Twenty-one years ago today was... Amazing.
I was going into the hospital to be induced, and the night before I'd gone into the baby's room to pick out an outfit- something cute to bring her home in. Except that... I didn't think I was going to be bringing her home. I held up one outfit after another, unable to shake the feeling that had been with me for months. Something was not right. This baby was not going to come home with me in any of the cotton sleepers I was trying to select. I thought of leaving them all home. But what if I was wrong? What would I tell the nurses and doctors if I had nothing for her to wear? I chose something and shoved it in my bag. Maybe I was wrong. Maybe everything would be just fine.
One long night and about 5 hours of labor later, baby Elizabeth was born. She was beautiful and she cried with healthy lungs and I kept saying "Is she all right?" "Is she ok?" over and over as they washed her and dried her and handed her to me.
I held her and looked at her. She was here! She was--
Someone took her from me, saying she was too blue and needed to be suctioned. But it took too long, and suddenly there were people everywhere. Doctors, more doctors, and they were calling for help, and they took my beautiful baby and ran out of the room. All of them. And I lay there on the bed. Alone in the delivery room. And waited. And wondered what was happening.
I reached for the bedside phone and called my mom. I told her the baby was born, but during our call my o.b. came back in the room. He said "Something is wrong with her heart. I think it might be transposition of the great vessels, but I'm not sure. They've called for a helicopter. I'll send someone to get you." And then he was gone. I stared at the door. At the empty room. Hadn't I told him something was wrong with her heart? Hadn't I asked him to check? He'd said everything was fine. That all mothers are nervous about their baby being healthy. I thought of the cotton sleeper in my bag.
My mom and I cried together. And after I hung up I waited. And waited. I finally got up out of bed and made my way into the hall. Down the hall. Holding the wall for support. Because if my baby was going to be flown out on a helicopter, I was going to see her before she left.
A nurse saw me making my way down the hall and gasped, "What are you DOING?!" She grabbed a wheelchair and we went to find Elizabeth.
Elizabeth was in the middle of a room, lying on a flat surface with doctors around her. I watched them work. Our pediatrician was there and said he was putting in an arterial line through her umbilical cord. They'd taken x-rays and said they were pretty sure it was transposition of the great vessels, but they wouldn't know for sure until she got to Primary Children's. I had no idea what they were talking about. A helicopter team arrived and they began loading equipment and getting my tiny newborn ready for her first ride anywhere. I stopped a team member and asked what their training was. He told me. I asked if they would take good care of her and he assured me they would. And then they were gone.
I lay in my hospital bed and cried and tried not to listen to the squeaking of little nursery beds being wheeled down the halls to their mothers. My phone rang and it was a heart surgeon from Primary Children's. She told me it was definitely transposition of the great vessels and that they had to do surgery immediately if there was any chance of saving my baby's life. Would I give her permission over the phone- a verbal signature- for them to do the surgery? She explained that they would go in with a catheter and make a hole in her heart between the right and left sides so a little bit of oxygenated blood could get to her body. That was about all I understood. She was hurrying, wanting me to understand but also wanting to know right away if she could do the surgery. I gave her permission, then repeated the same thing on the phone to two more people, so there were 3 witnesses that I gave permission. They said they would call when the surgery was done. I think it took forever.
The next day I was released from the hospital and Mike drove me directly to Primary Children's Medical Center (PCMC). It was the old PCMC downtown in a crumbling brick building with yellowed walls. I found my baby in a tiny bassinet with a breathing tube and IVs and not a stitch of clothing whatsoever. The nurses explained that they were giving her a medication that made her skin hurt if it was touched- thus the lack of clothing. I reached out a hand to her fingers and was told "no." Even my touch would cause her pain, and that would increase the stress on her heart. I could talk to her, sing to her, sit with her, but not touch her. At all.
