Our three days of semi-blissful (it’s hard to maintain bliss when you’re sore and tired and you struggle to get your baby to nurse) new-parenthood shattered into pieces on February 29, 2000. A home-care nurse unwrapped her portable baby scale, laid our naked girl on it, and frowned.
“What was her birth weight?” she asked me.
I handed her the discharge sheet. “Seven pounds, eleven ounces,” I said.
She punched some numbers into her calculator. “She has lost too much weight.”
She pressed her finger on the center of Elli’s chest, then picked it up and looked for a second. She repeated this as she slowly worked her way down Elli’s sternum.
“She has jaundice and it is pretty severe. See how her skin blanches yellow when you press it? Look at her skin on her legs. It blanches white. We don’t like to see yellow so far down her chest. You need to have her seen by a doctor today.”
I stammered. “We haven’t picked out a pediatrician yet. She wasn’t due for two more weeks. Who should we take her to?”
She looked through our list of in-network doctors, circling three or four names. “These are all excellent doctors, but this one is the best.” She drew a star by a name. “But you have to get her seen today, whether he can see you or not.”
After she left, I called the name she starred. He was taking new patients, but couldn’t see us today. I called my family practitioner’s office and made an appointment for that afternoon.
As we drove across town, I felt the crazy crying approaching like a wave in the sea. “It’s the baby blues, don’t panic, it’s the baby blues,” I told myself.
My doctor weighed Elli, pressed on her skin the same way the nurse had, then listened to her chest intently. “Something is up,” she told us. “She’s losing too much weight, and her jaundice is severe and needs treatment. The best way to get answers is to take her to Children’s.” She must have read the rebellion in my face because she continued, “I’ll call and tell them you’re coming.”
“We don’t know how to get there!” I complained. The last place I wanted to go three days postpartum was a germ-laden emergency room.
We dutifully trudged out and turned our car south to the hospital instead of north to home. After wandering around town, calling the hospital, and finally finding someone who could figure out where we were and how to get us to the emergency room, we finally walked in, me vowing to never return again.
We prepared to wait for hours, but before we’d gotten settled, a nurse called Elli’s name and took us to a room. Four hours, fifteen needle sticks, an x-ray, an umbilical central line, and an echo-cardiogram later, we found ourselves in a private consultation room watching a cardiologist draw her best guess at Elli’s heart anatomy. We heard the words “heart transplant” and “heart surgery” and “transplant list.” I met my first hospital-grade breast pump, and my husband and I attained a new level of intimacy as he sat with me while I milked myself. We left her in the NICU with strangers and walked out of the hospital carrying an empty car seat.
Today is only the third Leap Day since Elli was born. On each of the previous two, I mourned the loss of our healthy typical child. I remembered the double-tragedy of her diagnosis on Leap Day and her brush with death on March 1 during a sudden and extended cardiac arrest. It was a little death, the worst days we’d yet experienced.
This year is different. I’m sad, yes. I’m grieving many things. But this day is no longer the anniversary of the worst day we’ve faced. I can’t watch her flail and hear her grunt and wonder “what if” any more. What if we had found her heart defect before we even took her home? Would the outcome have been different? What if we hadn’t taken her to the doctor or to the hospital? How would I be different if she had died in her sleep at 3 days old instead of at 8 years old?
Today, I remember what the doctor told us in that private consultation room. “If you hadn’t brought her here tonight, she would have died.” I count the 8 years and 8 months she spent with us, and I thank God that we didn’t lose a baby on February 29, 2000.
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On Wednesdays, I host the Life:Unmasked link-up, where we write naked, sharing the real, imperfect life we’re living. If you’ve written a bare-all post in the last week, or if you do in the next week, drop the direct link to your post into the linky below, and then visit at least 2 other writers and let them know you appreciate their vulnerability. Let’s try something new next week. Let’s all write on the prompt my biggest regret.
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Thank you for sharing this story, Joy. I pray that God continues to be near to you as you grieve the loss of your daughter.
Hilary recently posted..Dear Hilary, Love, Hilary: The Tuning Fork
I’m sorry for your loss, but praise Him for bringing you through the trial. I was the heart patient growing up, and I’ve often thought that my Mom was the real hero through my open heart surgery.
God bless moms of heart patients everywhere.
~Brenda recently posted..Taste And See
Oh, Joy. Thank you for sharing this hard story, the one that led to 8 years and 8 months with your beautiful girl. The longer I live, the more I realize that these two questions do not have answers: “Why?” and “What if…?” What you lived is what you lived – part of it great gift, part of it hard, difficult struggle. This reflection is beautiful and sad and perfect.
Diana Trautwein recently posted..A Lenten Journey: Climbing to the Cross – Day SEVEN
Dear friend, I’m so sorry for this pain that you’ve had to endure. Thank you for opening yourself up to us here. You are a treasure & you are treasured.
Alise recently posted..Stuff I’ve Been Reading
Oh Joy … some day we’ll sit and talk and share stories … yours of eight years, mine of eight days. I too have said good-bye far too soon to a daughter with a heart condition. This post, though, is absolutely a beautiful picture of healing and grace. Thank you for sharing.
Wow, God’s given you something beautiful to hold onto in the midst of the most difficult of experiences. Tears welled up in my eyes as I read this. I’m sorry for your loss. I’m happy that you’ve found some solace. Thank you for sharing this powerful story, Joy.
I’m sorry to hear that. I know God has his purpose. At least you been there for her for 8 years. You made her fell your love as her parents. I pray for her and your family. I hope you can recover soon from grieving.
beautydeleon recently posted..Motivation To Lose Weight
sometimes there are only tears to express the soul. Mine are running down my face.
“The LORD is close to the brokenhearted, and saves those who are crushed in spirit.”
Psalm 34:18
Kamille @ Redeeming the Table recently posted..Lent Allows for God Sized Dreams: What are yours?
Joy – I was a stay at home dad while going to seminary, so this is extremely difficult for me to read. Maybe more than some dads, these stories touch something deep inside me. I’m sorry for your pain, but glad that you can share it. Prayers for you today. Jake
Joy, this is a beautiful story of redemption even in pain. I’m so sorry for your loss, but encouraged to see the heart and soul behind these words.
Connie recently posted..Chocking and the Control “Tug of War”
Sorry to hear of your loss. I can’t imagine what you must have gone through, but I am glad that you are finding the strength to grow from your grief. Best wishes.
Oh Joy I am so glad you got these last 8 years.
I found you through blogher and so glad I did.
During my son’s first 24 hours, we heard the words “liver transplant” and there’s nothing like that to jolt you out of new mommy bliss.
Thank you, as always, for sharing your story….
I’m so to sorry hear that your going through this situation. My players are with you, just stay strong and keep the faith. Thanks for sharing your story!
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