I have slept 72 nights in children’s hospitals, all of them as an adult. The longest stint, 58 nights, was our first. It all started days before Grace’s three-month birthday. I handed her barely eight-pound body over to a cardiac anesthesiologist for the surgery we’d been awaiting with dread since we received her congenital heart defect (CHD) diagnosis at one week old.
To this day, I can hear my obstetrician confidently stating at our 20-week anatomy ultrasound that the baby’s organs looked “perfect.” That word still rings in my ears and stings my heart. After receiving Grace’s Down syndrome diagnosis at birth, we thought we’d dodged the CHD bullet received by roughly 50% of parents in the same position. The pediatrician repeatedly listened to Grace’s heart for what seemed like minutes at a time. She couldn’t detect a murmur. Grace’s oxygen saturations seemed fine. Because of the high incidence of CHD in people with DS, a cardiologist appointment was scheduled as a formality.
My husband and I had entered the room where Grace would have her first echocardiogram, joking. I can’t remember what about, because, in one of the most definitive before-and-after moments of my life, that was the before.
My memory begins when the cardiologist brought over the pen and paper. As a hospital veteran, I’ve since learned that this is an ominous sign. Physicians’ drawings usually include two parts: the typical/desirable/acceptable way things should be, and the way things are in your situation. In our situation at that moment, Grace had virtually no septum between the right and left sides of her heart. The murmur that the pediatrician was listening for would have been produced if blood passed through holes in a septum, had one been present. But in Grace’s heart, the space was so large that the blood moved freely and silently.
Open heart surgery was inevitable. One day soon, they would take my tiny baby, split open her chest, reroute her blood through a machine, and miraculously fix her heart. Otherwise, she would die.
I remember nodding, my eyes fixed on the cardiologist as I simultaneously absorbed the details and gripped Grace a little tighter, ready to bolt for the door. My instincts told me to grab her and flee. But this was one problem I could not run away from.
The nearly three months leading up to her surgery were exhausting. I envied mothers who laid at home with their newborns, welcoming guests, eating freezer meals, and marveling at how ecstatic they felt considering they’d probably never been so sleep deprived in their lives. I longed for cabin fever and delirious sleeplessness, awoken every couple of hours by the cries of a hungry, thriving baby. I wished I could look at my sweet child with overwhelming joy, love, and hope without fears of death always lingering in the background.
Our newborn life was full of all sorts of commitments we never expected: therapy two to three times per week, medical appointments on the off days, and all of these trips more than 45 minutes from the house we had chosen to be near the rural University where my husband worked. Grace rarely woke us to eat. But we frequently woke her at all hours of the day and night, hopeful that this would be the time she could stay awake long enough amidst her physical exhaustion to finish all, most, or even some of a bottle without spitting most of it back up. Our goal was weight gain. The bigger she was, the easier the surgery would be technically, and the stronger she would be for recovery.
At just past two months, it was clear that our goal was elusive. Grace weighed less than eight pounds, and the cardiologist decided we’d met our tipping point. It was time to schedule the surgery.
The surgery went well, and the repair was very successful. After a couple of days, Grace’s breathing tube was removed, and we were able to hold her. It was terrifying and clinical. I worried so much about accidentally pulling out an IV or positioning her in a way that made her very large, very fresh incision sore. Still, once the nurse helped to settle her in my arms, it was gratifying to see her vitals improve. Finally, I felt something like a mom again.
These feelings of contentment would be short-lived.
A member of our local DS organization had a daughter who’d had the same heart defect and surgery as Grace. She also happened to be a nurse practitioner in the Cardiovascular Intensive Care Unit (CVICU) where Grace would recover. She offered to answer my questions before surgery. Always a pessimist, I focused on the risks. She listed pulmonary hypertension, endocarditis, secondary infections…after each one, she assured me, “but that won’t happen to her. The risk is small.”
We have since come to chuckle when a medical professional speaks in terms of small risks or high rates of success. On the outside, we seem jovial. On the inside, we’re shuddering, thinking of every painful, frightening, life-threatening time Grace has been the exception to odds. We have come to automatically assume that any small risk a physician deems worth mentioning will become a part of Grace’s course. And we have rarely been wrong.
The endocarditis diagnosis, an infection of damaged heart tissues, came first and with it, a six-week course of IV antibiotics. We quickly realized our seven-to-ten-day stay had been extended. But we had no idea. Within a week of surgery, Grace was battling severe pulmonary hypertension and had an extreme episode one night when her vitals went haywire.
