We had our weekly check up today. We usually go on Monday's but Bryce has been sick this week so we had to reschedule for today. Brayden's heart rate was 143 today. It was 163 last week and 180 the week before. We're not sure exactly what this means, if anything. 143 is still considered "normal." We had to bring Bryce to our appointment today because he was too sick to stay at Lisa's. We have never brought him before, and probably won't again if we can help it. He did really well, I just want to protect him from such grown-up things. Our Doctor was amazing and let us leave right after the ultrasound. We will meet with him next week. Our ultrasound tech was very sweet today. We were asking her questions and I told her that I have a lot of questions that I want answered. We know that Brayden has trisomy 13, but what does that mean for him? I want to know exactly what is wrong with my baby. Even though that will be painful, I have to know in order to settle some of my fears, or worse, confirm some of my fears. When I told that to our ultra sound tech, she looked at me and said, "I'm beginning to see some changes, but we'll talk about it next week." One might read that and think that could possibly mean good news, but the way she said it scared me. So now, I await to hear this news next week. I am preparing myself for another traumatic Monday.
"As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things." Ecclesiastes 11:5
Tuesday, February 15, 2011
Friday, February 11, 2011
Questions...,
I have so many of them. Sometimes I hate myself for asking them repeatedly. As a Christian, I know I shouldn't but it's hard not to. "Why me God? Why our baby?" I always answer these questions with "Why not us? Why not our baby?"Those answers make sense in my mind, but not my heart. Over the last month I have questioned whether or not I will ever be able to be happy again without feeling guilty. We are closing on our brand new house today. What a blessing that is in the midst of a storm. Even so, I am not overcome with joy. A few weeks ago I brought my Aunt Cindy to see our house. I was showing her around saying, "This is going to be Bryce's room, this is Bryce's playroom, and this will be a guest room." Then suddenly, sadness overcame me. I thought to myself, where is Brayden's room? I'm carrying a child that will never have a bedroom in our home. It made me feel guilty, angry, and sad. I don't want to give anyone the impression that I don't have faith that God can perform a miracle and heal Brayden. There is nothing that my God cannot do. However, what I didn't share in the first blog is Brayden's prognosis. Both of my Doctors have given him the same exact odds: Statistically, he will not survive birth. Based on his abnormalities, if he does survive birth, they give me a few hours at best with him. How unfair.
Then there are the questions that I have received from other people, including nurses and doctors, that rip me to my core. "Why are you doing this to yourself?" "Don't you think that this is going to make it harder on everyone else?" (They are referring to my decision NOT to terminate Brayden) I wish that I could have stood my ground and ministered to these people. I wish I could have said that I serve an all-knowing God that would take my baby when he was ready...but I couldn't. It was all I could do not to cry so I simply said "I just can't."
Then there are the questions that I have received from other people, including nurses and doctors, that rip me to my core. "Why are you doing this to yourself?" "Don't you think that this is going to make it harder on everyone else?" (They are referring to my decision NOT to terminate Brayden) I wish that I could have stood my ground and ministered to these people. I wish I could have said that I serve an all-knowing God that would take my baby when he was ready...but I couldn't. It was all I could do not to cry so I simply said "I just can't."
Thursday, February 10, 2011
Our Trial Begins...
I thought that this blog would help answer some questions that some have about our situation. I also thought it would help me understand my own feelings about our situation.
