Life as a Heart Mama

I have stood next to the table in a pediatrician’s office, holding my breath as the doctor takes a second listen to what is probably an “innocent murmur”, watching her close her eyes and focus all her energy on the sound of that tiny rumbling heart; the very same heart that we thought was fine for the first two months of her life.

I have sat next to my fragile two month old as a tech investigated her heart with an ultrasound wand, the same sort of wand that looked inside my belly to catch glimpses of her before she was born and failed to find anything amiss.

I’ve felt my heart catch in my throat as we left and the tech told me to call the doctor if we don’t hear from them within two hours.

I have answered a frantic call from our pediatrician, explaining that something significant was wrong with our baby’s heart, and we needed to go to the emergency room quickly. I couldn’t hold on to the details beyond the fact that something was definitely wrong and it was bad enough to need to be in the emergency room immediately.

I’ve sat in an emergency room and been told that my tiny, perfect two month old has a large hole between her ventricles and that she is actually in congestive heart failure because it had been untreated for so long, that she definitely needed open heart surgery…it was only a question of when.

I have lived in a hospital with my husband and baby, while my other children were with friends and family; willing her to grow, willing the fluid on her heart and lungs to go away, watching her fight with an NG tube, pumping breastmilk around the clock and grieving the loss of being able to feed her directly because her heart simply could not take the added effort.

I’ve experienced the elation of leaving the hospital with my baby, knowing that we have time together at home before they have to open her chest.

I have woken in the night in a panic more times than I can count, placed my hand on her chest to make sure that she was breathing and her tiny, overworked and broken heart, was still beating.

I’ve felt a surgery date looming on the calendar with palpable tension; the hope that her heart would be repaired and dread that it had to happen at all, and what the other outcomes could be.

I’ve handed my six month old off to a stranger, who carried her to an operating room where they would intubate her, stop her heart, crack her fragile chest, open her strawberry-sized heart, and patch a measurably tiny hole that is enormous in functional terms, and put her back together again.

I have sat in a waiting area; eating, drinking, pumping breastmilk, playing games with friends to busy my mind, while my heart never left that operating room.

I’ve waited with bated breath for our restaurant-style pager to vibrate, signaling we could meet with the PA to get updates; “She is doing great so far”, “Perfect vitals”, “They are in her chest now and in the process of putting her on heart-lung bypass.”, “VSD is repaired, heart is closed and restarted!”, “Surgery is done. She did perfectly!”.

I have walked into an CVICU room and seen my sweet baby intubated and on a ventilator, with an NG tube, a central line in her neck, two peripheral IVs, a chest tube, pacing wires in her tiny body and an amazing amount of machinery surrounding her. It had only been 6 hours since I’d seen her, but it felt like at least a day.

I have sat by her bed, unable to fix her pain, unable to feed her, unable to hold her through the worst moments of her life.

I have “slept” hanging half way out of a hospital crib, trying desperately to give my baby some measure of comfort.

I’ve celebrated every great and microscopic victory; a finger-squeeze, her open eyes, the first time I was able to hold her again, each tube and wire she was freed from, leaving the CVICU, the first time we could finally nap next to each other again, the first smile.

I have rejoiced as we left the hospital to go home with our survivor, and understood that not all families are as fortunate as we have been.

I have held my baby down for too many needles, reassured her through too many tests, too many doctor’s appointments.

I have continued to wake up to feel her heart thumping in her chest instead of that old jet-engine rumble, to feel thankfulness rise up in me every time.

I have traced the thin, translucent scar running down her perfect little chest in awe, countless times, and I have taught her about her “zipper”.

I have felt anxiety grow in me before every check-up, and felt deep relief as she has been given good reports so far. I know that may not always be the case and that knowledge is never too far from my heart.

I have been a heart mama for 948 days; and I will be for the rest of my life.

1 in 100 babies are born with a congenital heart defect, and not all babies are diagnosed before or even at birth.  Make sure that your ultrasound tech pays special attention to your baby’s heart at the anatomy scan, and consult your pediatrician if your newborn shows any signs of a heart defect.