[Written in 2002/2003]
“O my Lord, I dedicate that which is in my womb unto Thee.”
– Baha’i prayer
In my photo album are three pictures, each a day apart, that show how drastically and quickly life can change.
In the first picture, taken March 24, 1998, I stand huge-bellied in an ocean sized white t-shirt, my husband with one arm around me, his other arm holding our pink-clad two-year-old daughter, Andrea.
In the second picture, taken March 25, Doug, Andrea on his hip, stands behind a hospital bassinette, in which lies a little lump of blanket, the peach-fuzzed head of a newborn poking out.
In the next day’s picture, March 26th, I reappear, the bulge in my belly gone, my eyes squinty from dried up tears. Doug again holds Andrea, who wears an orange mask over her nose and mouth. My diapered, otherwise naked newborn baby lies under a clear plastic oxygen tent in a shallow-walled crib lined with soft white blankets. We are in Seattle Children’s Hospital. And my baby is dying.
At 11:00pm of March 25th, a nurse had stirred my resentment by pushing light into the square, slick-walled hospital room and waking me up. I had finally fallen asleep after a long afternoon of giving birth, visiting with friends and family, and then trying to nurse my tiny new baby, Johanna, swaddled up in white and pink blankets.
My first words after Johanna was born had been, “She’s so blue!”
“She’ll pink up soon,” assured the midwife. And sure enough, the purplish hue of her skin slowly became more pink. Though the birth had gone very quickly and smoothly (the midwife barely had time to put a hospital gown over her clothes and put on gloves before catching the emerging Johanna) I was exhausted from a full afternoon. So when the nightshift nurse came to take the baby for an exam, I pleaded with her, “Couldn’t she just stay here and sleep, and you can check her later? If you take her now, she’ll come back awake, which means I’ll have to wake up, and I’m so tired…”
The blue-garbed woman listened, her brow wrinkling with concern and consideration, but she decided to take Johanna. 15 minutes, she had said, and then she would bring her back.
But when I awoke two and a half hours later, the nurse had still not returned with my baby. I put on my fluffy pink robe, and entered the light-flooded world of the hallway.
I walked toward the nurse’s station, and heard from the nearby nursery the tiny, insistent screams of a newborn. Whose baby? There was no one at the nurse’s station, so I opened the nursery door and peeked inside. There, a woman held down a wailing infant, tiny limbs flailing, as a man tried to poke a needle into his or her flesh. I was confused at first, not yet recognizing my baby’s cry, since I had barely heard it so far. That couldn’t be Johanna? I scrutinized the baby on the clear plastic platform, and noticed a slight purple tint to her skin.
“What’s going on?” I asked .
After the doctor had finally gotten an IV into Johanna (only the head veins were large enough), he informed me and Doug that Johanna would need to be taken to Children’s Hospital. At about 3am, we gathered up our belongings, preparing to follow the ambulance that held our baby. They’ve made a mistake, I kept thinking. The doctor’s words would not absorb into me. Something about the level of oxygen in her blood being low – 70 instead of 100. Emergency surgery. “Prostaglandins” keeping the “ductus arteriosis” open. I remembered those words from college classes, but never thought they would hold such power over the life of my daughter. As my husband and I numbly loaded ourselves into our car, I held the image of my little baby, lying swaddled in a clear plastic bubble-like container, tubes taped and bandaged to her head, and the tiniest of pacifiers completely hiding her mouth.
For the next two weeks I lived at Seattle Children’s Hospital, and all of my energy was focused on Johanna. The Baha’i writings say “…strive that your actions, day by day, may be beautiful prayers.” I may not have been beautiful, but I was all action. I moved swiftly through the hallways of Children’s Hospital, in black knit pants and a burgundy sweater, curly mud-blond hair springing out from my head. I could be seen wandering from ICU to breastmilk pumping room to ICU again, perhaps glimpsed briefly in bathrooms or in kitchen doorways, placing a container of breastmilk into a freezer. I was a human reduced to an obsession with the tenuous life of my baby daughter. Though still in her world, I was in a realm where I could do nothing to help her. All I could do was haunt the hospital hallways like a ghost.