The other mothers came over to meet me. The room was not very big and there were tiny bassinets and rocking chairs lining the walls. Someone asked where I lived and I gave them my address. They all stared at me with blank looks. Then one mom said, "Do you mean here? In Salt Lake?" I nodded and they all proceeded to tell me where they were from. Wyoming, Idaho, Arizona, Nevada... I was shocked. "Where do you sleep?" "Here in the rocking chairs." "Don't they have beds for you?" "Only for the most critical patients in the hospital. We're glad they are not for us."
I told the nurse I was amazed at how dark-skinned Elizabeth was. She looked Native American. The nurse said, "She's actually very fair-skinned. It's just that she's blue from lack of oxygen." I stared and stared at my tiny baby, wishing I could feel her fingers wrap around my own.
I went home that night to sleep in my bed and to comfort my little Rachel who wanted to know when her new sister was coming home. And I thought of all those other moms sleeping in their rocking chairs beside their tiny newborns.
The following Monday PCMC was moving to the new hospital up on the mountain beside the U of U Hospital, and Elizabeth was scheduled to be the first patient moved into the new facility. We were waiting for her to be strong enough to live through the open-heart reconstructive surgery she needed. We'd been told she might be ready when she was about a week old. But she was still not breathing on her own, a sign that she was too weak for the major surgery. I signed release papers for her to be photographed for newspapers as the first patient in the new hospital and prayed for her to take a breath on her own.
On Sunday morning we went to see Elizabeth before church and-- the breathing tube was gone! The doctors said she had begun breathing on her own that morning, taking breaths when the machine was not pumping air into her lungs. I could hardly believe it. I still could not touch her, but I felt like my spirit was holding her, hugging her to me, cheering for her little tiny breaths.
When we walked into church, a 12 year old girl named Angela came to talk to me. "How is Elizabeth doing?" I told her the amazing news that she was breathing on her own! Angela smiled and said, "I knew she would get better today. I'm fasting for her today." I cried.
Surgery was scheduled for Elizabeth's 7th day of life. We were there early in the morning, waiting for them to come take her to the ER. And waiting. And waiting. And finally a doctor came and said they could not do the surgery because there was a problem with the air conditioning system in the brand new OR. I couldn't believe they would postpone a baby's surgery because of something as trivial as air conditioning, and said so.
It was then that I got a full understanding of exactly what they were going to do to my daughter. In order to rebuild her heart, they had to put her on bypass, meaning the blood would bypass her heart and be pumped by an artificial pump during surgery. But, the tiny capillaries that feed the heart's main vessels can not be sewn back together if blood is flowing at all. So for part of the surgery, they would turn the bypass off and let Elizabeth "die," no blood being pumped through her tiny body at all, so they could see what they were doing. In order to be able to revive her after this, they would need the room to be very cold, and her body would be packed in ice for the surgery.
Oh.
They flew in engineers from Minnesota to fix the cooling system of the OR. But if they didn't have it fixed in 2 days, the doctors said they would fly Elizabeth to Boston, to the place this brand-new surgery had first been performed just a few years earlier.
Two days later, on Friday morning, the air conditioning was fixed and Elizabeth had her seven-hour open heart surgery. That night the hospital staff offered me one of the beds for parents in the hospital.
She was in the post-op ICU. A tiny person nearly lost in the dizzying wall of tubes and monitors and wires. She had several nurses dedicated only to her. The surgeon had videos of her monitors linked to his house so he could go home and still see how she was doing. There was an area the size of a large room filled with equipment connected to her tiny self.
A nurse from another patient walked by and looked at her. "Is this Doctor X's arterial switch?" Someone said yes. The nurse looked at Elizabeth for a moment and then said, "Huh. He's getting better at his switches."
(I am so ashamed that I cannot remember her surgeon's name. Sometimes I can. Right now it's not coming to me.)
Two weeks later Elizabeth came home for the first time. She was only home for a day before she had to go back in for heart failure, but she came home again for a bit longer, and then for a bit longer, until she was off oxygen, recovered from heart failure and doing well. She managed to stay home a whole month- from 3 months old to 4 months old- and we decided it was all right to leave her for about an hour with a babysitter- a girl we trusted from church. When we got home the babysitter had shaken her and dropped her on the kitchen floor and that evening Elizabeth had brain surgery because of hemorrhaging. We were told she would probably never learn to read or write and that she may never learn to speak.
