Sixty-Forty

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.

Vada's Newest Heart Pictures and My Newest Fears

Today I took Vada to our local hospital for a chest XRAY. This up coming Friday we go back to Peoria to meet with the Cardiologist. As things stand right now we are only doing this XRAY. However, if her heart is in a questionable condition, then we will do a unscheduled ECHO.

This is the second time that I have held her XRAY in my hands. Last time I didn't look at the disk. I don't know why but I never thought to do so.  In fact at this moment, after reviewing this current XRAY, I am kicking my self for not looking at the last one when I had it in my possession. Actually, I am kind of kicking myself now, for looking at this one but that's me.

Truthfully, I am not one of those people who wait and think of only happy thoughts. I try to be, my husband is, for the most part and I think that his optimism is a testimony of his trust and faith in God, not that I don't share those same things. My upbringing was just different than his and it has caused me to see things and deal with things differently than him. My past has molded me into who I am today. I am an all or nothing, tell it to me straight and don't sugar coat it type of person. Rip off the damn bandage and screw the the raw patch of skin left behind from doing it. I would rather know what I am dealing with upfront no matter how severe, rather than figuring out the degree of a situation on my own.

My personality has brought problems in the past. I often worry myself too much and annoy others from doing so. Ill admit that sometimes knowing isn't always the greatest thing but I would still rather know than not. I cant help the way that I am, I mean, I control myself but as much as I hide my feelings and thoughts, I still feel and think them. I love Vada and I am scared to death of loosing her. I am scared of the prolonging of her heart repair and the surgery in general. I am terrified of her seizures and what they can do. I'm scared of the medications that we will have to use if the seizures do come back. This is all scary to me. Do I enjoy her any less because of my fears? Not a single fraction of a bit. I enjoy every moment with her. She is an amazing baby and I am proud and grateful to be her mother. I refuse to let my fears consume the time that I have with her or with anyone else in my life. I keep my eyes forward and I charge through each and every battle that arises because it is what I do. I am a fighter I always have been and I always will be and I know that Vada is too.

Wow, what a rant...
Anyway, lately, I have been a little (yes, a little) concerned and at the same time grateful for this up coming appointment. I haven't noticed anything different or even concerning in Vada except for one thing. I mentioned it on Sunday to my pastors wife and to one other person. Often people look at me as if I am a "worry wort" or irrational. It's possible that I am a bit of both but to avoid the comments and the looks that are often shared when I express myself, I have withheld these new concerns and maintained my composure. Now that I have looked at this XRAY, I am even more concerned than I was. Go figure.

Vada put me on alert about a week or so ago. I can not pinpoint the first moment, but several moments altogether do stick out. Vada laying on the floor playing, babbling, just waking up, after crying and in her car seat when doing nothing what so ever except for sitting. She has begun panting. At first I thought the seizures were back. Vada always had rapid breathing through her seizures. (Click here to see video's of Vada's seizures. The first are the most accurate. They were done before she started ACTH and are without doubt West syndrome/Infantile Spasms.) 

Over the past week I have pulled over twice to watch Vada during these odd breathing episodes and like I have mentioned, there have been plenty of them. However, not once has there been anything else attached to the breathing. No signs of seizures. No blue lips or discolored skin. Her temperament is always her normal laid back baby way and it doesn't seem to matter what she is doing, or not doing, when her breathing changes.It seems like she is just catching her breath from a long run and then once she has all is well.

I cant help but think that this is it, or the beginning of it.

 Isn't this amazing. This is my baby's heart. Her inner workings. Her life line. Its beautiful.

So anyway, I peaked at the XRAY. I couldn't save the pictures to my files so I did the next best thing, I took a picture of the picture and I've posted them above. In November of last year I posted a chest XRAY that was done during one of Vada's many inpatient stays at OSF, see here for that picture-it is all I have to compare this recent one to. Clearly, her heart is larger. I am no doctor, obviously.  I claim to only know what I have been told from specialists and what I have read myself. I don't claim to know a single thing about the pictures that I am sharing and until Friday I wont know anything more. These are just my thoughts and some more of my fears.

For those of you who are unfamiliar with Vada's heart condition she has ASD and VSD also known as or refereed to as Complete Endocardial Cushion Defect. She also has a leaking valve and an narrowing artery.

You know how at times you don't want to talk about a certain subject for fear of some how changing the out come? Well, I am hoping that from venting my fears once again, that I will have made myself look like a fool come this Friday. I know realistically however, its all in God's hands and I trust him.

Nearly Insignificant

This past Tuesday, after we had dinner with the Justin and the girls, Vada and I took another trip to Peoria. She was scheduled to be at the hospital on Wednesday at 8 AM for her sedated ECHO so the hospital reserved a room for us at a near by hotel that way I wouldn't have to drive at five in the morning to get there on time. I am so grateful that they do things like that. This was the second occasion where the hospital provided us with a room.


Besides spilling cheese sauce on Vada's head and forgetting the baby soap the night went well. She fell asleep at midnight and woke up at four, with a feeding somewhere in between (which is pretty close to her "normal" nightly routine), but I was able to get ready and not be rushed so it all worked out.

When we got to the hospital everything went better than I could have imagined. Vada fell asleep and I was able to lay her on me and keep her asleep during the ECHO so we didn't sedate her.

Dr. Bramlet was able to see everything that he needed to see didn't but we didn't receive any set in stone answers then. Actually, what I was told that day was a one extreme or another case scenario. She either would need surgery and need it right away, or she wouldn't and we would be holding off for at least two months. I was dumb founded (which may or may not be an easy things to do) at how undetermined he actually was acting. I didn't understand how it could be one way or another, with nothing in the middle. So, I questioned him.

Dr. Bramlet said that over all children who have Down syndrome and heart issues tend to need operations sooner than those who do not have Down syndrome. Typically the issues seem to arise no later that four to six months, hence the original date for surgery that was given to us during our pregnancy with Vada. He explained that it was either one extreme or the other because she is past that point. He said that he wanted to meet with all of the Cardiologists and get the opinions of the whole group. He told me that they would discuss Vada either in their Friday meeting or on their Monday meeting. Then once they had discussed her he would be calling me back. Mentally, I had decided that if he called me back saying we would need to do surgery that I would take Vada in for a second opinion. Truthfully, while I am happy with the news that I received today, I am still wondering if I should do that, or if I should leave well enough alone.

Around 8:30 AM I did receive a call from Dr. Bramlet (i'm so grateful that I didn't have to wait until Monday). He said that he had discussed Vada's case with his partners and they had come to the conclusion that Vada's VSD is what they are considering "nearly insignificant", (his words). What that means is that yes, the hole(s) are still there, they haven't gotten smaller, but they haven't gotten larger either. Vada shows little to no signs of "struggling" and they all agree that the surgery should be held off awhile longer. By waiting it will give Vada time to grow more and for her heart to recover from the nasty affects that took place because of the ACTH. Doing the surgery now could also bring forth issues pertaining to her recovery due to her stenosis and immunity.

When it comes to Vada and her many different medical concerns I am constantly reminded of the movie Dude Where's My Car. There is a scene when the guys are in the drive through of a Chinese restaurant...



and while it may seem a little inappropriate, there has always been another "and then". I cant wait until her heart and the seizures are no longer an issue so the next "and then" is something joyful and exciting!

As long as Vada does well on a cardiac level, her next appointment will be in four months making Vada fourteen months old and putting us into the month of May 2011.