On December 2, 2010, I found out that we were expecting our second child. Marcus was at work when I found out. After I called and told him the news he called me back about an hour later. I'll never forget how excited he was. "I can't stop smiling, Deana." We did not plan on this pregnancy, but from the very beginning we said that it's all in God's timing, not ours and we were ecstatic! On December 27th, we went for our first OB appointment. We were both so excited. I remember saying that I couldn't wait for Christmas to be over (so not like me) so we could go to the Dr. to see our sweet little peanut. I never thought that anything could be wrong with our baby...that thought never crossed my mind. Our nurse, Cathy was conducting our ultrasound. For whatever reason, as soon as I saw our baby on the monitor, I felt uneasy. I can't explain where the feeling came from....after all, I had no idea what exactly I was looking at. Our nurse never really let on that something could be wrong. A few moments later our Dr. walked in. He said that they saw what may be a separation. It was probably no big deal, but they wanted me to come in for another ultrasound Monday morning. I simply nodded in disbelief at everything he was telling me. As Marcus and I left the Dr.'s office, I broke down. I just knew in my heart that something was terribly wrong with our peanut. Monday morning we arrived at the Dr.'s office. I have never been so scared in my life. This time, we has an ultrasound technician perform our ultrasound. She was so upbeat and positive. This time, the baby looked great to us. They put us in sub-waiting after the ultrasound to wait on the Dr. While waiting, Marcus and I giggled and looked at the pictures of our new addition. We were full of hope that nothing was wrong. Several minutes later we were called back into a room with our Dr. The first thing he said was that there was no separation. I looked at Marcus and grinned, knowing that we were going to be okay. Nothing could have ever prepared me for the next thing our of our Dr.'s mouth. "There is no separation, BUT your baby has a fluid filled tumor on the back of his neck called a cystic hygroma. This is usually an indication of a chromosome disorder or major heart defect." Suddenly, I couldn't breath. Did he have the right chart? I am the queen of easy pregnancies, this kind of thing doesn't happen to me. I can't tell you how long our sweet Dr. talked to us, I zoned out several times in disbelief. The next thing I knew we had an appointment for the next morning with a specialist out of Birmingham. The next 12 hours is a blur. I have no idea what I did for the rest of the day. I spent it crying, screaming, and being in total disbelief. The next morning, Marcus and I woke up at 5:00am. (Although we never really went to sleep.) We dropped Bryce off at Lisa's and headed to the specialist's office to basically find out our fate. The Dr. was very knowledgeable, but like any good specialist, nothing was sugar-coated. He gave us a huge percentage that our child would have down syndrome and/or a major heart defect. Then, I had an amniocentesis done. We would know the results in 48 hours. The next two days were the longest days of my life. The day our results were due, I called the specialist's office twice. The nurse assured me that the second the fax came through, she would call me. I had just gotten my students in and settled after lunch when my phone rang. This was it. I stepped outside and answered the phone. When I said hello, I realized that it was not the nurse calling, it was the Dr. I knew then we weren't going to hear good news. "Mrs. Sanders, you're baby has trisomy 13. He will not survive, he is 'incompatible with life.'" My heart stopped. I had never even heard of such a condition. How could our sweet baby have such a horrible thing? "I know you probably can't think of any questions right now, but you can call me if you do. You're baby is male." That was the last time I have spoken with our specialist. I thought that he delivered the news terribly, but looking back, how can you tell a mother that she is carrying a baby that she will never get to see grow up? We were having another baby boy and he was going to die? It didn't make sense. I immediately called Marcus. His only response was, "Deana, don't tell me that, there's no way..." We were in shock. Needless to say, I had to leave work. I thank God for getting me home that day. Even though now I have lived with this reality for a month, it still doesn't feel real. And now, my reality is going to the Dr. every Monday to see if my baby is still alive. No mother should have to wonder if this is going to be the week when she will have to say goodbye to her baby. I have never met this child, but he is mine. I love him more than anything and I am desperate for a miracle. We have decided to name our baby Brayden James. I knew that I wanted another "B" name like Bryce. I thought about Benjamin based on its meaning, "one who brings sorrow." But then I thought, babies bring joy, not sorrow. So I chose James as his middle name because that is Marcus' first name and also because it means "peace." How fitting, our baby will be at peace.
