**Pictures will be coming as I can get to a computer. So check back periodically!**
Another extremely long post. But this post is all about my pregnancy. I recommend using the bathroom and getting a snack before settling down to read.
We found out in early October that we were expecting Charles and we were thrilled! We had our first ultrasound October 8, 2013 and we loved hearing his strong little heartbeat. As the pregnancy continued I became more sick more often. I had several visits to the ER only to have them tell me I was fine and sent me home.
So despite me feeling I'll so often we were still so excited that we were having Charles. We had names for both a boy and a girl picked out and we were anxious to find out what we were having. Each time we had a doctors appointment we would get our hopes up that this was the day we were going to find out what we were having. And each time we were disappointed. They would try and get Charles to move his legs out of the way, but he never would so we just figured he was being stubborn! (Not stubborn, simply unable to move his legs!)
Finally our targeted ultrasound arrived on January 27, 2014. I was 23 weeks pregnant and anxious. I had been increasingly concerned because I had still not felt movement. Whenever I was asked if I had felt the baby moving I would sadly say no. The doctors attributed it to being a first pregnancy and I probably didn't know what I was feeling.
We had made up our plan for the day after our doctors appointment. We were going to go to the visit, find out if we were having Charles or Lilly and then we were going to go to lunch and buy the first gender specific outfit. That day did not go how we had planned. Not even finding out the gender of our baby.
As we were watching our ultrasound of our baby the tech would point out all of the good things to us. We were so excited to hear our baby's heart beating and to see so much movement in the arms. She told us the baby had broad shoulders (she also thought that maybe Charles was a girl but she couldn't be sure) and then proceeded to point out a great heart, good looking organs etcetera. She then said, ''Now I am showing you all of the good things.'' At that moment I knew something was seriously wrong. She then proceeded to tell is the baby wasn't moving its legs and that there was something in its spine.
We were devastated to say the least. We had about 3 hours before we could meet with our doctor, so we went home and just held each other as we cried. (This is saying something since it is very hard for Cody to cry!!) We had no words for the pain we were feeling. We had no knowledge about anything that was going on. Those 3 hours were miserable. We could hardly speak. We were in complete shock because we had been told for so long that everything looked good. No one wants to hear that something is wrong with their child. But it is even harder to hear it when everyone had been saying how good the baby looked and how strong the heartbeat was. They were right his heart is strong just like his little spirit!
While we were in the waiting room I was thinking about the fact that our baby couldn't use their legs and I had a very strong thought, ''What if it isn't just the legs? What if it is the brain?'' This particular thought that seemed to come out of nowhere prepared me for our next talk with the doctor just 10 minutes after this thought. Once we were finally able to meet with our doctor she told us what was wrong. Our baby had Spina Bifida. A birth defect that develops by 28 days gestation. (For more detailed information on what Spina Bifida is look at my other blog http://whatisspinabifida.blogspot.com/) We were in shock. Everyone wants a healthy baby. We had envisioned a healthy baby and our dreams of teaching our baby to crawl and walk were crumbling. Despite taking prenatals and doing all that I could to keep our baby healthy, we had a child with disabilities coming to us fast. Even though my doctor and Cody told me not to blame myself I couldn't help it. For a long time I would mentally beat myself up over it. I would go through everything I had done and would ask myself ''If I hadn't done that or if I had only done this would my baby have been ok?'' We had been told that aborting the baby was an option (except once there was a defect they no longer called it a baby, it was just a fetus then). To which my immediate response was ''It was absolutely not an option'' and Cody completely agreed. It makes me sick to know that to the doctors that was an acceptable option. To this day it still makes me sick and it makes my heart hurt. Looking back on the events of that day I know that Heavenly Father was giving me little promptings that I now know were tender mercies. He was preparing me to hear the news that our baby would need extra special care.
After we met with the doctor we were scheduled to meet with a perinatologist at Ogden Regional the following day.
When we got home from our doctors appointment we were both completely drained. Our bodies and our minds were exhausted. That night Cody and I received a Priesthood blessing. It helped a little bit but we knew we wouldn't feel completely better until we had a few more answers.
Cody called out of work. Obviously he was still in shock and we both just needed to comfort each other. It is impossible to put into words the way we felt those first few days. Many tears were shed because the future we had been dreaming of was no longer our reality. (Now I am not saying we were mad that this was happening to us. We were going through the grieving process. We had to mourn the child we had been imagining so that we could be prepared for the child we were receiving). Each and every child is a special gift from God and he was trusting us with one of his extra special children. (As a side note I had always felt that I would have a child with special needs and lo and behold we have Charles!)
The morning of January 28, 2014 as I was lying in bed thinking over the last day, I began to feel movement. I stopped thinking about the day before and concentrated on my stomach. I had definitely felt movement. I began to cry and began thanking my Hevenly Father for allowing me to feel my baby moving. With tears streaming down my face I called out to Cody (he was in the other room at the time). When he came into our room and saw my tears he immediately came to help me, not knowing that they were tears of joy. I told him I could feel the baby moving and that they were not small movements. (By that night Cody could feel the punches from the outside of my belly).
