Archive for the ‘Other Pieces of our Family Life’ Category
“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.
I’ve spent a good part of this past week getting my life organized. The coupons have been cut & filed, the expired ones thrown away. The laundry is done & the school supply lists are printed out and ready to go. But my most significant mission was to put together the “Master Calendar” for the school year. On this giant calendar, I have entered important work days & school days. I marked the half days & the days off, the open houses & the school sneak-a-peeks. Amidst all of these dates and times, I noticed that next week I’ll be taking my 8-year-old daughter to the pediatric cardiologist the day after I take my husband for his MRI.
Let’s start with my husband’s appointment. It’s been almost 1 year since Fred was diagnosed with Multiple Sclerosis. It started with his vision becoming clouded & dark in one eye. Each day got progressively worse and he went from the internist, to the ophthalmologist & on to the neuro opthalmologist . An MRI revealed 5 lesions on his brain and the diagnosis was given. I remember that moment so clearly. The doctor, lacking any real warmth or bedside manner, delivered the news and sent us home with thick packets of information that we could use to choose a medical course of action. First came the massive doses of IV steroids to stop the swelling of the optic nerve. I would liken Fred’s experience with that to Prednisone on steroids. It was a week of IV drips, sitting 45 minutes at the dining room table, hooked up to a line and being tended to by me, nurse Deborah. The effects on his body from such massive doses of steroids lasted for weeks and seemed to leave him feeling worse & not better. It was hard to watch my husband struggling, to feel so powerless to make things better. But every day he got up, put his brave face on and went to work. He wore a patch over his left eye and was lovingly referred to as “The Pirate Rabbi.” He eloquently & thoughtfully shared his diagnosis with the congregation and his honesty was met with overwhelming love and support. In time, his eye healed and the symptoms of the steroids subsided. MS became yet another diagnosis that our family learned to live with, and in time, even laugh at. But there were many tears shed, and a good amount of them were mine. I felt as if life had once again kicked my family in the ass. “It’s enough!” I remember saying over & over as I cried on the phone with my friends. After all, we had lived with Yael’s diagnosis of autism and all of the challenges that come with that. That alone would cause most families to cry “uncle” to the universe. But our challenges hadn’t ended there.
When our youngest daughter Noa was only 3 1/2 weeks old, she endured a 7 hour open heart surgery at Yale University Hospital in Connecticut. This had not been an easy pregnancy. The doctors noticed at 18 weeks that she wasn’t growing properly. I endured ultrasounds every other week and non-stress tests on the weeks in between. Every week I went in to the doctor’s office knowing that if Noa wasn’t growing, they would have to deliver her prematurely. And every week that I left with her still safely tucked away in my tummy, I would cry tears of relief. When she was delivered at full term, it was by cesarean section. She was a “Frank Breech” which is basically when the baby’s tush is down toward the birth canal and the legs stick straight up in front of the body, with the feet near the head. She was what they call a low birth weight baby at only 4 lbs. 15 oz. My relief at having delivered her safely, was soon replaced with worry. She slept all of the time and it was incredibly difficult to rouse her for bottles. I was told not to worry, that it was common for such small babies to sleep more in the beginning & as long as she was eating something, there was no need to be alarmed. But that voice inside of my head just kept getting louder and telling me something wasn’t right. On the day of discharge, the pediatrician on call came in to examine Noa and told us he heard a murmur. Though on the surface he didn’t appear alarmed, that voice inside of my head got even louder. The next day our own pediatrician confirmed the murmur and sent us to a pediatric cardiologist. He said that 90% of the time these murmurs are benign, but I knew in my gut that we would fall into that other 10%, and so we did. At 3 1/2 weeks Noa was in full-blown congestive heart failure. Our efforts to fatten her up and get her stronger for the surgery were not working. She was down to 4 lbs 11 oz. and it was time to act. That moment when I handed my daughter over to the anesthesiologist is forever seared into my mind. I was, quite literally, putting her life into the doctor’s hands. I walked out of the door and fell to my knees sobbing. For 7 hours my baby was on that table and when we finally got to see her in the PICU, her feet were the only part of her that didn’t have bandages, tubes or blood. She was on a ventilator, laying in an adult size bed, hooked up to wires and that image too is indelibly scratched into my brain. She came home a week later and through the winter months we nursed her back to strength. By the spring she was a chubby little baby, off of the meds and growing each & every day. The scar on her chest a permanent reminder of what she and we had endured.
So next week I’ll take my husband for his MRI and I’ll be saying many silent prayers as I sit in there with him, holding his hand. I’ll pray that the nightly shots he endures are working. I’ll pray that there are no new lesions and that, at least for now, we have kept MS at bay. And the next day, I’ll take Noa to the cardiologist and pray for a “routine” examination. Twice now she has given us real scares, the doctors finding cause for concern. Twice now we have faced the possibility of another open heart surgery for her, agonizing over the mere thought of it and, thank goodness, twice now there have been reprieves.
Still, I never walk into these appointments nonchalantly. Three times now, our life has turned on a dime. When that happens, you learn never to take things for granted. First Yael’s diagnosis of Autism, than Noa’s Congenital Heart Defects & I pray that last, though certainly not least, Fred’s MS. People tell me all of the time how strong I am. They look at what our family has endured and they marvel at how we do it. They tell me I’m strong~but I don’t feel strong. They tell me I’m brave~but I don’t feel brave. If I am being honest, I do feel at times like the universe should pick on somebody else for a while. But then I find myself reflecting on a saying I once heard. ”Don’t compare your life to others’. You have no idea what their journey is all about.” In other words, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.” (Regina Brett) So, my family’s challenges are our own. Some days they suck and at times they are overwhelming. Some days they cast a shadow of fear & anxiety and some days still, many tears are shed. But most days our challenges exist in the background of our most ordinary days. They are woven into the fabric of our family quilt, but they are not what is most prominent. There are physical scars and emotional ones too. But they are overshadowed by the healing that has taken place over the last months & years. We make jokes about our circumstances because laughter really is good medicine. We focus on our blessings and we are grateful to live in a time when Autism, Congenital Heart Defects & Multiple Sclerosis can be helped through the advances in medicine & education. We’ve searched for a lot of rainbows on the darkest of days, just to offer a glimmer of hope; and we’ve found it in the love & support of those we hold dear. We have found it in the prayers of strangers, the hands of physicians & the unwavering commitment & care of friends and family. But most of all, the five of us, me, Fred & our girls… have found it in each other.
So, the “Master Calendar” holds the reminders for next week. Two appointments. Two of the challenges we have faced. Two reasons to reflect on the fragility of life & the resilience of the body and the human spirit. And two reasons to be grateful that Leora, our middle daughter, only needs a new set of glasses
”Life isn’t about how you survived the storm … it’s about how you danced in the rain.” (Regina Brett)