Monday, May 3, 2010

Quit playin' games with my heart...

EDIT: I killed the video that was here cause it apparently plays random ads whether you want it to or not. No real big loss, I should think.

So, there's been a purposefully distinct lack of posts on our blog lately. It mostly has to do with the fact that the all consuming issue in our lives has been one that's not too fun to talk about. So, let me just get right down to it. After our first ultrasound, the doctor found a collection of fluid on the back of our son's neck called a cystic hygroma. This, we've mentioned before. This caused our OB to refer us to a perinatologist (fancy word for a guy with a better ultrasound machine and a little bit more of a specific knowledge on fetal developmental problems). Shortly after our last blog post, we had our visit with the specialist to which he determined that in addition to the cystic hygroma, our baby seemed to have some heart issues, what looked to be a smaller heart chamber than normal. He posited that the two symptoms were caused by something called Noonan's Syndrome. This caused the perinatologist to refer us to Primary Children's Hospital in Salt Lake City where we would have to receive a fetal echocardiogram (fancy words for an ultrasound that specifically focuses on the baby's heart). About two weeks later, we're up in Salt Lake where we receive the news of why our baby's heart chamber was smaller than normal. It's something called hypertrophic cardiomyopathy. Essentialy, the tissue of the heart is growing more rapidly than normal, causing the walls of the heart to be thicker than usual. Thus, the chambers of the heart are smaller than normal. Worst case scenario: The tissue continues to grow at a more than regular rate, thereby closing off one (or more) of the chambers of his heart. Hypertrophic cardiomyopathy, we were told, is consistent with Noonan's Syndrome, though at this time it is only the best guess the doctors have. This is the latest report.

So. How are we doing? We are doing well, so long as we don't have to talk about what's going on for any extended period of time. Otherwise, it has been extremely hard on us for a number of reasons (not all of which I care to mention here). We're trying very, VERY hard to put our trust in God at this point. There's really nothing we can do but hope and pray for the best, so that is what we do. We're scheduled to head back up to Salt Lake for genetic counseling to see if either of us are carriers of Noonan's, as well as another appointment for a fetal echocardiogram. Additionally, our delivery location has been moved up to the University of Utah/Primary Children's in case our son needs to go to the ICU shortly after birth (quite likely). I'll reiterate: We're trying very, VERY hard to put our trust in God at this point.

My employment situation has been up and down a lot lately. I could seriously write another blog post solely dedicated to what's happened in the last month on this front, but I'll spare you the details. Suffice it to say, due to the medical issues that our baby faces, we've decided that it would be much better for us to stay in Utah despite its lack of educationally-related job opportunities lately. It just seemed like a better decision to stay close to our family and close to doctors that already understand our current situation. So, keep your fingers crossed that something shows up in the area.

On the matter of our garden, our cucumbers died. :( Not all of them, but the ones we transplanted outside took a beating when Utah decided to snow on us one more time. We have a few more indoors, but they're quickly outgrowing their starter homes. The rest of our plants we're hoping to more successfully transplant this Mother's Day weekend. We'll keep you posted on how that turns out.

4 comments:

  1. oh you guys, i am so sorry! this is never an easy thing to go through. my nephew had a heart defect that was found through an ultrasound, and it was a rough thing for our family to go through. but i know that heavenly father is watching over you and your baby. i will keep you guys in my prayers. just know that i love you and that your little guy is so lucky to have you for parents! hang in there, keep praying. let me know if i can ever do anything!
    lots of love, meg.

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  2. I can sympathize with you. My son is 26 and has Noonan Syndrome. Although he doesn't have the heart problems that your unborn child has, you should know that a wonderful journey is about to unfold. Please check out noonansyndrome.org Here you can find others who have experienced your childs condition (and there are many) and let you know what to expect. While I understand that at this time it is difficult to keep the faith, you will find that all of us with Noonan children haved learned more from our "noonies" than our other children. And that God has chosen you as special parents that can meet the needs of the child as well as giving you a special child.

    May you find comfort in your prayers.

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  3. Oh goodness, I am so sorry for all three of you! I will remember you in my prayers.

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  4. Thank you for the update - it wasn't easy I'm sure. I love you three so much and will continue to keep you in my prayers. Wish I could be there to give you hugs in person, but hope you can feel the hugs I'm holding in my heart that will be delivered in July. Hang in there!
    Love, Alicia

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