“The only whole heart is a broken one because it lets the light in.” (Rabbi David Wolpe)
Tonight, we will celebrate the fourth light of Chanukah. As we light the chanukiah, commemorating the miracle of the oil, our family will also stop to reflect upon our own little miracle. Our youngest daughter Noa will celebrate her heart-a-versary, the day that the doctors at Yale-New Haven Children’s Hospital saved her life.
I remember it as if it were only yesterday. There are moments in your life that become seared into your memory. December 23, 2002 is forever marked in mine. Noa was only 3 & 1/2 weeks old. She was frail and weak, born full term at only 4 lbs. 15 ounces. Now, she was down to 4 lbs. 11 ounces. Simply to eat, required more energy than her little body had to give. She had been on blood pressure medication and diuretics since her diagnosis only 3 weeks earlier. Brand new to this world, and already given syringes full of medications designed to save her life. No more than two-hour intervals passed in between her feedings. She drank from a preemie nipple, too weak to suck her bottle through an infant nipple. Her formula did not follow the directions on the box. Instead, we mixed double the formula powder with half of the water, trying desperately to increase her calories, fatten her up and get her a little bigger, a little stronger, for the open heart surgery she would have to endure. It hadn’t worked.
Our baby was in full-blown congestive heart failure by the time we handed her over to the anesthesiologist at the hospital on that cold, dark winter morning. As we waited for them to take her, I tried to memorize her face, her smell, her touch, her everything, before they took her away from me and into the operating room. What if she didn’t come back to me? Yes, I knew that we were fortunate that her heart defects were the “most common” types of heart defects. We were reminded constantly that her doctor performed this type of surgery “all of the time.” But he didn’t do it on my baby every day. There was nothing common or routine about this to me, to my family, to my precious little girl, so new to this world and already fighting for her life.
I placed her little body and her life into their hands and I watched as they walked away. I waited until they were out of sight, and then my husband and I walked through the doors to the waiting room and I fell to my knees crying. It was a primal kind of fear & anguish that is hard to describe unless you have lived it, and I pray you never have to. You never fully recover from experiencing that kind of fear, it leaves a scar.
They put Noa on heart lung bypass and she was on that operating room table for just over 7 hours. It was only later, after she had recovered and begun to grow stronger, that my mind even allowed me to think about her lying there. I would wake up crying and screaming from nightmares so vivid that I could barely catch my breath. It was my own form of post traumatic stress, my brain first processing what it could not allow me to take in during those earlier days. When the doctor came out of the operating room, he told us that our baby girl actually had an additional heart defect that they found when they went in. One little baby, her heart so very small, 3 congenital heart defects. He told us that she was one of the sickest babies he had ever operated on, telling us she looked as if she had “wasting syndrome.” It was true. She was skin and bones. Not an ounce of baby fat to be found on her weary little body. And then he spoke the words that remain forever etched into my brain. “You were only days away from losing her.” Days we didn’t lose due to the watchful eyes of her doctors and I believe, by the grace of God as well.
Have you ever wondered how you might say thank you to someone for saving your child’s life? I guess I should have thought about that, in the weeks leading up to Noa’s surgery. I mean, I had been given some time to prepare my words, as he labored with his team to save my baby girl. But, as Dr. Gary Kopf, cardiothoracic surgeon, walked us through the surgery, there were so many things going on in my head, that I simply couldn’t get my thoughts straight. When the time came, I simply placed my hand on his, looked him tearfully in the eyes and said, “thank you.” It was all I could get out, though he deserved so much more.
When we saw her in the PICU, we began to look first, as someone had told us, at her feet. That was the only part of her that did not have wires, tubes, bandages or blood.Then, slowly, we took it all in. Our little Noa, only a few weeks old, lying in that giant hospital bed, not breathing on her own, sedated, hooked up to tubes and wires, under plastic heating blankets and surrounded by nurses, doctors and so many machines. It’s not supposed to be like this, I kept thinking. I kissed her forehead and whispered to her that we were there with her, that she wasn’t alone. I told her over and over again, that we loved her and we would be with her so she shouldn’t be afraid. It was my mantra, spoken as much for myself, as it was for her.
Those first 24 hours were critical they told us. And as we settled into our first night in the PICU, the constant beeps and alarms of the machines hooked up to our little girl, terrified us. It was the nurses who got us through. They took care not only of our daughter, but of us, so calming & reassuring, so human. We were to take turns sleeping that first night. I sent my husband off for the first shift, in the little sleeping quarters off of the PICU. I never woke him for my turn, I couldn’t leave her. I lay my head as close to her little body as the machines, tubes and wires allowed, and I stayed with her. I was her mother, and I simply couldn’t leave.
In the morning, when my husband came in, the doctor’s arrived to take Noa off of the ventilator and see if she would begin breathing on her own. It was the first test in her recovery. Thank God, she passed and began to breathe on her own. On 12/24/02 at 10:30 AM her eyes opened and staring into those precious baby blue eyes, were my tired, weary, puffy, tear filled brown ones. I didn’t know it at the time, but the nurse had snapped a photo, telling me that one day I would want to have that moment recorded. She was right. My baby tried to cry, she was frightened and in pain, but her throat was swollen from the ventilator and all that came out was a primal whisper of a cry that broke my heart. How helpless I felt unable to ease her pain fear in that moment. I wanted to hold her, but I couldn’t. So I stayed where I was, looked her in the eye and told her over and over again that I loved her, that she was not alone and that it was all going to be okay.
We stayed a week at Yale. My husband and I took shifts staying with Noa, and returning home to shower, sleep and spend a few precious moments with our other daughters. Noa Greene, the little Jewish baby with the Hebrew name, daughter of a rabbi, was visited by many Christmas elves as she lay in the PICU on Christmas. It was a beautiful thing to witness the stuffed animals, handmade quilts and little baby toys that were so generously donated to the hospital, and appeared on her bed. Faith, no matter the denomination, can be a true wonder to behold. Miracles can come in all shapes and sizes. They can be found in the kind acts of volunteers who cheerfully hand out gifts to children, or who donate a catered Christmas dinner for the staff and families spending the holidays in the Pediatric Intensive Care Unit. They can be found in the healing hands of doctors and nurses and in the love and support of family, friends & community. Miracles can be found in ancient stories of old, in the story of oil meant only to last for one night, that burned for eight. And, miracles can be found in the heart of a little girl who will celebrate her heart-a-versary tonight, a strong, vibrant and healthy child, whose story continues to unfold with each & every blessed day.