daughters to the atrium play area, and sat with our boy as much as we could.
In our minds, we knew that waiting was a good thing. It meant his surgeon thought our little warrior was strong enough and his heart would be fine for 48 more hours. But when you’re a parent of a sick child, watching their vitals start to waver and watching them struggle, those 48 hours can seem like forever. Looking back, it feels like everything went so quickly. Compared to so many others, it did. But at the time, it felt like we spent a lifetime in that hospital.
The hardest moment
The morning of surgery, I went to the hospital at 4am. The nurse carefully handed Vin to me for some snuggles (these were very limited due to the various lines and wires he was attached to) and some sleepy smiles. My husband came up a little later and we got to love on him until we got to the hardest moment of our lives so far. Handing our 10-day old son over to the anesthesiologists whom we had just met and putting his life in their hands, as well as those of his incredibly skilled surgeon. It still amazes me how those grown, adult hands can do such magic with a strawberry-sized heart. Then we waited.
We were supposed to get updates every hour, but the first one took a little longer. They had started. We received the next when they were halfway done. Then they were controlling some bleeding. Then they were still working on the bleeding, but he was “very stable.” Then they were closing. And then he was back. We got to see him briefly before they had to get him settled in. When we came back, there were even more wires, more tubes, and a ventilator. Everything you never want to see. But at the same time, it all helped to save his life, so I’m grateful for all of it.
The days that followed were full of trying to wean him off of the ventilator, adjusting his meds to keep his blood pressure, heart rate, and pain under control, and listening carefully during rounds. We learned things they never specifically told us, like the fact that he went into v fib going onto bypass, or that he became critically hypertensive. Slowly, but surely, he began to get stronger. They started to wean his meds, and the lines and monitors got fewer and fewer. They removed chest tubes, wires, and eventually the ventilator. He began tolerating his feeds better and better (via tube).
The good news
Exactly a week post-op, he was strong enough to move to the step down unit. We had our own room with his crib, a couch, a bathroom, and a TV. Compared to the PCICU, it was practically a hotel. The nurse to patient ratio is lower, so step down is where you start to adjust to doing things on your own. The following day, we started feeding bottles for some of his feeds. He did so well that the next day we worked on exclusively oral feeding. The doctor told us it looked like he was doing well enough to go home in a few days. We were initially expecting 4-6 weeks, so hearing that 9 days post-op was wonderful. It was even more wonderful when we got discharged the very next day. On January 15th, at 10 days post-op and 20 day old, we got to bring our son home.
We are beyond lucky that he came home without oxygen or a feeding tube, and on only one medication. He learned how to nurse, which is something I wasn’t sure he would ever be able to do. Our biggest hurdle coming home was adjusting to life with three kids and figuring out our new normal with the typical sleep deprivation that comes with having a newborn. But we also had to adjust to the increased anxiety of having a heart warrior. We were so used to having him continuously monitored so that we always knew if he was okay. He started having breath holding spells (apparently this happens with healthy babies too, but it’s scary) and I developed an intense fear that I would wake up and he wouldn’t be breathing. So we eventually decided to get an owlet monitor for peace of mind at night.
Our new normal
We’ve balanced school and extracurriculars for the big girls, regular doctor appointments, cardiologist appointments, and nap and feeding schedules.
This is our new normal. It is full of worry, but so full of love. His special heart filled mine for a third time and I wouldn’t trade it for all of the restful nights and anxiety-free days in the world.
So to my sweet boy, if you ever happen to read this when you grow up…
You may not have been planned, but you are absolutely no mistake. This journey may be hard on all of us, but it will make us stronger as individuals and stronger together. You have touched countless lives, and inspired people on their darkest days. Your life is a gift. You are a gift. You are a warrior, and you are mine. On days that you feel weak, I will be your strength. On days when you feel sad, I will give you my shoulder. I am on this journey with you, every step of the way.
To all of the fellow heart mamas livin’ this life…
You are fierce. And you are not alone.