History Lesson...

I started this blog just for me. As an outlet for my feelings, good and bad ones. I don't show my emotions well in front of others and having hosting a pity party for myself on my son's site always feels bad. I feel guilty and ashamed about my feelings on his site. Mainly because, it's for him.  It's purpose is to update and allow people to see the miracle he is and how far he has come. I also use the site to help other families who might be going through the same medical craziness. My feelings just don't fit the "place of hope" his site is meant to be. But just in case someone does come across my blog and can't for the life of themselves figure out how we got here.
Here goes-
My husband and I met in college. We always wanted children, but our busy lives just never seemed ready.  We were at that point where all our friends were having children and pregnant. We went to visit our best friends over New's Year Eve and they put the "time to have baby drops" in my drink. We discovered we were pregnant in January.  I had mixed feelings about having a baby. Sometime I had always wanted to do, but I want to sky dive too and will probably never jump out of a perfectly good plane. I also knew, once he was on his way, there was no turning back. Things went great until about my 25th week when the blood pressure meds I was taking, just stopped working. We tried other drugs, they would work for awhile, then quit. As my body was feeling more and more stress from Little C, we began to realize time was not on our side. I went to the ER in my 28th week and was told to prepare for a long stay in bed. Looking back, what I wouldn't give now for a couple of weeks in bed! Ha! But on the 6th day of my 29th week, I developed HELLP Syndrome, It began around 4 pm. Severe HELLP Syndrome. It took a long time for the nursing staff to realize what was happening, but my husband was surfing the web trying to figure out why I was crashing so fast. It began with heartburn like symptoms. It quickly developed into terrible pain in my chest. I began having trouble breathing and began to come in and out of it. At around 2 am, a diagnosis was finally realized and steps began to stabilze me and get ready for an emergency C-Section. The only cure for HELLP Syndrome is to have a baby. Little C was born 10 weeks early at 8:33 am. I was completely under sedation when he entered this world. My beautiful little boy. He was transferred to another hospital as my hospital didn't keep 30 weekers.  I don't remember seeing him, but there were some pictures of our introduction.
Little C's Preemie Road-
Being a 30 weeker, Little C was a little small due to my blood pressure. He weighed 2.4 lbs. He was breathing on his own and doing very well. I would not be able to see him for over a week. Dad would go back and forth with pictures. Little C developed an infection in his second week, but it was treated and he was fine.  We began to talk about going home. That was a Wednesday. At 2am Thursday morning, I was called and told to come immediately and it might already be too late. Little C developed NEC, a very serious infection in his intestines. He was so sick, so sick. Too many details to bore you with. He ended up having 2 surgeries and lost a total of 21cm of small bowel. For the next 7 months, we spent everyday in the NICU working hard to get him better and get him home. We transferred him out of the NICU and went to 2 other hospitals before he would come home. He was only home for 2 weeks when he had to go back. There are lots of details missing here, but it's supposed to be a short history lesson! When he returned to the local Children's hospital, we began to have disagreements with the physicians there. After a short time, we made the decision that his cure was in another state and we transferred him 3000 miles away. After a brief time at our new hospital, a major medical error occured and to save his life, he was listed for a multi-organ transplant. About a year and a half ago, my son received his gift of life- 5 new organs which cured our old problems. But transplant is no cure, it is trading one set of issues for another. We spent 7 months after transplant living away from home in an ICU. We got home right before Halloween 2008. Since we have been home, there have been lots of ups and downs. In Jan 09, my husband was "laid off" from his finance job. They blamed the economy, I know it was because we had a sick child. After everything we had already survived, now we must figure out our next move. Losing this position sent my husband in a downward spiral. He has had a very hard time understanding why this is happening to us and the best way to deal with it. It has now been a year and how we are surviving, only God knows. Every month, some crazy thing happens and we have money appear to pay the bills. I think that about catches up to us now. -Still fighting for health for our two year old, still looking for a position for my husband, still trying to find our place in our own lives. Oh, did I mention I had to close my own personal business too. My mom had been running it, but it just got to be too much. Hence here I am, searching to recover from all I been chosen to endure. The truth is every second is worth it for his smile. This really was supposed to be short lesson!