********** ********** ********** ********** **********
They were wrong. Elizabeth laughed and talked at early ages. She was not behind in anything. I came out of the bathroom one day to find she'd completed a 30 piece puzzle on the floor while I was in the shower. She was not quite 3 at the time. She loved books and learned to read early. Sometimes I found myself wondering what she would have been like without the brain surgery! But most of all, Elizabeth was kind. She loved everyone and had the tender heart of a peacemaker.
She was also afraid of some things. Like worms-- gummy or real-- and slippery slides. Yet she had a bravado about her little blond, pig-tailed self that was wonderful to see. I brought home gummy worms for the girls one day and Rachel ate hers and asked she could eat Elizabeth's. Elizabeth was sitting at the table on eye-level with the worms. "No," she said. "I'm going to eat them. Just not yet." I smiled and went to fold laundry. I came back almost an our later and there was Elizabeth, still eye-level with the worms. She finally let Rachel eat them.
Elizabeth would sit at the top of slippery slides for forever, staring down the slide as the kids behind her shouted, "Hurry up!" It was after one of these playground days that she told me, "You don't have to call me Elizabeth any more. You can just call me Brave Girl."
And she WAS brave! She overcame her fear of worms and slippery slides. She became Rachel's protector, going with her to ask for more napkins at McDonald's, going before Rachel into the dark bedroom, making Rachel's phone calls when Rachel was too shy, and all-around proving she was Brave Girl.
When she was four, she was back in the hospital with Cat Scratch Fever. We didn't know what she had- it took weeks to figure it out- and we were living in Saudi Arabia at the time. The CDC flew a doctor to Utah to examine Elizabeth, since everyone was afraid she might have brought some strange, new disease into the US. I was pregnant with Bethany at the time and kept crying about everything.
Elizabeth's IV blew in her arm and they moved it to her left had- a much more sensitive spot. She smiled after the IV was in and said, "The good thing about having my IV in my left hand is, I can still color!" The next day, on her way to some testing, her nurse accidentally ran over her IV with the wheelchair and pulled it out. They took her back to her room and put the IV in her right hand. Elizabeth stared at her crayons as they put in the IV. After it was in, Elizabeth looked at it for a moment. Then she said, "The good thing about having my IV in my right hand is... I don't have to taste the yucky medicine!" I burst into tears just as the doctor flown in from the CDC walked into the room to meet us. After several attempts to talk to me, during which time I kept catching my breath, only to begin sobbing again, he finally said, "Why don't I come back at a better time."
When he was gone, Elizabeth comforted me.
She grew tall and graceful and even more kind. Her medical trials continued. As she said one day a couple of years ago, "I must have signed up for the Medical Adventure Life." She played with her doll house and asked if we could get a wheel chair for the doll family. She turned their shed into the hospital and the doll children spent a lot of time having surgery and visiting the cardiologist. Elizabeth said she wanted to be a cardiologist or surgeon when she grew up.
And she told stories. Laugh-out-loud, side splitting stories, touching stories, silly stories, and thoughtful stories. On the way home from the dentist one day she told us, Bill Cosby-style, The Truth About the Dentist. I laughed so hard I had to pull over on the side of the road. When she got older, she began writing her stories down.
And she drew pictures. Amazing, pictures. I wish that I had framed several of them. She shows people in relationships in her pictures, often with rain. Her skill with a pencil or paintbrush is as great as her skill with words.
And now she is twenty-one! Brave Girl, lovely as Cinderella, a dreamer making her dreams come true, an incredibly hard worker, creative in everything she does, with a heart as kind as anyone who has ever walked the earth. I still wonder, as I did so many times when she was little, how I could be the mother of someone as amazing as she is.
Happy Birthday Elizabeth. I love you.
=)
