Before we go any further, I need to tell you to sit down in a room alone, grab the tissues and prepare yourself. This is not an easy post to write and I can't imagine reading it will be any easier.
We have just returned from our over-two hour appointment. I am sure no one was prepared for that long appointment. I know my bladder wasn't at all! But I digress. Let me start from the beginning. If you haven't read our ultrasound for fun part 2 post, please read that before going any further.Read Now
Today, Paul and I drove up to Novant in uptown to meet with Dr. Shaver. We told our nurse that we had an ultrasound almost two weeks ago for fun to find out gender. We did not share that that nurse had concerns about the heart. However she came to the same conclusion. I will tell you baby Shea was not being cooperative. He was in a terrible position and would not move very much to give her a great view. What a stinker! We did however get a great shot of his arm and fingers. We also saw his spine and ribs....super cool. I will forever remember those moments of this appointment.
The nurse had the Dr come in to look and see what he could find. He was very honest, caring, sympathetic, and informative. He explained what he was looking for in the heart and then continued to explain what he saw. While we have no official diagnosis at this point (we will be meeting with a pediatric cardiologist who specializes in fetal care) we do know that our sweet baby Shea does not have a right chamber of his heart. Technically he has one, but the ventricle that flows from the right to left chamber is blocked and the right side is significantly smaller...almost to the point where we had a hard time seeing it on the screen.
Our son has a congenital heart defect at 18 weeks old. (In utero)
I can't even describe our feelings, our heart and minds are spinning. The doctor continued to give us information and answer our questions as we tried to process this news. He did suggest an amniocentesis because it would give us more information based on the genetics. He isn't thinking down syndrome based on everything else he saw, but something more rare. He did tell us all tests could come back fine, but there might be something genetically going on and that we would have more information if that was the case.
I also have to share that he gently, brought up terminating. I am pro-choice, always have been and always will be. But I have never thought what will I do if put in the situation of having to decide. Currently I am not leaning that way at all. But I know as more information comes in, I and Paul will have to decide what to do. But looking at the pictures we brought home today, we love our baby boy and want nothing more to hold him in our arms.
The doctor honestly told us our baby would be delivered in either CMC main or out of state at another hospital. I'm not shocked by this, but a little sad. I really enjoyed our hospital tour of CMC-Pineville. And knowing we could be in another state, well, it made it clear this is serious.
This post has been written in stages so please forgive me readers for the clear change in tone of the post.
I left off with the word serious. Don't get me wrong, I knew this was serious...seeing that tiny chamber with no flow of blood, that's serious. But thinking about going to CHOP, Atlanta or another renowned hospital for Shea's birth and heart surgeries...yep sh*t just got real!
I'm not going to lie when the Dr and nurse left the room, we both had a moment. We had to decide if we wanted to do an amniocentesis today or schedule for later. We did come to conclusion to have it, but my bladder was being super impatient with us. I did empty it on my way in to the exam room, but it filled up fast! When I came back from the bathroom we went ahead and did the procedure. They said I did great, but I'm sure they say that to everyone. I stared at Paul the whole time. The actual procedure was not that bad, but I really wish I had read up on it more and been more prepared for the 'pain'. We will get some results this week and the rest back in about 2 weeks.
Our paperwork was already sent to the cardiologist and they will be calling in the am to schedule an appointment. We have done lots of research of not only the preliminary diagnosis but also hospitals. I love Charlotte, I really do, but do I want the #46 hospital on the list? CHOP and the hospital in Atlanta are ranked in top 10. So is Boston and LA, but I don't know that those are even an option for us.
In addition to the hospital research, I have been looking for organizations for support. Congenital heart disorders are the number 1 birth defect. How did I not know this? Maybe I knew it and it didn't sink in, but don't worry, it's sunk in now! One of the organizations Fetal Health Organization got back to me immediately. I mean like I sent the "contact us" form and maybe 30 minutes later I received a personal message from a board member. He asked more questions and when I responded, he in turn offered his support, knowledge and three of the top hospitals and Dr's out there. He even offered to set up a phone call with one of the Dr's in Cincinnati. Now that folks is a good support system.
Speaking of support systems...We were able to tell our parents tonight. Paul's parents were devastated, as are we, and gave us the support they could. We know they are praying for us and loving us from the North. Getting a hold of mine was a bit trickier, them being on a cruise and at sea all day. We finally spoke about 11 pm and my dad had to be a dad and tell me they were coming home, even though I said there was nothing anyone could do for now. I hate that they are cancelling their trip, but I love them so much for coming home to take care of us, love on us, support us and whatever else we are going to need in the next few weeks of waiting for more information.
So my dear readers, friends, co-workers...how many tissues have you used? I feel confident in saying that we have used a case over here in the past 9 hours. I am sure many of you are just heartbroken with us, some of you have been with us on our long journey that began last fall. At this time, we ask for love and prayers. Lots and lots of prayers.
I know I've asked a lot from you in this journey, but my dear sweet co-workers, please no pity looks! And no talking during school...seriously, I can only handle 7 year olds and younger at this time. Really...I have to be able to focus on them, love them and teach them and of course not let them know what's going on for now. I don't know what our future holds, but I do know that I love this class and want to make it the best year I can for them!! I know some of you are shaking your heads at me right now...yup I can see you, but this is who I am. Teacher till the end, kiddos coming first.
I love you all sweet friends. Thank you for allowing me to share our journey with you and allowing me to just be me, judgment free.
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