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Olivia's Story
"I knew something was wrong when I lost consciousness at work, I was 8 weeks pregnant..."
Around thanksgiving of 2010, I had taken a pregnancy test both at home and in clinic and found out that I was indeed pregnant with my first child. The first couple months of my pregnancy were like any other day. I didn't have any morning sickness and felt no different than usual. By the middle of my seventh week I had spiked a fever of 104.2. I took myself to the ER 4 times within a week. Each time the doctor had come to the conclusion that I was dehydrated, given me IV fluids and sent me home. At the end of my eighth week of pregnancy I was working as a cashier and suddenly felt lightheaded. Within 10 minutes I had passed out on the floor and was being woken by paramedics putting me on a backboard. Yet again I was in the ER with a doctor telling me I had vertigo.
I began vomiting all the time, whether I had eaten or not. Within four months I had lost 60 lbs. I was constantly tired. My blood sugar plummeted, as did my blood pressure, my heart rate was very high, I had multiple episodes of break through bleeding and I continued to lose consciousness. Within 5 months time I had been in the ER over 25 times, 8 of them in an ambulance. I knew something was wrong, and doctors kept reassuring me that it was all in my head.
At 28 weeks pregnant I went to the ER for shortness of breath. I showed multiple episodes of tachycardia. I was immediately admitted to the cardiac unit of the hospital. I had ultrasounds done on my legs and heart, multiple x rays and non stress tests every four hours to watch the baby. On my third day in the hospital without a diagnosis they finally did an ultrasound on my daughter just to make sure she was alright. What the ultrasound showed was terrifying.
My baby's arms and legs were short of growth by two months and were uneven. Her abdomen was so full of fluid that she was measuring 41 weeks in circumference. Her brain had stopped growing on one side. Her heart was twice the size it was supposed to be and her blood pressure was through the roof because of it.
I was transferred from the cardiac unit to labor and delivery where they administered steroid shots to prepare my daughter's lungs in case I went into labor. The OB on call gave me a laundry list of possible causes and told me that in the morning I would be transferring to the University of Iowa Hospital and hour away so they could do more specialized testing.
The next day I met the fetal diagnosis team who took lots of blood and drew an amniocentesis to test for absolutely everything. Two weeks later my tests came back CMV positive. I had to continue to return to the specialists at the university once a week to monitor my daughter's progress. Things looked worse and worse every week. I had my labor stopped 4 times between 28 and 34 weeks gestation. After the last time she decided to stop trying and a c-section was scheduled for four days before my due date.
On July 18, 2011 Olivia Rose was born at 12:49pm 6lbs 5.1oz 18.5in long. I only got to see her for a brief moment while being stitched up and she was rushed to the NICU. My spinal block made me very sick, so I was not able to see her until the next day. She was able to breathe on her own for the first and second day of her life, but by the third day she had desaturated so much that she had to be placed on oxygen. Lots of blood was drawn, and many tests were done including a head and abdomen ultrasound and 2 MRIs.
Her abdominal ultrasound showed she still had fluid around her organs, called ascities, caused by abnormalities in her liver enzymes. Her head ultrasound showed cysts inside her brain and her MRIs showed that the virus had eaten the lining out of her brain. On day 8 of life her CMV test came back positive and we started her immediately on Ganciclovir. The nurses had to come administer a central catheter that went into her temporal atery straight into her heart. The treatment was administered every 12 hours. We were in Iowa City at the University hospital in the NICU for 3 weeks. We were then transferred closer to home and stayed in the NICU here for 4 more weeks of treatment.
Olivia is now 9 weeks old, and has no obvious symptoms other than her reflux which can be mild to severe depending on the day. Today is a severe day. It is a wait and see game from here, and the possibilities are endless. She has follow ups for hearing and vision, she also has physical therapy. She can't yet hold up her head and she only smiles once in a while, but we are working on it. She is my whole heart, and even though it's not what any one hopes for or expects with a first child she is perfect and I wouldn't change her for the world. She is the miracle baby no doctor thought would make it, and she is mine.
- Shared by her mother, Ashley