Olivia's Story

When Brian and I decided to try and get pregnant the Lord blessed us right away with Olivia. We were so excited about the pregnancy and couldn’t wait to meet her. All of the ultrasounds and tests pointed to a healthy baby girl. Olivia was born April 3, 2009 (by induction) 6 days after her due date. After a relatively normal labor, we met 6lb. 1oz. Olivia and she was beautiful! She was whisked away right after birth to clear aspirated meconium, but returned to us soon thereafter to spend some time with her. She did not breastfeed in the first several hours, but we were assured that was not uncommon for babies. After a very stressful second day on no successful breastfeeding attempts, that night Olivia was taken to the intensive care at the hospital I delivered her in for failure to keep her own temperature and lack of nutrition. It was then that she was given her first NG tube, a feeding tube that goes through the nose and into the stomach. After another day went by and she did not seem to be doing any better, and now was very groggy and sleeping virtually all day (more than a usual newborn), she was transferred to Children’s Mercy Hospital for an MRI. They expected nothing unusual and thought after another week or so she would come home.
Our first experience at this new hospital was stressful and intense. Once we finally got back to see her, though we learned we would be a big part of her care in the hospital so she could get to know us. Meanwhile, the MRI results came back as expected-- her brain looked perfectly fine, but Olivia did not seem to get better and was still not eating by mouth. After a swallow steady several days later we learned that trying to feed her by  mouth with cause her to aspirate and turn blue--something we hoped we would never have to see again. It was then the decision was made to go ahead give her a feeding tube so we could take her home. It was not expected that there were would be any other health issues for her after lots of tests and examinations.
After one surgery and one month in the hospital Olivia came home. At first we were very nervous about her feeding tube, but it has since become a very normal part of our lives. The first three months were a joy-- spending time with her and watch her do normal baby things. The third month of life brought her first pneumonia. After 10 days in the hospital we came home with oxygen and not too long after that Brian and I noticed a stagnation in her development. A few months later her pulmonologist suggested we see a cardiologist, just in case. I remember taking Livi to that appointment by myself, since, I figured, it was just to cover our bases. We found out that day Olivia had 2 different congenital heart defects that she would need surgery to correct. While we were still reeling from that news, the next month Olivia started the most devastating health problems of all--the seizures.
The night they started we were at a friend’s house having dinner. Brian was holding Livi and suddenly her head fell and hit his shoulder, like she had suddenly fallen asleep. It was curious the first time, but when she did it again, we were very concerned and called the dr. right away. That was November 2009. That winter was the worst few months of our lives. Livi continued to only seize and sleep. We tried several medications, none which made the seizures go away. We had to sit and watch as 80 times a day our daughter slipped in and out of consciousness and her brain continued to be damaged and we could nothing but sit and cry and console her. 
January brought a new drug, and some new life to Olivia. She had lost all of her previous physical, and many mental capabilities, but we now were seeing her awake often and instead of 80 seizures, seeing about half of that daily. It was then that we had a meeting with all of her doctors. She needed the heart surgery, but everyone was concerned that if we put her through such a rigorous surgery she would not be able to recover. We opted to hope for continued progression and revisit the heart surgery after the sick months. Finally, in July of 2010 Olivia had open heart surgery to fix the 2 congenital heart defects, though she is still on medication for continued pulmonary hypertension.
Since then, our world has been full of hospital visits for upper respiratory infections, hand-fulls of different kinds of therapy and VERY slow progression for Olivia. She is stronger and bigger and regaining a few of her milestones slowly but surely. We do not know what the outcome is for Olivia-- and that used to plague us. There is currently not an overarching diagnosis for Olivia’s health issues. Now, we are happy to not have a label for her or a rigid prognosis. Olivia determines her own outcomes, and more specifically, we believe God accomplishes His own outcomes through her life.
More recently, January 2012, we took Olivia to the hospital for a routine cold virus. A week later she was fighting for her life. We almost lost her to a particularly nasty virus. That resulted in several months in the hospital and a tracheostomy. We are in awe of her strength and feel blessed that the Lord saw fit to leave her with us, for at least a while longer. We are delighted to walk through this life with Olivia and continue to learn so much about how to love each other.