Charlotte and I braved the green beans today. I was a little scared to push her to do it, but she didn't even choke today!! What an accomplishment. You can see in the video she is learning to chew, which is a great accomplishment for her, especially when she has in the past choked many times on those little Gerber puffs that melt in your mouth... But today she did wonderful, and even tried to put a chunk in her mouth that she picked up off of the tray. Now, to most of you, this new accomplishment may not seem very significant, but teaching this child to eat has been grueling, and I am so proud to report advancement onto chunky foods. French fries, here we come!! (just kidding)
On a more serious note, I do have other news to report. Last Tuesday, we visited Charlotte's cardiologist for the first time since her surgery (her cardio-thoracic surgeon had been seeing immediately following surgery and had released her from his care). This appointment was just a check-up/follow-up. However, as usual, we got a little more than we bargained for.
Charlotte's pulse was on the low side (72) but they also determined that she has high blood pressure... Her top number was 120 on two different ocassions, both of which she was not crying, or upset, and was laying down. The top number should be below 100. So, we are again undergoing a battery of tests to determine why this is occuring.
The 2 problems that come to mind for the doctors are something wrong with her kidneys or brainstem. At first, they thought that it was possible her kidney had been damaged during surgery. So, they sent us for an ultrasound of her kidney which came back as normal. So, this rules out any damage caused by surgery. However, there still could be problems with her kidneys secreting too much of a certain hormone called renin. The doctors are a bit puzzled once again. They are not sure what the cause of her elevated blood pressure is, but will probably have to treat her blood pressure to get it back to normal. (Although they cannot treat her blood pressure until the testing is done). They have also scheduled Charlotte for a CT of her kidneys, and we are repeating the MRI of her brain and spine at the same time to save her from having to have sedation more than once for all of these tests. The brain MRI will just tell us if there are any changes in her brain, and the spinal MRI will help us determine when to do her next surgery. Those tests will be done on Halloween...not my choice of a date, but the first available.
It took me a while to post all of this because I was myself in disbelief thinking maybe we were overreacting. I even took her back to the office and made them check it agian, but it was still elevated. I just don't understand how she keeps having these problems with unknown causes...??? Then, after recieving the news of my friend, about Addie, I was so angry... I was angry because here I was praying for a diagnosis, something concrete, and here they are, recieving a diagnosis so terrible. Is that what I wanted?? No, but I felt so helpless for several days. Helpless for them, and for Charlotte. I got so angry, and yes, angry at God for a while. That day, I went to church. I went and sat in the silence of the church, listening to what God had to tell me, and explain to me why this was happening. I didn't want to be angry...I wanted to trust in God. As I sat there weeping, I looked up at the cross, and thought about the suffering of His son. The agony He must have gone through, and then I wiped my tears and told myself once again. Have Faith.
I began to focus on praying for guidance. Maybe not an answer, but guidance, strength, and for the physicians whose hands our precious babies are also dependant upon and who we as parents trust in. As a parent, it is hard to put your child's life in the trust of other's hands. You feel as though no one can do as well as you...but sometimes even all you can do isn't enough. I am in need of help. From physicians, nurses, therapists, nutritionists, the list goes on. But most of all, from the Creator. He knows the plan, and sometimes I get ahead of Him, impatiently demanding an answer. Answers don't always bring peace...this I have been taught. Peace comes from Faith. Faith that He will see you through, even the darkest times and will raise you up to celebrate the wonderful times...such as eating green beans.