And the Curve Balls Keep Coming!

Well, what a story I have to tell! Jamie and I have been very unsettled about the whole surgical issue. Well, who wouldn't be...Right? We had very different perspectives on how Dax's ASD should be fixed. We researched till our eyes were so strained from the computer that it hurt to keep them opened. "Overwhelmed", really is not the word for it! Hopkins, based on the echo already wanted to schedule a surgical date for mid September and I felt too pressured and uneasy. I had just come to terms that Dax needed surgery but how was really eating at me. How do you place an implant in your own child that failed you? But, on the other hand how do you choose for your child to be cut open when is he perfectly fine at this moment?? Ugh...honestly I broke down last night and told Jamie this is something in life I just can't handle. For me the choice was easy when it was my body. When it comes to my baby boy...it's a different story. I was harvesting guilt and apprehension to say the least. So today was a day of built up emotions. We were scheduled to meet with a Doctor from Children's in D.C. This Doctor came highly recommended and initially had stated that Dax was recommended for surgery based on the echo performed at a local hospital. We had decided to pay him a visit after being overwhelmed by Hopkins. Jamie and I decided Dax needed to have a local pediatric cardiologist to follow him throughout his childhood and we just wanted to directly hear what he had to say. We enter his office and his staff was great. All were interested in Dax's outcome. The Doctor evaluated Dax and wanted to repeat his echo. He stated that the initial echo wasn't of the best quality and wanted to evaluate Dax from his own machine. So again Dax is hooked up and evaluated. There were six of us in the echo room just starring at the monitor...waiting. The Doctor stated his ASD appears much smaller on his machine. He did say that there is a plus or minus factor but that his ASD appears half the size. This time stating no surgical intervention was needed at this time. I tell you it was music to our ears! His advice was to wait another year and reevaluate Dax to see what changes occur. Will it grow? It's possible. Will it shrink? It's possible. Or possibly will it remain the same. All is unknown at this time. But, what was accomplished was that...We have time! We have time to decide and to think and to watch. God for some reason knew we weren't comfortable and just maybe might perform a miracle for our family yet again:) God made us aware of our little boy's issues but also gave us time to process and decide what is best for him. God might even present us with newer options. But, he has given us more time and hope to decide what's best for our baby!! That in itself is just what we need right now! So, from here we are waiting to hear back from Hopkins and probably I will go ahead and speak with CHOP. Until then, we are relieved and so very thankful to all those that prayed for our family! We value each and every one of you. Please know that because of your prayers I firmly believe Dax can have his own miracle!

The Research

Well, sadly until we decide how to manage Dax"s condition I have been absorbed in research and with the whole topic in general. Seems years ago you had two options. ASDs were either so large that they had to fixed or they were small enough that open heart at the time was too risky. With the advancements made with open heart procedures, other options and the known future effects of an ASD it is now suggested that all be fixed. The hard part is trying to figure out which way to fix him is best. Having to fix his ASD is something at this time I am still having trouble getting a grasp of. Even with the first hand knowledge of how it feels to have such a bad heart myself. I look at Dax and he is beautiful and healthy. He runs, plays and dances. He is carefree and the world is a beautiful place in his eyes. He has never seen how scary sometimes life can get. I just don't wanna take him from that right now. I don't wanna put him in a world of fear & pain. I know that sounds selfish and running from the issue. But, can't we just wait?? Just till Mommy can handle this?? Of course I am gonna do what is best but I want to be honest with you on my thoughts. I know he will be fine and that God along with the doctors will take care of him. But, this is really hard for me to allow them to step in this time.
Our progress so far has been great! I had Dax's echo faxed to me and it states he has a fenestrated ASD. Small hole in one area(labeled small asd) and in another area a PFO(hole that opens during baring down). He has no heart enlargement at this time but his tricuspid valve and pulmontic valve are strained. Basically, if his heart keeps getting strained such as in growth or sports there is a very high chance he will develop heart enlargement and valve issues as with myself. The theory is fix it now so that none of that will occur. I have spoken with 7 different doctors all with different views on how it should be fixed but all agree it should. I ask one yesterday...can't we wait 10 years just to see if there are better advancements out. His statement to me was, "Do you really want to take that risk with his heart?" "Do you want him to end up like you." But, I said, "that's not 100% he will and that he could be perfectly fine." His statement was, "look at the statistics, think of him not yourself. I know you wanna run away from this but simply you can't."
We have narrowed our choices down to A.I dupont(2 doctors there) and a couple at C.H.O.P. the 2nd in the world for pediatric heart surgery. In addition my own personal heart surgeon whom knows my condition best has referred me to two different Doctors at JHU. My surgeon's own son had open heart surgery performed by these two doctors. I honestly don't think I could get a better recommendation than from a heart surgeon who's been through the same thing! At this time we are waiting for an appointment with them first. If need be we will continue to get 3rd and 4th opinions never stopping till we feel comfortable.
I wanna thank all of my wonderful friends for helping us through this difficult decision. I have received so much feedback that was more helpful than you'll ever know! Please continue to pray that we make the right decisions for Dax and his heart:) I'll continue to keep you all posted!!

