Subject: Case, Olivia

Olivia’s Story
By Sarah Case (mom)



I was a traveling nurse living in Arizona and is where I met my husband. My entire family resides in Pennsylvania. My husband’s family where scattered over the country. I was ecstatic when I found out I was pregnant. One of my dreams were coming true. We didn’t find out what we were having because I wanted to be surprised. Deep down inside I wanted a girl because there was no grand-daughters on either side of our family, but either which way it did not really matter.
Besides being extremely nauseous and “green” weeks 7-10, my pregnancy was uneventful. I enjoyed being pregnant so much that I felt like I could have been pregnant forever. My daughter Olivia Catherine was born on May 31, 2010. I was admitted into the hospital around 10:00 am and she was born at 4:13pm that afternoon. After two pushes she popped out and let out one big scream. I had NICU nurses at my bedside to due meconium in the fluid, and they took her to the other side of the room before I could even get a good look at her. I don’t recall it bothering me too much because I knew I would get her back in a few minutes, however, that was not the case.
One big scream was all that came out of her. After a few minutes I started to wonder why she was not crying. The NICU nurses placed a pulse oximetry on her and it read in the 40’s%. Being a nurse myself, I knew that was not a good sign. The words out of my mouth were “ that can’t be right.?” No response. They immediately took her away to the NICU as my husband accompanied.
I just sat in my bed in shock and disbelief. Waiting for my husband to come back with her, crazy thoughts were going through my head. My husband returned and instead of Olivia with him, it was the neonatologist. He came to tell me that they had to intubate Olivia because she was not breathing right and obtained a chest X-ray which had showed her intestines up in her chest cavity, and no sign of a left lung. He proceeded to tell me this defect was called a congenital diaphragmatic hernia and her chances of survival were 50%. The are planning to fly her to the Children’s Hospital next town over.
My heart sank into my stomach. I only heard muffles coming out of the neonatologists mouth from then on out. My dreams were being shattered. The happy tears and joys were replaced with fear, sadness, anxiety and sad sad tears. Gathering myself together, I had to pick up the phone and call my family. I had no idea what to say, or how to say it. Which comes first, “I had a girl and she is sick” or “my baby could die and oh by the way, it’s a girl everyone has been waiting for?”. Wiping the tears from face, I picked up the phone and called home. My mom answered and said in an exciting voice, “Well, what is it?” My response was “It’s a girl.” I guess my mom heard the fear in my voice and asked me what was wrong. I told her that Olivia was very sick and that she had a breathing tube in her mouth and had only a 50% chance of survival and I didn’t know what to do. I hung up the phone and the nurse came in and asked me if I wanted to go see her before she left for the Children’s Hospital
My beautiful tiny baby girl, lying there so limp, with tubes and wires and everything else coming out of every orifice of her body. I put my finger into her little hand and she held on to it. I had a few minutes to talk to her, get our first and maybe our last picture as a family before she was whisked way.
I was discharged from the hospital a few hours later that night, and arrived at the Children’s Hospital. Walking into the NICU, my body was so numb. I was on autopilot. Why was I here? What is congenital diaphragmatic hernia? Is that MY daughter? Are they sure? As the doctor met us in front of Olivia’s incubator, he tried to explain what was happening and what the plan was. ECMO primed and ready. Olivia was on a special ventilator (called an oscillator). It gave her 180 breaths per minute. In addition to her CDH, she was born with two extra holes in her heart. Because of the combination of her heart and lung issues, she had what’s called pulmonary hypertension. Five days on the oscillator, four days on the regular ventilator, nitric oxide forever, echocardiograms everyday to every other day while she was there. As her guardian angle watched over her, she never needed ECMO. Her diaphragm was fixed on day three and was successful.
After one week, feeling like a lifetime for me, I was finally able to hold my precious peanut in my arms. A few days after that, I heard her cry. I was so grateful for those moments. It truly was a miracle for me. For the next few weeks, Olivia was weaning off medications, withdrawing from narcotics, and learning to eat. Finally, four weeks later, we took our Olivia home. It was my husband’s birthday.
Olivia is 2 ½ yrs. old now. After a few minor procedures (unrelated to CDH), occupational therapy and speech therapy, Olivia is a thriving, happy little girl who loves life. She is still a picky eater and probably will be forever. She is very independent, smart loves to dance and play, especially outside.
I still struggle with my experience. I cry if not everyday, I cry every other day. I cannot seem to get past the hurt and fear of heart-breaking experience. It still seems as if it was just yesterday. I cry for Olivia because of all she had to go through and overcome. A tiny little baby, weak in nature, but a soul so strong that she beat the odds. I thank God every single day for her. For keeping her here with us. She is such a joy in our lives. I will tell Olivia her story. She will know her fight for life, and how important and precious life really is. I will strive to teach her to be proud of herself and to tell her story to educate others. I do hope one of these days my tears and heartache will go away. I would like to close that chapter in my life. Not ever to forget, but to move forward.


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