It all started with a parking spot. A parking spot on the second floor of the parking garage at MUSC Children’s Hospital in South Carolina. It was exactly a year ago today, March 12th 2017 that my husband and I parked in that exact parking spot at 0400(am) and quietly walked to labor and delivery with my swollen belly leading the way. We were very subdued. There was no diaper bag, no car seat…only a single preemie sized outfit. At home, there was no nursery covered in all the pink things. No dresser filled with pretty pink dresses. No blankets, bottles or binkies.
We had lived the last 9 months mourning the life our daughter would likely never have. Instead of planning for our future we were begging God for minutes. Enough to look her in her eyes and tell her how loved and just how wanted she was…how perfect she was to us. You see, she was diagnosed with Trisomy 18, also known as Trisomy 18 early on in our rainbow pregnancy. Trisomy 18 is the second most common trisomy, behind Trisomy 21, #DownSyndrome. However, Trisomy 18 is considered by and large, as “incompatible with life”. A condition that Google makes sound like a monstrosity.
We had our ducks in a row. Funeral arrangements made, a birth photographer on standby, and a special outfit picked out. But we also went in, armed to the teeth with research, first hand stories from other families and a list of interventions we knew she would need to survive. But the first step was getting her out alive, and that part, was up to her. We had the rare fortune of being at a “Trisomy friendly” hospital with doctors willing to perform an emergency C-section if need be. Neonatologists willing to give her life saving interventions. A cardiac team willing to perform heart repair if she survived long enough. But it was all in her hands.
Her name is Harper Grace and the entire pregnancy she did phenomenal. She was very active and the only “marker” she showed was her VSD, a hole between the lower two chambers of her heart, while in utero. We had hope that she might do well if she could survive birth. So, on March 12th2017 my husband and I parked in that very specific parking spot and walked hand in hand up to labor and delivery.
Harper Grace would hold strong through my induction for nearly 40 hours. She was stubborn and was not ready to leave her mommas belly. On March 14th , it was very suddenly decided that her heart was not happy with the events taking place and she was born via emergency C-section at 2356, weighing 4lbs 7oz and 17 inches long. As it turns out, Harper Grace, more affectionately known as Bean, was born a fighter. Once she was stabilized and moved to the NICU she did really well, all things considered. Our NICU team was supportive and listened. Our palliative care team advocated for hope and helped express our wishes for Harper Grace and her care. And we made lifelong friends with her medical team, who would become family.
But the journey was by no means easy. While in the NICU step-down unit at 2-3 months of age she contracted parainfluenza virus type 3. Up to that point she had been fairly stable. But everything changed….her world turned upside down with that virus. Her team, and her daddy and I were all terrified it was going to be the end of her. By the grace of God she pulled through but it changed everything about her plan of care and how she was progressing. In my heart of hearts I truly believe that her paraflu battle is what sent her into early heart failure. She was never able to come off oxygen after that and the signs and symptoms of heart failure started to show their ugly faces. A growing oxygen need, excessive weight gain through fluid retention, sweating episodes, sleepiness and lethargy. Heart repair was obviously needed and our palliative care team got the ball rolling.
On July 4th we were transferred out of the NICU and to the PCICU (pediatric cardiac ICU) and started the journey toward heart repair. Our team made it clear that while they thought it would be successful, that she would have a rough time post op with pressure changes. As ready as we thought we were… there is nothing to fully prepare you for what we went through with her. While she pulled through surgery perfectly, less than 6 hours post op, her blood pressure crashed and she coded right in front of us.
Everytime I try to remember what it was like, I get this very strange feeling in the pit of my stomach. I see the same tunneled vision view of our off going cardiologist attending telling the oncoming attending Harper’s history when all of a sudden her alarms started to scream. I see a man I’ve never laid eyes start crushing Harper’s tiny freshly sawed open chest as he provides CPR. I see the nurse manager drawing up 1, then 2, and finally 3 “code doses of EPI”. I hear the doors to the ICU slam open as the pharmacy team runs in. I see a resident running over with the crash cart. I see the pads attached to her and I hear them “clear” her for defibrillation. Within what was probably seconds 20 people materialize out of thin air to help assist saving my baby girl. A chaplain who we had never met before tries to come up and comfort us and distract us from the fact that Harper was essentially dying. That’s one thing that stands out the most. We are creatures of habit and we were and still are very fond of our chaplains within our Palliative care team, so to have a stranger try to comfort you in a way only our beloved team could, still makes me cringe. The woman did nothing wrong but it was the most awful feeling ever. She didn’t belong there. What did she know that I didn’t?
The whole thing lasted maybe 10-15 minutes but it felt like hours. My vision was blurry around the edges. Other than the few things I described, I couldn’t hear anything else except for a very loud buzzing. My face was tingly. Even as I write this, it still tingles, and I’m genuinely queasy. I have legitimate PTSD and #Anxiety from that event alone. Never mind all the other events of her life.
Harper Grace pulled through that event, but continued to have a very rough couple of days. She ended up coding in front of me again a few days later. Her daddy had to go to work for no more than an hour or two and I was by myself that time. It was harder than the first time without him being there. And her second incident is the one I have nightmares about. Again, CPR was preformed, and again, all kinds of superhero’s in white coats and blue scrubs saved the day. And I can’t be certain, but I’m pretty sure there was an actual angel by my side. A beautiful woman with the sweetest smelling dreadlocks held me and comforted me in a way that only a mother knows how. She prayed with me and held me while the crash team saved Harper yet again. Our amazing Palliative team came to be with us both times, and provided us the most hope. Assuring us it wasn’t Harper’s time, and promising to be with us if that time ever did come.
Harper’s entire hospital journey lasted a total of 162 days…23 weeks…5 ½ months. I wasn’t counting or anything. It included 2 surgeries, one of those being heart repair. A nasty virus and a NEC scare. But true to her spunk, she defied the odds, coming home from the hospital on August 23rd.
We’ve had so many ups, and a couple of downs. But we celebrate the good days. Decorating her nursery, going to bed with her under our roof, dressing her up as a peacock for Halloween. Taking her to see Santa, reading her stories, pushing her to be better each day in her many therapies. She’s been featured several times in various formats for Beads of Courage. Life with her this last year has changed me forever. She’s made me realize things about myself, I never knew existed. Because of her, I’m walking away from an 11 year military career to go to nursing school. Because of her, I’m going to help other children like her and families like ours.
She’s also brought many new friends into my life. The Trisomy families I’ve met on this journey have become some of the most important people in my life. These mommas, their kiddos and their husbands inspire me. We feed off of each other daily, providing new knowledge to each other, encouraging each other, supporting each other. We are part of a tribe none of us would have chosen, but it’s a club that has made surviving this last year possible. And for that, I’ll always be grateful to my daughter.
Today is March 12th 2018, and I’m parked in the same parking spot this evening as I was this exact day last year. Harper Grace is currently in the PICU from rhinovirus, the common cold. As I sit and reflect on our journey over the last year, and realize that in 2 days she will be a year old, I’m moved to tears. Everything she has been through. Everything our family has been through…sure it’s been hard, but it has been amazingly beautiful. The hardest most beautiful journey I could ever have taken. And while I’m sad we will spend her first birthday in the hospital, I know that we will bust outa here in a few days and celebrate even harder. I know that there is a life ahead of us WITH her, and that we will pull out of that parking spot. I no longer fear what lies ahead. We will leave that parking spot stronger, and ready to take on the next adventure as we live our amazingly beautiful life with our beautiful Harper Grace, who just happens to have Trisomy 18.
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