A new Chapter

As you know I've turned to writing for my new found comfort and for informative purposes for friends and family. Today, my world was rocked like no other. Seems my heart story is no longer just mine. I now share it with my littlest angel Dax. When I was just diagnosed I of course ran straight to listen to my children's little hearts. Mya's was strong and perfect and then there was Dax's. His was booming and here and there had what sounded like a never ending beat-swish. I was in denial thinking I was making this all up in my head. I had been encouraged numerous times to check the kids out by my cardiologist but I felt sadly if I'm not aware it will go away. Really not the best way to handle the situation but I felt too weak to handle it any other way. I had been through so much and my life was finally stable and happy again. So, this year I happily strolled into the pediatrician's office. Mya was first and finished quickly. Dax went next(as the stethoscope was placed on his chest) the pediatrician said...now can you tell me your heart history again. Ding Ding! My hidden fears were confirmed. So, echo's were ordered and performed. Dax's took a little longer but again...I was just putting silly thoughts in my head. Until, Dax says, "Mommy, mine took longer than Mya's". Ughh just another coincidence. One day later(today) I receive the call. "Well, Anne I've been sitting here trying to think of what I might say to you. I don't know how to tell you this and it saddens me to do this but I have to. I know clearly you wanna run but you can't any longer....Dax has a streched PFO and an ASD. He is 6 and at that age all openings should be closed independently. Especially with your heart condition and history. It appears it would be best if you meet with a pediatric cardiologist/surgeon. I can't be 100% sure they will fix it but I'm almost positive they will suggest some form of surgery or procedure. Most likely a closure device performed via catherization."
So, basically I will need to find a great, trustworthy pediatric cardiologist to take a look at Dax. I am filled with so many emotions at this point. Yes, I do know that it could be much, much worse and that knowing is better. But, wow we've been through so much these past couple of years!! So many complications occurred and permanent damage it's just down right scary!! So, I'm gonna focus on ONLY the positive. My friend said it best,"God's plan was for me to be sick first so that I can help chose my son's path and show him strength." We will get thru just like before. I am thankful that God gave me the strength to help diagnose Dax early before he has complications like I did. I am thankful that he will be healed and live a strong healthy life! I am thankful that he has fairly common heart defects that are the easiest to fix. I am thankful for today's technology and medical advancements. Lastly, I am thankful for knowing that I have faith in God that He will take care of my baby no matter what life brings! I will not run or push Him away I will find my strength from Him! So, my dearest friends...here's what you can do: Please pray and if you know or have any advice big or small please give it. Don't worry about over stepping or thinking it might upset me. If you know of anyone who has had surgeries or knows of a pediatric surgeon(a friend of a friend ect) please send their number my way. I would appreciate any input or advice big or small! I'll keep you all posted. Thank you to all of my incredible friends who I honestly couldn't do without!! Love you:)