Friday, February 5, 2010

The report and now we wait ........

I am so sorry to have left you all hanging. The past few days have been unreal to me. My husband and I have been in such a state of shock and confusion. You are never ready to hear that your child has to have heart surgery, but I would have thought I as Zeb's mother would have noticed something different, or some kind of sign. At his last 3 month checkup, Dr. Lucas was amazed at how well his heart was doing and had even talked about putting us on a 6month plan at this check up if everything looked the same. So needless to say we were completely caught off guard, shaken to the core when Dr. Lucas gave us the report.

The visit started out normal like they all do, most of you guys know the routine. Zeb was loving his sucker and watching Mickey Mouse Clubhouse and laying there like a champ during the echo. I myself didn't notice any change on the echo, but I am not a Dr. or Cardio echo tech.  Then we are sent back to the exam room to wait on Dr. Lucas. It was at least 30 minutes in the room and I started having this sinking feeling, and I told Sonny, "Somethings wrong". He immediately got very defensive and said " No, don't be negative, they are just busy". I as his mother and as most mothers do, have that Mother's Intuition.  I looked at him again and said "Somethings wrong." ..He just turned away from me. Well about 10 minutes later, Dr. Lucas finally came in with report in hand and said " I am not at all pleased with his echo report today" .

Zeb's original CHD diagnosis is Critical Aortic Stenosis with a biscuspid Aortic Valve for those of you who may not be aware. He has had 2 Aortic Vulvoplasty procedures, 1 at 4 wks and 1 at 8 wks and by God's Grace he has not had to have any more procedures.

The echo showed that the leakage in the valve had greatly increased, his pressure gratient had increased about 30 points which indicates more stenosis and he has regurgitation in his mitral valve and it has caused some thickness along the valve. I don't remember it all word for word, because I was in an emotional breakdown and drowning in tears. Dr. Lucas said that he was amazed that Zeb had not shown any outward signs, as in playing less etc. To prove to Dr. Lucas Zeb was being his regularly rowdy lil boy self in the exam room and he had to get his nurse to take him out to blow bubbles so we could finish our conversation.

He said it was definately time for intervention and he would send the report to MUSC, Dr. Bradley and his surgical team to review. The good news was (according to him) that Zeb's heart look like it would be a perfect candidated for the Ross Procedure.  He said that he felt like they would want to get the surgery scheduled as soon as possible in his opinion. He did say that Dr. Bradley may have a different opinion and say let's wait 30 - 90 days but he didn't think so. He said they may call us this week with the plan but most likely it will be next week. So in the mean time we wait. I know this is a brief update, but I will update more later. I just wanted to let you know what the Dr. said. I really appreciate your prayers and love and support.

We are just trying to grasp the things that has been literally thrown at us and the shock we are in. We want everything to remain as normal as possible for our children and try to function normally. It is very hard as I cry at the drop of a hat and I have anger right now, I know you Heart Mom's understand.

Thanks for being here for me. I love you all.



  1. I've been thinking about and wondered how you were holding up since your last post.

    I know it is so hard and we are never ready to hand our babies over. Try not to beat yourself up for not noticing anything wrong with Zeb. These kids are pretty good at masking problems.

    I am always here if you need to chat, vent or just need some words of encouragement!

    Stef, Ryan, Wyatt and Logan

  2. Rhonda,
    Jess told me about the appointment the other day, and I've been praying for your family even more since then.

    I know hearing that "S" word is never easy, even if you know it's coming eventually. It's hard. It's really hard, and there's nothing I can say to make you feel any better. If you want to talk or cry...or need anything at all, give me a call. Please try not to beat yourself up over not noticing any changes in Zeb. He probably didn't show any for you to miss. You're a great mom. Don't let that get you down!

    Know that all of you and will continue to be in our prayers.

    Big, BIG heart hugs and PRAYERS,