Though often busy with visitors, pumping, hygiene, eating, walking, and being with Johanna, occasionally I would find time to go to the parent center, and especially to the tiny chapel located inside.
My diary entry for Saturday, March 28, says, “I am in the chapel, and I have had my morning cry.” I remember sitting in the back on one of the many foldable chairs crowded into the tiny, windowless room. In the front of the room was a podium, on which sat a basket of fake flowers and ivy. On a shelf to the side of me sat a large book in which parents in various stages of grief or relief had signed their names and comments of encouragement, sadness, or exultation. I leafed through the pages and came to an entry by a parent who had lost a child. “Why did this happen? We miss you so much.” The powerful sadness emanating from the words scrawled on the page struck me like a blade. I had to leave the book and sit down. I took my Baha’i prayer book and opened to a passage I had read while I was pregnant:
“O my Lord, I dedicate that which is in my womb unto Thee.”
Tears streamed from my eyes at the idea of giving my child back to God. I forced myself to continue the prayer, choking with sobs and hardly able to see through tears, my face wet and dripping on the page below me.
“Then cause it to be a praiseworthy child in Thy Kingdom and a fortunate one by Thy favor and Thy generosity…”
God’s Kingdom didn’t necessarily mean living with me. How did I know that staying alive in this world was more fortunate than moving on? Maybe Johanna’s body was too weak to survive – maybe to struggle through this life would be like torture for her. I tried to detach, to defer to God’s wisdom, to show God that I believed He knew better than I about what would be best for my little daughter.
“But please God,” I cried in soft hiccups, “If she could live… please…”
For the most part, though, outside of the little chapel, I was dry-eyed and strong. Until the day I cracked. It had been 1 ½ weeks since Johanna’s surgery, and I had allowed myself to think that Johanna’s puffiness was miraculous baby fat, a sign of her getting better. A nurse told me that she was actually retaining liquid because she was going through heart failure. In fact, Johanna was not getting enough nutrition.
Two days later a nurse in a white-haired bun and glasses made it clear to me that if Johanna did not start keeping her food down, she would be in serious trouble. After vomiting at three separate feedings in one day, she desperately needed calories and weight gain. I took this as a personal mission and determined to breast feed Johanna. For 40 minutes, I sat in a rocking chair and fed my tiny baby. About half of that time was spent with her crying, fussing, or me burping her or trying to wake her up.
Though I was confident that Johanna had been well fed during our nursing session, the white-haired nurse, rushing in to finish up before her shift ended, insisted that Johanna have 50 cc’s of formula-supplemented breastmilk dripped into her naso-gastric tube. Scared into submission, I allowed her to pour formula-enhanced breastmilk into the clear plastic syringe tube taped to the back of the metal crib. I watched the level of beige liquid oh-so-slowly decrease as food slid down its tube and into the nose of my sleeping, propped up baby. I sat resting, so tired, but so awake. After about 40 minutes I heard it – that familiar urpy sound that scared me more than anything at that point. I immediately jumped up and tipped Johanna’s tiny body to the side just in time for her to vomit all over her hospital bed, the tiny white, mostly threadbare hospital blankets filling in with messy liquid beige. In that moment what I had been keeping down came up as well – the tears would not stop. The nurse who had just come on shift was summoned over to help with the emotional and vomitous mess, but I kept sobbing, even as I removed the clothes from Johanna’s tiny, unhappy body, gathering up blankets, holding my baby, rocking her, full of love and anger and sadness, crying myself numb.
The new shift nurse gently insisted that I go home and get some rest. For the past ten days I had gotten no more than 5 of hours of sleep (not in a row) each day. It was time for sleep, instead of action, to become my prayer.