This tender mercy was an answer to prayer. When I first felt Charles move I was overwhelmed. I knew he was just trying to tell me that he was alright. I felt like Charles (although we still didn't know the gender at the time), was saying, "Mommy, I just want you and daddy to know that I am here and that I love you and I am ok". Thinking back on my pregnancy I get to have those sweet feelings in my heart all over again, and they remind me just how blessed I am to be Charles' mom.
When we met with the perinatologist we were finally able to learn that we were having a boy! We were thrilled! We could finally use a name not just calling him baby. We were able to learn a little more about what Spina Bifida was, but we wouldn't know much more until we met with Paula. She is the expert on Spina Bifida at Primary Children's Hospital.
As I reflected on what we had been told, that abortion was an option, I had many thoughts and feelings. My initial response was shock and then anger. How dare someone tell me I could get rid of my baby! It deeply upset me and it was something that I truly struggled with. As I was going through this I remember asking myself, if we had aborted what would have happened. (Let me clarify, aborting the pregnancy was NEVER an option!) I very distinctly remember feeling my answer to that question. "You would never have had any children." Plain and simple. I felt that in giving me Charles and in giving us the choice to keep him or get rid of him, God was asking us, "Will you take a child any way I give them to you?" Of course I had no trouble with that. I wanted our baby just as God intended him to be!
Now, we have been asked many times if we had known about what was wrong with Charles before he was born and if we had the option to abort. I cannot express in words the sadness that this brings into my heart. Despite everything we have been through with Charles, I would never change our decision to keep him. I know and Cody knows how special Charles is and how many lives he has touched. I also know that even though this life will be rough and that I will never get to teach my son to walk in this life, the next life will be that much more amazing. To know that one day he will be healed is absolutely amazing! And the day that I get to see Charles walk and be without pain will be a wonderful sight. I look forward to that day more than words will ever be able to say.
This knowledge at times is hard to remember. Especially when things do not go as planned or as we had hoped. But, that knowledge will never go away and I am so thankful to know that through the Atonement my son will be made whole and will one day walk and that his brain will be healed and he will no longer rely on hardware to keep him healthy. Times have been extremely difficult these last few months. But, there have been moments of happiness and hope as well. I struggle everyday to find the good in what is happening and sometimes I see it and other times I don't. I do know that I will always be able to rely on my Father in Heaven to help me when I don't feel that I can go on.
We met with Paula at the end of February and got so many answers. They had looked at the ultrasound and determined that the defect was on L-1. Which was a good thing. The lower the defect on the spine the better. (See my blog What is Spina Bifida for more information). We transfered my care to the University of Utah, because that is where we were told we would have to deliver. After every doctors visit we would meet with Paula. She would sit down with us and explain exactly what we had just been told. These meetings were great! We usually couldn't remember everything the first time around so having Paula re-explain was so helpful!
We had an MRI done before Charles was born. The MRI showed us that he had never moved his legs. They were able to know that for sure because there was no muscle on his little legs. We had been told that with where his defect was (L-1) that it was possible Charles would eventually be able to walk. Everything we were told pointed to the fact that Charles was a mild case. (We know now that his case is very complex and baffling to some degree. More on this later!) Despite their optimism I felt in my heart that he would never walk. **Mommy always knows! Don't doubt the mommy!** The MRI showed us that his legs were twisted like a pretzel. When my doctor saw the MRI images she told us we had to have him cesarean.
The last few weeks of my pregnancy I had a doctors appointment twice a week. Because Charles was a high risk pregnancy they wanted to monitor him for any signs of stress. So I got to have a NST (Non-stress Test) done where I could just sit and listen to his heart beating. I came to cherish those moments and often times his heartbeat was so relaxing and calming that I would find myself falling asleep. I would record his heart beating so that I could listen to it again at a later time. Hearing Charles's little heartbeat put me at ease knowing he was still doing well and I could stop worrying for a little while. Those videos helped to calm me as I found myself starting to really stress!
At one point I was showing the video to some family members and my niece, Scout (2), fell in love with the video. She took it around to everyone and had them listen to it. She walked around telling everyone that it was, "Baby Charwles' heart". Seriously the stinking cutest thing ever!!
One great thing during all of my pregnancy was knowing that Cody and I were trusted to raise such a special spirit. That has been both humbling and terrifying. I have always been the person that always tries to control everything. With this pregnancy I had to learn to let things go. Otherwise the stress and the worry was going to kill me. I had to completely rely on my Heavenly Father to take my worries and to help me learn to relax. Once I have my stress over to the Lord I became a much calmer person. This took months to do. The first two months we knew about Charles all I did was worry and I almost went crazy over it. Turning over my stress to the Lord has helped me remain calm, despite everything that has happened.
Charlyse Wilson