We almost lost her.
The next day, they reinserted a breathing tube, and the real saga began. We were on a roller coaster that also involved multiple respiratory infections and Grace’s refusal to eat.
Because I stayed at home with Grace, and we had no other children, I was fortunate to be able to stay with her in the hospital, around-the-clock, for the duration of her stay. That is a gift for which I am ever-grateful and I know is not an option for many families.
Our days started before 5 am with a chest x-ray. From there, my husband would drive the 50 minutes home to grab a nap before heading to work. I spent days talking with nurses, a variety of physicians, and therapists. I threw myself into engaging with the staff. I asked questions, built rapport, and absorbed every word I could understand about Grace’s care. I was grasping for some sense of control in a situation where I had virtually none.
Emotionally, the hardest weeks were the ones when Grace was on the ventilator. I felt a need to connect with my child, but she was sedated, and we couldn’t hold her. I usually felt more like a nurse’s assistant than a mother. The physical signs that I had recently given birth were often the only reminders that I had a child. At the most distant moments, I had to consciously remind myself that her body, sedated and surrounded by all of the tubes and wires, was not just a person, but my daughter to whom I’d given birth just a few months earlier. And who, just before that, was an idea of someone that I never could have dreamed would have to endure all of this. Often overwhelmed by emotion, I stood at her bedside, my back to the door, and pretended to read her books while I wept quietly over her tiny body.
Days passed in a blur of consultations and procedures, while the weeks dragged on like months. We went from thinking we would be home just in time for Grace’s first Thanksgiving to being assured we would be home for her first Christmas to ringing in the new year beside her hospital crib. At one point, we asked the staff to stop talking about home. And we tried to control our jealousy each time another patient rang the farewell bell as they walked out the door.
On the darkest nights, I whisper-screamed at God in the bathroom, fists clenched and hot tears streaming down my cheeks. Silently sobbing, I would beg Him to tell me what I had to do to spare that poor little girl all of this suffering. The answer, of course, was just what we were doing. Wake up. Put on your strong face. Ask all of the right questions. Love your daughter. And prepare yourself for another day of the same, or worse. Repeat.
Then, one day, after innumerable setbacks and apparently just enough steps forward, a nurse practitioner asked if we’d like to go home that day. We thought she was joking. She wasn’t.
We had lived in this hospital for much of Grace’s life. We had endured some of the darkest moments we’d known. Finally, we got to leave with the only gift we cared about – our daughter, weak with a feeding tube and oxygen, but smiling and repaired.
It’s been over five years now since that experience. Time buffers blows, but small reminders crop up and sometimes sucker punch me so hard that they knock me breathless. This will always be a part of our story, and it will never cease to be painful.
If I could take away the suffering Grace endured, I would do that in a millisecond. Thankfully, shes doesn’t remember it. As for me? It’s hard to admit, but knowing the ending, I would endure it all over again. The relationship that grew between us amidst all of that trauma built in our family a sort of irreplaceable “us against the world” mentality that bonded us closer than we could have achieved otherwise.
I wouldn’t be the mom I am now without those weeks of misery. I consider myself, much to my shame, a bit of a doormat. Living in the hospital ignited a fire in my belly that I wish I could harness every day. Hospital Mom Heather is confident, informed, unflinchingly strong for her daughter, polite but firm with medical staff. I have used these skills more times than I would like to admit, and I am glad to have honed them early in Grace’s life. I’m sure they will get plenty of use as I advocate for her in the coming years.
I am thankful that our story allows us to relate to other families who have endured similar or worse situations. In sharing our suffering with those who can empathize, I believe it makes everyone’s loads just a tiny bit lighter.
If you are a hospital mom, a recovering hospital mom, or facing a hospital stay, I am so, so sorry. I know this life with your child isn’t what you’d always planned on or dreamed of. It doesn’t feel fair sometimes, does it? I want you to know that I see you, and I think of you. I hope that as time passes, you can find value in even the awful, devastating experiences, even in the wounds that never fully heal.
No one will ever know what you’ve gone through. It will always seem like someone has it worse. But I encourage you to own your grief and deal with it your way. I hope that you will get past it someday. For now, grieve and sob and whisper-shout. Whatever it takes for you to get some relief. Just keep waking up and stepping up and loving. Don’t be afraid to rely on those around you when you need it. If you need someone to listen, I am here for you: firstname.lastname@example.org.