Wednesday, September 5, 2007

Totally Terrified

It was decided on Tuesday that Noah needs to go back to the Cath Lab to have his Aorta ballooned....... I kind of suspected it in the deep dark recesses of my mind. The place I wasn't willing to listen to but sensed was there. But when they told me Dr. Pietra said Cath Lab, I still cried. Allison was off that day and Dee Dee had to tell me. She wasn't able to feel his pulses in his feet or his groin and with all the additional symptoms (blood pressures and O2 sats etc.), Dr. Pietra didn't even need to see his recent Echo to know his Co-Arch was getting worse and it needed to be fixed.

Dee Dee didn't know how terrified of the Cath Lab I am since I haven't been able to work with her since we first got to Denver. So I told her how I was feeling and that I needed her to explain to me how important it is that we do this and that we do it now vs waiting. Her response is that its getting worse and fast. While there may be risks involved (tearing a whole in his heart or ripping the Aorta or even weakening the area that is ballooned which eventually leads to a rupture) he would die without it. So he may die fixing it, but he will definitely die without it.

To explain it better, his lower half isn't getting enough blood because the part of his aorta that was sewn to the aorta of the new heart is too tight and narrow. His heart is working harder to push blood through the narrow part so his heart muscle is getting too thick. And, the blood pressure to his head and upper part of his body is too high. So he's getting bad headaches and his lower body isn't getting enough blood to heal (the villi/stomach problem, his kidneys due to the immunosupressant drugs, his horrible butt rash (which I know believe to be a bile burn, Thanks Jenny!!)). So I have a very upset, cranky, sick, and unable to sleep baby but who is also the CUTEST little bug I have seen since Lilly was little. Man... I have no idea what genes my kids are getting but they sure are cute! (I'll post new pictures as soon as I can get the Internet loaded back onto my laptop which has an SD reader. My work computer doesn't have one.)

So, the current plan is Friday at 230pm. But I am praying that at Clinic tomorrow they will have changed their mind and decided its not necessary. Otherwise, they are hoping to get him in even sooner so who knows. All I know is that I am so scared I have been sick since yesterday. I have faith that my Heavenly Father will bless my baby. And I still believe that now is not Noah's time to leave this earth. But I am still frightened at what can happen. At the pain my baby has to bear. At the possible bad news I will have to hear. I've never gotten good news from a cath visit but it has almost killed my sweet precious son. But somewhere in my heart I do feel that this will be the last step toward his recovery. That once this is fixed he will be able to finish his healing and start on his new road of life. I just need to let myself listen and feel it and not be afraid. But for now, I'm still praying..... and HARD.

Please keep him in your prayers. They helped before, they will help now. I will never be able to fully express my gratitude to my family, friends, and even the people I haven't met yet who have prayed for my little man. Please know that you will always be in my prayers.

Much Love,


  1. We will be praying. He is going to be strong, I know it!

  2. Crystal, We are praying so hard that this procedure will go smoothly and he will not have to endure and more of these and can gain his health and come home to Utah. Your whole family is on the prayer roll now. We love you all and are so blessed to have you as wonderful friends! I wish I could do something more. Just know I'm here if you ever need to talk or vent or anything! Love: Jen

  3. I'm new to your blog, I'm sending blessings your way.


  4. Crystal,

    Noah must be one strong spirit to be given all of these challenges. I don't know why Heavenly Father gives us these trials..especially to our babies. I do know that he loves our baby boys and he has a special mission for each of them.
    I will be continually praying for Noah. He is so strong and so stinking cute!! We love your family and can't wait to meet you one day!



Thank you for commenting. I love hearing from you!

Related Posts with Thumbnails