The beginning

The purpose of this site is to record my thoughts. I have lots of thoughts. Some happy, some sad. I hope to better express myself through my blogs than I do in person. Words don't come to me very quickly these days. We think in emotions, and emotions are not words. So it takes me awhile to process my thoughts. Often times I want to tell people how I'm feeling but I don't always know how to. So I'm hoping this blog can fill in some of the gaps my silence creates. I also hope by sharing our story it may help someone else.

Here it is, how it all started...I became pregnant in July of 2007. It had been 14 months hoping for a baby so it was extreme joy when we discovered I was finally pregnant. Other than being extremely nauseous in the first trimester and in the hospital once for dehydration I had no thoughts that anything was wrong with my baby. In fact, I was so confident of it I had decided not to do the triple screen test. Then at 20 weeks pregnant we had a routine ultrasound. Our biggest concern going into the ultrasound was that our baby would not be in a position to find out it's gender. I still never really thought anything was wrong. We did find out it is a girl! We already had her name picked out...Cayman Cindy. The next day the doctor's office called telling us the report from the ultrasound showed our baby has one kidney. We met with the doctor the next day and learned there was more to the devestating report. She also has Hydrocephalus, an accumulation of extra fluid in her head compressing her brain as well as something wrong with her stomach. My visits with my OBGYN instantly ended as we were transfered to a specialist in the high risk pregnancy department. From then on everything has been so different. My dream world was crushed. The doctor ordered blood work to be done to test for any of the dangerous infections that can cause birth defects. It all came back negative. If things weren't stressful enough, my husband was offered a job back near our hometown (2 1/2 hours from where we were living), and we decided to accept since it would be helpful to have our families close during this time. So at 25 weeks pregnant we put our house up for sale, moved in with my husband's parents, and had my care transferred to the nearest specialist which is at U of M in Ann Arbor, Michigan. Requiring a level III pediatric facility usually means having to travel unless you live in a major city. So for us Ann Arbor is about a 2 hour drive. Our first visit there turned up very grim news. Cayman's fluid in her head increased a lot without her head growing bigger (meaning her brain was either not developing or it was severly compressed), a stomach condition called Duodenal Atresia which would need surgery after she's born, and a heart defect. All that together was concerning for a reduced likelihood of survival post-natally. At that moment I prepared for the death of our daughter. If she would be so severely compromised what was the point of life in the first place. I didn't know what made me cry harder...thinking she would die or thinking she wouldn't have quality of life. It was bad vs. worse but yet I didn't know which one was worse. I cried everyday, all day. The day before we met with the Cardiologist, I told Cayman "Your Mommy and Daddy are so proud of you. You have fought so hard to be alive with all the things going wrong in your precious body. If you're tired and you want to go home to Heaven we'll be ok. We love you so much and we'll still be so proud of our little girl". It is still painful to think of that time when I said that to Cayman. But after I said it, the room became so peaceful and I stopped crying. My little girl wants to live!! I could feel that!! I can't explain it, it was just something I could feel. So I told her "Your Mommy and Daddy will fight with you until you tell us you've had enough". The next day we met with the Cardiologist and received the breath-taking news that her heart was functioning beautifully! Suddenly Cayman's future seemed brighter! Perhaps our prayers were being answered! We decided to do an amniocentesis at 29 weeks. We were seeking answers to her birth defects. The Genetic Counselor called one afternoon saying the chromosome analysis was back and it produced normal. I called Mike at work to give him the news. His response was "this is good news right?" I knew exactly what he meant. It was good to know her chromosomes were normal, but yet it still didn't help us know what we are dealing with. It didn't seem to make any sense that there could be several birth defects without any known reason. Another test from the amnio was done called a Microarray. It analyzes the information contained within the genes. It too produced normal results. Even though we did celebrate the news it still felt very disturbing to have so much unknown to us. I am now 33 weeks pregnant. My baby girl's head measures the size of a full term baby. Because of this a planned C-section will be done. I am so excited to hold her. If Cayman's story of her life has to be like this, I would choose to find out like we have, rather than go through the whole pregnancy and find out at her birth. Sure, I have been robbed of some of the joys of pregnancy. Most of my pregnancy has been filled with stress and fear. But having the chance to deal with all this before she is born has helped me be ready to bond with my little girl and be there for her when she needs me the most...and that is the most important thing to me. When I was 12 years old I was in an auto accident that put me in the hospital for a month and after that a lengthy recovery. I feel, having that experience, will make me a better mom for Cayman. I don't freak out by hospital stuff easily, I can understand and am more knowledgeable because of my experience. And even having compromised leg muscle strength, which has prevented me from doing some things in life, I am very much content, peaceful, and happy. And I think that if Cayman is compromised I can better help her to be content, peaceful, and happy in life too because it's a path I know. I love my little girl!! Soon we will get to hold her!! What a beautiful day that will be!

Wow, I didn't realize once I started telling our story it would just keep coming. I am sure future postings won't be so long.