The Story...

  On Thanksgiving morning 2010, Sean and I found out that the Lord had blessed us with another baby.  We have been so excited ever since! On March 15, 2011 we found out that we were having a little girl. We already had her name picked out, Sadie Robin. Sadie after Sean's maternal grandmother and Robin after my maternal grandmother. Sadie is a name that I have always loved, so when I found out that was Sean's grandmother's name, my heart was set. Sean cried the minute he found out we were having a girl, and I was petrified! :o) What on earth was I going to do if she was as hard-headed as me?! But honestly, I couldn't wait either, I immediately began searching out little hippie dresses for my little lady.

          I had another ultrasound scheduled for March 25. During this ultrasound, the tech found some things that seemed alarming.  However he wasn't able to tell us what exactly it was and with it being a Friday afternoon, we would have to wait until Monday to find out. On Monday, my doctor wasn't in, but she called first thing Tuesday morning when she saw my ultrasound. She said there were several things that were going on, but she wasn't sure what was the cause. It was possibly Down's Syndrome, but she wasn't sure. She immediately put in a referral for a perinatologist in Roanoke. On Wednesday the specialist in Roanoke called and set up an appointment for first thing Thursday morning.

             There were so many things that the Lord did that day. Here are a few before the appointment ever started. First, that was Sean's only day off that week. Second, at such short notice couldn't find a babysitter...which sounds like bad news, but I left the house at 6am and didn't get home until 8pm. If we had a babysitter there is no way that I would have been able to get all the testing done in one day and the process would have been drawn out. As it was, a sweet and dear friend went with me while Sean stayed home with Isaiah. I was the first patient seen that day. All in all I was on a table having  ultrasounds for a total of about 5 hours. (Needless to say, my belly was sore the next day!) After the first ultrasound, the perinatologist came in and looked around some more. I was so thankful when she said, "I am going to be very honest with you, there are no secrets here." Honestly, that is exactly what I wanted and needed.  She continued to tell me that they did not think it to be Down's. Sadie had other things going on that may be much more severe. There was a space in the back of her brain that was slightly larger than it should have been. Her neck was much thicker than normal. Her stomach seemed to be two chambers rather than one and there was a possibility of a blockage to her stomach because she wasn't getting enough fluid. One of her kidneys was so full of cysts that you couldn't see it on the ultrasound and it was unable to function. Most alarming though was her heart. They couldn't find the arteries going to her brain or her stomach and they also couldn't find the dividing wall in the upper two chambers. They needed to do an amniocentesis to try and find the cause of all these things.

             After talking with a genetic counselor and a quick bite of lunch, I was taken in for the amnio (which was surprisingly quite painless). After the amnio we had about 2 hours before the next appointment. Thankfully, the waiting room was huge and had nice big comfy couches. We were able to hide behind a wall and lay down to rest for a bit. Our last appointment for the day was with a pediatric cardiologist.
There they did a thorough ultrasound of Sadie’s heart. They weren’t able to see everything they needed to, however they were able to see the arteries and dividing wall that the other ultrasounds didn’t show. He did find that Sadie has aortic stenosis which is a thickening of the aortic valve. This may need surgery or may not need any treatment depending on it’s severity at birth. They will be closely monitoring Sadie’s heart for the remainder of the pregnancy to determine exactly what is wrong and what she will need after she is born.

            The most important part of the day was the Lord. Sean and I had such a peace from the Lord from the very beginning. Even after the initial ultrasound the week prior, we were completely at peace. In fact, at first I expected to be upset and distraught, but instead I was flooded with peace. When we thought that we were looking at Down’s Syndrome, we felt honored. If the Lord created one of his children that needed extra care and love, we were honored that He would choose us to give that love and care. We had no desire to get an amniocentesis.  We were excited to have our daughter regardless of how the Lord created her…. And that is still how we feel.
            That day in Roanoke as my friend and I waited in the waiting room for the amniocentesis we prayed. I was so flooded with the peace of the Lord. I felt as though He was beckoning me to jump freely into His will without any fear. No fear of the journey and no fear of the outcome. No fear of being vulnerable. He is trustworthy. He doesn’t make mistakes and He never fails. All things are for my good and His glory. He truly means that. I don’t have to act strong, it is ok to hurt, He is the perfect Comforter. I am His. He is mine. He is my resting place, my hiding place, my strong tower, the firm foundation on which I stand. He is truly my all in all. I am free to be excited about being pregnant. I am free to joy in having a daughter. I don’t have to fear the thought of looking into her face and holding her. I am not setting myself up for disappointment. I walk, knowing the what-ifs, knowing the possibilities, and I can continue to praise the Lord that He has blessed me with this child. Even if we lose her, I can still be grateful to have a daughter named Sadie Robin. She is His. Regardless of how long she is in my care, she is always in His. Those times when I have cried out to the Lord and asked Him to let me hold her just once, He has assured me that she is in His hands, even now, and they are much stronger than mine.

          On Thursday April 7, we got a call from the doctor with the results of the amniocentesis. They found that Sadie has a very severe form of Turner's Syndrome. This means that she is completely missing one of her sex chromosomes.  There is a type of Turner's called Mosaic Turners which is a much milder form that what Sadie has. There is a link on the blog to a website if you want to learn more about Turner's. I won't go into all the details right now. But a few things to note are that this is not an inherited condition. Therefore, it will not likely affect any future pregnancies. Second, most Turner's cases miscarry in the first trimester, especially cases as severe as Sadie's. Turner's is not a mental disability like Down's or a physical handicap like Cerebral palsy.  There are normally issues with growth and she is more likely to have auto-immune diseases and thyroid issues as she gets older.
         The doctors concern at this point is still the same.  It is possible that she may not make it to birth or be able to survive the needed procedures. Their main focus right now is her heart. They will continue to monitor her very closely. I will be going to the doctor a lot, which is fine with me. I love to be able to see her on the ultrasound and hear her heartbeat. I will be delivering her in either Roanoke or possibly Duke or UVA, depending on what she needs at birth. As of now,  her weight is in the normal range and even with all the heart issues, her heartbeat is very strong.

     
              I have honestly prayed that others would not take my peace for denial or for a cold unfeeling heart. Those who do not know Christ and have never experienced His love, won’t be able to understand the peace, joy, and even excitement I have. I realize that this is going to be a painful and long journey. I am not ignorant to the fact that there will be days of crying and not wanting to get out of bed. But I also believe with all that is in me that through this journey I will know and love Jesus more and that this is all part of his plan to make me look more like Him. That is the goal of my life, that is why I breathe. How could I not be excited! How could I not trust Him when He has poured out His life, so that I may live. This is living! Living is not just the times of ease, living is the trials. Living is not just the joy, but living is the pain. But living your life hidden in Christ means that there does not need to be fear regardless of what this journey holds. And I have the promise that at the end of this journey I will look Christ full in His face, in all His glory and will spend eternity worshipping  Him… knowing that HE IS GOOD. Not because my life was easy, but because He is God.  OH JOY IN HIM! PRAISE MY REDEEMER! Without Him this story would be much different, I would be in despair, but my life has been bought with a price. Now I rest in the Hands of the Almighty Creator and there I will stay.