Ive been avoiding this post since Friday. We've been asked several times since then about our visit to Peoria and I have repeated the story enough to now feel as if the news is a healing wound verses a fresh one.
The lord has blessed Justin and I with the knowledge of our Sweet baby girls medical "issues" since before her birth. However, no matter how prepared we may have felt in the past or feel at this very moment, when we meet some of these issues head on we turn into frightened children, Or at least I do. When I feel like this I try to take comfort in my faith and my belief in Jesus Christ. In all aspects of my life but especially in moments like these I find God's love for me and all of his children comforting.
When I am breaking in all of the same areas that have been mended too many times to possibly withstand more tragedy, I try to tell myself to take comfort in knowing that God will not give me more than I can handle. It has actually become somewhat of a personal mantra of mine and at times a saying that I also resent.
Driving home on Friday I desperately needed a warm embrace. I try to remember that I am never alone and while driving with Vada in the back seat, how I could possibly feel alone is beside me, but I did. I was tired and trembling and every part of me ached from the knowledge that I would soon face another great fear.
Usually I am fine with the Peoria trips being just Vada and I. I actually almost enjoy that time alone. Its a time that I recollect myself and my thoughts. Today, however, I wished for the company of my husband. I spoke with my sister on the phone and I did appreciated the conversation but I wanted to feel Justin's hand in mine. I wanted to hear his smooth voice saying absolutely nothing yet somehow forming all of the perfect words that I needed to hear.
Sometimes I wonder if I am suppose to endure all of this alone so that I somehow find the person and the voice that I have lost through my depression. Or maybe I am suppose to be reaching out and by breaking through the walls that I have somehow created God is helping me find who I once was. Either way, on this trip home, I felt alone and lost.
On Friday we did end up doing an unscheduled ECHO. The XRAY that was done on Monday had shown Vada's heart to be enlarged and while examining Vada on Friday, Dr. Bramlett had heard more of a murmur than what he was used to and he felt that it would be the best idea to do further testing.
The ECHO showed differences in her heart from the last ECHO. As Dr. Bramlett was describing the changes he pulled out a heart chart that resembled the one below. He flipped it over onto the blank side and began drawling his version of Vada's heart. I have high lighted the areas verses scanning his drawing as it is easier to read this way.
Vada's Pulmonary Valve is still narrowing and has narrowed considerably compared to the ECHO done only a couple of months before this one. The Pulmonary Artery is leaking some, but due to the narrowing of the Valve it is a very minimal leak. The narrowing is actually a benefit to Vada's condition and it protects her lungs from becoming full of blood and causing other complications.
The red is showing the opening between the Right Atrium and the Left Atrium. Basically, there is no wall between the upper two chambers and there needs to be one. However, as scary as this may sound, it is a condition that many people live with their whole youth and into adulthood before ever needing any surgical repair done. The concern falls mostly at the bottom of Vada's heart, between the Right Ventricle and the Left Ventricle. This is shown in blue. The "hole" is very small. In fact it is so small that it is not really effecting her too much altogether. Dr. Bramlett says that her heart condition is what they consider a "perfect defect". If you had to choose between any heart condition, this would be it, because everything is working together to compensate for something that is not fulfilling its duties. One defect helps another and so on. The green is showing that the right ventricle is enlarged. More than likely by a over flow of fluid/blood into that chamber. If you look at this post there is a picture of the XRAY that was done this last Monday and you can tell that her heart is enlarged.
Sixty-forty. That's how the cardiologist is weighing his decision for surgery. Sixty being the greater and where he thinks she needs to have her heart repaired soon, as in this Spring. The forty is his side where waiting has its benefits as well. This Monday Dr. Bramlett and his team will meet with the pediatric cardiac surgeons and from this meeting we should have the answers on which route we will be taking.
Making the decision to proceed with the plans of heart surgery is a decision that is a very difficult to make. At this moment it is not actually being made on the basis of Vada's heart condition, as it is timing. Right now this is a window of opportunity. Vada has been seizure free for quite a while now. She has recovered, for the most part, from being on the ACTH steroid and her heart is now in a position where it could withstand an operation. At one point the cardiac team was saying that her heart was practically inoperable and from fear of the seizures returning the Doctors think that this is our moment to go in.
Its strange because I am terrified of Vada's seizures returning. Not because of what they look like but because of the damage that they and the medications can cause. She is doing so well. "Leaps and bounds" is what her physical therapist always says in reference to her achievements. I lost her for awhile during her seizure treatments. She stopped doing things and stopped smiling. I have her back now, and I don't want to give her up. I am afraid of what all of this may mean. If we do operate then the stress from the surgery could cause the seizures to return. I am being told that it is a strong possibility. If we wait then we may have shut the door on our only opportunity of repairing her heart because, once again, the seizures may return.
Dr. Bramlett said it very well when he told me that this may be a decision where if something happens down the road we may find ourselves wondering if we did in fact make the right decision. He said that this is a situation where questioning ourselves is not something that will help in any way. All we can do is make the decision that is what we believe to be in Vada's best interest and take comfort in the knowledge that we were doing what we thought to be right for her. As much as I don't want the surgery, I believe too, that this is her time.