In honor of Heart Month and CHD Week next week,
I am reposting this entry to share with other families...
Having a child is life changing. Being able to create life is a miracle in itself. Imagine having a child with a life threatening illness/birth defect. You rethink every thought, decision, and experience you've ever had. Being told your newborn isn't breathing properly and will likely die is life altering. Like a movie, every moment of your pregnancy is replayed in your mind. Did you take too many Tylenol? Should you have had that one drink before you realized you were pregnant? Why? Why me? Why her? Why now? Those are the questions I asked myself over and over after giving birth to an amazingly beautiful baby girl, who was critically ill and being transported to a children's hospital two counties away from me on her birthday.
I went in early that morning for a scheduled c-section, with little worry about anything other than the pain of that awful needle that would be entering my back soon. My husband had brought himself a Mountain Dew on the way in and I sneaked a few sips while we were waiting for my room. I felt confident in my OB's abilities. I felt confident that I would be okay. This was my second pregnancy and my second c-section. I knew what to expect and I knew that as long as I had my new baby, I'd be okay.
Her birthday was May 29th, and it would end up being a hot, humid day. I didn't get to hold her or take pictures with her. While I was strapped to the operating table, they brought her in briefly to show me she was fine and then they whisked her back outside with her daddy by her side. I felt good. Everything was fine and she was fine. Daddy got a picture with her outside in the hallway and then the nurse took her back into the room adjacent to the operating room I was in. My OB worked on me for a while. We'd decided that two children was our limit and I was undergoing a tubal ligation.
Once back inside of my room, I was so excited to see her. I couldn't wait to hold her and take her picture so I could share it. My mother would be bringing her big sister to see her later that day, with her "I'm The Big Sis" t-shirt I'd bought for her to wear. The nurses kept telling us she was fine, she just needed some oxygen. It was normal, considering she was born a few weeks early and the medicine from the c-section could make some babies need extra help. Minutes turned into hours and I finally sent my husband downstairs to get lunch. There was no reason for him to wait around. Our baby was fine.
I should have taken more pictures. Her birthday was a special day. I barely remember seeing her before she was taken by ambulance to another hospital. A small framed, awkward hospital pediatrician came into my room. I didn't realize she would be the one to change my life. She asked me my name and age. I knew by her body language and tone of voice that something was wrong. I thought maybe she was mistaken as she told me of my sick newborn. She had me confused with someone else. There had to be another "Smith" in the same ward. Right? What does she mean, she's critically ill? She will not make it if she isn't moved to another hospital... What? I remember turning away from her and looking out my window and feeling the pain move through my body as her annoying voice kept pounding at my ears. It was like no pain I've ever felt before. My heart was literally falling out of my chest and onto the floor. That's how it felt.
How did this happen? This was "her" birthday. How is this possible? I cried and cried. I begged the doctor to please tell me it was a mistake. I asked for her to find my husband. She just stood there, glaring at me as if I had two heads. I'm not sure if she had never dealt with that type of situation before or if my reaction was what stunned her. I didn't care. A kind nurse had heard my crying and ran into my room to scolded the doctor for telling me such horrible news, while I was alone. The doctor left and the nurse called down to the cafeteria to locate my husband. He immediately thought I was in trouble. He ran back to my room to find me inconsolable. I couldn't speak. How could I tell him that his baby girl was gravely ill? Who wants that job? Thankfully, the nurse was able to explain what was going on in a kind, gentle way.
Hours went by, while the staff tried to locate an ambulance to transport my baby on her birthday to a hospital we'd never been to before. I was so distraught, as was my husband. I cried, he stood silent. They asked if we wanted to see her before she was moved and we said yes. It was brief, but it changed me. She was in what looked like a plastic box. An incubator. Her little body was hooked up to all kinds of battery charged devices. I couldn't see her very well, but I took a picture anyway. It was blurry and the flash reflected against the wall, creating a pretty crappy picture. We didn't have time to go back and do a redo. They were in a hurry. I never had a chance to hold her and tell her how sorry I was for ruining her birthday. It was my fault, I thought. I must have done something to deserve this.
I asked my husband to go be by her side. There was no reason for him to stay with me, when our baby was alone and in a strange place. He wanted to go and became my sole communication between my hospital room and hers. She was put through all kinds of tests and then we received the news that she was missing part of her heart. She'd been born with
Hypoplastic Right Heart Syndrome or HRHS. There were a few other issues with her
pulmonary valve and
tricuspid valve, but she'd need surgery immediately. What a way to spend your birthday. In a medically induced coma, in a strange place, and without a mother. I begged to leave my hospital, so I could be near her and my OB obliged me and sent me to the children's hospital for one night, so I could recover near her.
When I saw her again, she looked different. She was bandaged up, bloody, and hooked to even more machines than before. I felt the earth fall from under me, as reality hit me. It was hard looking at her in that state, but also a miracle to see her still hanging on. I was able to hold her soon after seeing her again. She seemed much smaller this time and even more beautiful than before, if that's possible. I mourned the loss of our first pictures together, her hospital picture, and having pictures of her with her big sister. I celebrated the miracle of life, strength, and the will to survive. She instinctively knew to fight and keep fighting. Her spirit was strong and she would show us time and time again that she was not giving up anytime soon.
My baby girl celebrates her 6th Birthday today. To date, she has undergone
three open heart surgeries, numerous
cardiac catheterizations, procedures, and tests. She's been hospitalized twice for seizures and has had dental surgery in the hospital. Just this past week, she came down with a viral infection that kept her from enjoying her birthday party and out of school for three days. I took her to the doctor twice and we sat in a procedure room all day on Tuesday, getting intravenous fluids to keep her out of the hospital. It was a miracle we didn't need to go to the hospital. Each day, we learn something new about her. Life would not be the same without that feisty, stubborn, quick witted, little pistol we call Sydnie. She changed our lives forever on May 29th. It was a true miracle. A birthday miracle.
Then and now....
We love you Sweet Pea!