The next day I awoke in my own bed, my heart melting in the sunshine that filled up the room. The brightness and warmth felt like good omens. My prayers were less desperate, but still constant. Even as I lived a few moments in my home with other family members, a part of me was with Johanna, and anxious to be back with her.
I returned to Children’s Hospital that morning, ready to help Johanna get better. And she did. The doctors adjusted her medications. I breastfed Johanna on demand during the day and allowed myself to rest while nurses fed her supplemented bottled breastmilk at night. The various tubes and wires sticking out from Johanna’s body were, one by one, removed, and in a few days she was allowed to go home.
But Doug and I knew it was not over. The doctors had told us that Johanna would need two more surgeries before she was two years old. These surgeries would bypass the ineffective right side of her heart and reduce her heart to two chambers instead of four.
Meanwhile the prayer network had begun. All of our friends and family were aware of Johanna’s condition and were asked to keep her in their thoughts and prayers. Johanna was added to several church prayer lists. A prayer for her was placed in the Wailing Wall in Jerusalem. Baha’is literally all over the world, including the Baha’i World Center in Haifa, Israel, were asked to say prayers for Johanna. Daily life continued, with diaper changes and bathing and feeding and constant activity, and always with an undertone of prayer that everything would turn out for the best.
On October 14, 1998. Doug and I sat in the surgery waiting room at Children’s Hospital. Johanna was having an exploratory catheterization before she would undergo open-heart surgery. We sat next to each other in low poofy pleather chairs. The room was surrounded by a wall of sparkly opaque glass blocks and was filled with toys. Doug and I watched a little boy in footie pajamas push colorful beads along wood-anchored wires. I peeked at the boys’ parents, who sat close to each other, as Doug and I did. Doug held my hand, joked with me, whispered to me, lay his head on my shoulder.
After a little over an hour, the white-clad cardiologist and nurse came out, looking strangely buoyant. They told us that Johanna’s heart had more function than they thought it would, and they had canceled surgery. Doug and I nodded and asked questions and listened to their explanations, slowly realizing what they were saying. We asked the doctor why this had happened, and he couldn’t say. He mentioned something about the regenerative power of young bodies, but the expression on his and the nurse’s faces showed that this was very unexpected, and not something they had seen often, if ever before.
We were cautious at first, listening for the doctor to express some caveat. Yes, of course her heart was still not normal. She would still take medicine every day. But she was going to have a four-chambered heart. Though my husband considered himself agnostic at the time, he had been compelled to pray through this experience, appealing to whatever higher power might be out there and willing to help. Doug and I both had a feeling, in that moment, that God had been listening to our prayers. Wide-eyed and awe-struck, we let it sink in.
Doctors would not be sawing open Johanna’s chest two more times before her second birthday. The image of my daughter, opened up and lying in a bed of ice like a flayed fish, did not have to be suppressed in my mind any longer, and instead flew away in a burst of elation. No more surgeries!
Today Johanna is a brilliant almost-seven-year-old. Her spirit bursts through like sudden gusts of wind or a mini volcano – a beautiful and powerful force of nature. Lately, though, she has been tired more often, unable to walk a full block without resting, her lips and fingers turning blue. A treadmill test showed Johanna’s oxygen saturation level dipping down to 50%. I am sad to see her so tired, and amazed that she is as active as she is, given how low her blood oxygen level can get.
In less than a month, Johanna will undergo a catheterization procedure that we hope will help increase her energy. Johanna is scared. And my prayers have begun. I tell everyone I can think of about Johanna’s upcoming procedure to increase the good thoughts and good wishes around her. I say some formal prayers, but it hurts to think about it too much, about risks and possibilities. More often my prayers are informal, in moments when Johanna explains something to me about her stuffed animals, or when she exults over her spelling of a word or a passage she has read in a book. I think of being given the opportunity to get to know this little soul, how she has touched the lives of me, my husband, her big sister, and so many others. I smile at her shining eyes, hold her in my arms and in my heart and become a prayer of thanks and request. “Thank you, God! And please….”