On December 2, 2010, I found out that we were expecting our second child. Marcus was at work when I found out. After I called and told him the news he called me back about an hour later. I'll never forget how excited he was. "I can't stop smiling, Deana." We did not plan on this pregnancy, but from the very beginning we said that it's all in God's timing, not ours and we were ecstatic! On December 27th, we went for our first OB appointment. We were both so excited. I remember saying that I couldn't wait for Christmas to be over (so not like me) so we could go to the Dr. to see our sweet little peanut. I never thought that anything could be wrong with our baby...that thought never crossed my mind. Our nurse, Cathy was conducting our ultrasound. For whatever reason, as soon as I saw our baby on the monitor, I felt uneasy. I can't explain where the feeling came from....after all, I had no idea what exactly I was looking at. Our nurse never really let on that something could be wrong. A few moments later our Dr. walked in. He said that they saw what may be a separation. It was probably no big deal, but they wanted me to come in for another ultrasound Monday morning. I simply nodded in disbelief at everything he was telling me. As Marcus and I left the Dr.'s office, I broke down. I just knew in my heart that something was terribly wrong with our peanut. Monday morning we arrived at the Dr.'s office. I have never been so scared in my life. This time, we has an ultrasound technician perform our ultrasound. She was so upbeat and positive. This time, the baby looked great to us. They put us in sub-waiting after the ultrasound to wait on the Dr. While waiting, Marcus and I giggled and looked at the pictures of our new addition. We were full of hope that nothing was wrong. Several minutes later we were called back into a room with our Dr. The first thing he said was that there was no separation. I looked at Marcus and grinned, knowing that we were going to be okay. Nothing could have ever prepared me for the next thing our of our Dr.'s mouth. "There is no separation, BUT your baby has a fluid filled tumor on the back of his neck called a cystic hygroma. This is usually an indication of a chromosome disorder or major heart defect." Suddenly, I couldn't breath. Did he have the right chart? I am the queen of easy pregnancies, this kind of thing doesn't happen to me. I can't tell you how long our sweet Dr. talked to us, I zoned out several times in disbelief. The next thing I knew we had an appointment for the next morning with a specialist out of Birmingham. The next 12 hours is a blur. I have no idea what I did for the rest of the day. I spent it crying, screaming, and being in total disbelief. The next morning, Marcus and I woke up at 5:00am. (Although we never really went to sleep.) We dropped Bryce off at Lisa's and headed to the specialist's office to basically find out our fate. The Dr. was very knowledgeable, but like any good specialist, nothing was sugar-coated. He gave us a huge percentage that our child would have down syndrome and/or a major heart defect. Then, I had an amniocentesis done. We would know the results in 48 hours. The next two days were the longest days of my life. The day our results were due, I called the specialist's office twice. The nurse assured me that the second the fax came through, she would call me. I had just gotten my students in and settled after lunch when my phone rang. This was it. I stepped outside and answered the phone. When I said hello, I realized that it was not the nurse calling, it was the Dr. I knew then we weren't going to hear good news. "Mrs. Sanders, you're baby has trisomy 13. He will not survive, he is 'incompatible with life.'" My heart stopped. I had never even heard of such a condition. How could our sweet baby have such a horrible thing? "I know you probably can't think of any questions right now, but you can call me if you do. You're baby is male." That was the last time I have spoken with our specialist. I thought that he delivered the news terribly, but looking back, how can you tell a mother that she is carrying a baby that she will never get to see grow up? We were having another baby boy and he was going to die? It didn't make sense. I immediately called Marcus. His only response was, "Deana, don't tell me that, there's no way..." We were in shock. Needless to say, I had to leave work. I thank God for getting me home that day. Even though now I have lived with this reality for a month, it still doesn't feel real. And now, my reality is going to the Dr. every Monday to see if my baby is still alive. No mother should have to wonder if this is going to be the week when she will have to say goodbye to her baby. I have never met this child, but he is mine. I love him more than anything and I am desperate for a miracle. We have decided to name our baby Brayden James. I knew that I wanted another "B" name like Bryce. I thought about Benjamin based on its meaning, "one who brings sorrow." But then I thought, babies bring joy, not sorrow. So I chose James as his middle name because that is Marcus' first name and also because it means "peace." How fitting, our baby will be at peace.
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