The Beginning of our Journey

So the story begins whens I am 23 weeks pregnant and I go in for a routine ultrasound. I am having twins so they have been taking extra precautions seeing me and observing the babies every two weeks. Two weeks ago while I was there the ultrasound tech told us that she was not able to get a clear visual of Mia's heart for the past few weeks and she wanted me to be evaluated by a maternal-fetal medicine doctor. According to her and my doctor we would rather be safe than sorry. So without trying to be upset, I calmly walked next door to the doctors office where my Mom works and burst into tears. I just could not get past the part where there actually could be something wrong with one of my babies that I had asked God for so long to give us, which was a battle in itself. The maternal-fetal medicine doctor had agreed to fit us in that day so that I would not have to go home and wonder what if. On this day I forget to mention that my husband is at home with our 2 year old who is sick and needs to go to the pediatrician. With me being alone my mom says that she is going to take the rest of the day off and come with me so that I do not have to be alone. Well thank God because I do not know what I would have done had she not been with me! My appointment was supposed to be for 1:00pm. Well it was one of those hurry up and wait situations...you know the ones that you are like watching paint dry. Although, I felt so guilty to complain after they had been willing to fit me into their busy schedules. We finally went in at about 3:30pm and had a very extensive ultrasound that was performed by the tech and then the doctor. After it was all over he said four words that have made a huge imprint in my brain. Hypoplastic Left Heart Syndrome. Hysterically trying to pay attention all that I heard was fatal, death, termination, non life compatability. By the time I left the office I had no idea which way was up or down. You try so very hard to make sense of the situation or that there must be some kind of mistake. I still had to go home and explain this to my husband that was home all day with a sick baby and I really could not answer any of his questions because the specialist could not even answer mine. I called the pediatric cardiologist as soon as I walked in to beg them to see us ASAP. I was sure with all of this stress I would never be able to make it. He agreed to see us on Friday of that week and here we were on Monday. I must admit it was so very hard to absorb and I barely pulled myself out of the bed. So lets get to Friday....Here we are bright and early at Children's Hospital New Orleans with my supportive Mother once again in tow. Hoping to get better results. My husband had yet to have the days I have had this week.....once again I say yet. After the long extensive fetal echo, the doctor called us to his office and explained to us that he "thought" Mia was going to have HLHS. So with all of my medical background and all of the hours and hours I have spent on the internet for the past four days, I begin with a list of questions he CANNOT answer. I was so discouraged. I felt that I was trapped and could not make a move. I needed to know and NOW. I went home and researched again for hours and hours. I prayed to God and asked him if he wanted me to save her to guide me and help me find where we needed to be. On facebook, which has become my new life I admit I began meeting several families that have children with HLHS. These parents are such positive people and I have so much to learn from them. After speaking with several of them for a few days we realized the Children's Hospital of Philadelphia was the right place for us. We are taking the 20 hour journey next week. My appointment is on February 19, 2010. We hope that we can get some of the answers that we have been looking for for over 3 weeks now. I have not doubt in my mind that we will have that problem. This facility prides themselves on the survival rates of their patients with HLHS. We did have a second visit at the Children's Hospital here in New Orleans before making this drastic decision. Although they have had successful outcomes for children with HLHS, they only do about 8-10 surgeries a year whereas CHOP does about 100. Sorry my post is so long but i wanted to make sure you had all the demographics of what this was going to be about ahead of time. I will continue to post information up to date and hopefully it will be to the point now that I can talk one day at a time. Please keep our family in your prayers as we are hoping for a miracle. Which I do believe can happen. After all the saints did win the superbowl..haha! We love all of you and thank you for your Support.