Not sure how to begin this post... I can't believe that I am typing this honestly, I am more than frustrated, concerned, unsure. Charlotte had been eating really well for about 3-4 weeks, but as the cliche' goes, all good things must come to an end. I was afraid to believe that her eating would not be one of those things, and here we are, facing the same problems that we were just a short month ago. We have changed nothing, and yet we are now again experiencing refusal of food, gagging, and vomiting again. I am unsure what has changed, ???teething??? can we blame it all on that. I hope so, but she just doesn't have the reserve and can't afford any setbacks. Our new plan is to stop feeding her at night through her tube, and just tube whatever she doesn't eat during the day. I am fine with this, but that is just to sustain her, it doesn't fix her disinterest in eating her meals and enjoying that with us too.
We have also had to increase Charlotte's blood pressure (bp) medication because her pressure is still higher than they want it to be. She is still taking 2 different medications also. And still, no answers as to why... I requested Charlotte's records from her hospital stay that was prior to her heart surgery today just to see what her blood pressures were then. We also saw Charlotte's neuro surgeon last week, and we are postponing her spinal surgery because her bp is still unstable. On Friday, Charlotte will also have another echocardiogram of her heart to look at it's size. Before her heart surgery, the Right side of her heart was significantly enlarged, and it is supposed to return to normal size within 6 months - 1 year following surgery. It has been almost 8 months, believe it or not. So hopefully, we will see some improvement. Her last echo was done in October.
I feel like I am on a mission. Like I have this drive to find out how to help our daughter and I keep hitting brick walls. It is tiring pushing her and all of her doctor's every single day, but I believe in my heart that she deserves to feel good. I don't know if she has ever felt good??
I chose this picture to post today because I love how simple and beautiful it is. Sometimes I find myself looking back trying to find a moment when I felt like things were simple. I have to go pretty far back. I wonder if I will ever feel that way again? I know life is complex, and it makes you who you are, and if it was easy then what would be memorable about it? You wouln't have the feeling of accomplishment if you didn't have challenges to overcome. I don't want simplicity for me... I want it for my daughter. She has overcome many more challenges than any child should have to at her age. She has proven she has character and strength beyond measure. Sometimes I just want to yank out her feeding tube, stop giving her her medications, stop taking her to the Dr., stop analyzing her every move, and just let her be her. I wish so much that I could, but I can't, we can't. I crave the normal things and when I observe others sharing those moments with their children, it tears me up inside. It isn't that I am really jealous of them, I just have this powerful urge that hopes they realize how great they have it, and I want them to understand that we work sooooo hard for the little bit of normalcy that we do have.
As I write, I am searching for a way to end this entry on a positive note, to find some form of closure for you and myself. But the thing is, I don't have closure. Everyday I am thankful for the small hurdles we overcome, the new things Charlotte learns how to do, but we are also left with many unanswered questions. What also remains each day though, is hope. Without hope, I wouldn't be pushing and I wouldn't continue my mission.
I pray that God, who also knows what is in my heart, will continue to guide me and help me understand, but also that He hears the tears that I cry as a mother. I am taking the best care that I know how of His gift.