Visit to the Cardiologist
This morning Emerson had her follow-up with her Cardiologist. We haven't seen him now for 3 months since he dropped the bombshell that he suspected William's Syndrome. Needless to say, I was not looking forward to this appointment. Three months ago, I very unsuspectingly took my daughter to see the Cardiologist to check out what was supposed to be a benign heart murmur. I went by myself and was very unconcerned. At this appointment I gave him Emerson's history: interuterine growth retardation, low-birth weight (5lbs 1oz.), poor eater, slow weight gain, severe reflux, severe colic, and now heart murmur. He asked me if Emerson looked like my daughter at this age (being in the health care industry I know why people ask that question and I started to get a bit nervous). Looking back I think the Cardiologist knew even before the examination. Anyway, we completed her echo and she had mild pulmonary stenosis and very mild stenosis of the aortic arch. The MD than told me that he suspected William's Syndrome. I handled him explaining the news to me like a champ and then when he walked out of the room I broke down. It's hard to explain getting news like that on your precious, innocent, beautiful baby. You just feel like your heart is being squeezed. I remember leaving thinking this doctor didn't know what he was talking about until I got home and got on the internet and saw her face staring back at me in the pictures of other babies with WS and then when I read the features there was no more doubt. Thankfully the FISH test came back only 5 days later so we didn't have to be tortured with the wait. Boy, that seems like years ago, but it's only been a few months.
So now we are back 3 months later...her current report is basically her heart sounds good, but she has very high blood pressure (120 upper, 100 lower) which is obviously concerning. They also suspect that she may have a double aortic arch, they think they saw it on a previous video swallow study. She is going to have a MRI under general anesthesia at the end of November to get clear pictures and come up with a game plan. From what the Cardiologist explained, if she has this double aortic arch they would likely need to correct it in the next couple of years before it tightens around her trachea and esophogus. Yikes... All we can do now is wait and try not to worry...easier said than done.
So now we are back 3 months later...her current report is basically her heart sounds good, but she has very high blood pressure (120 upper, 100 lower) which is obviously concerning. They also suspect that she may have a double aortic arch, they think they saw it on a previous video swallow study. She is going to have a MRI under general anesthesia at the end of November to get clear pictures and come up with a game plan. From what the Cardiologist explained, if she has this double aortic arch they would likely need to correct it in the next couple of years before it tightens around her trachea and esophogus. Yikes... All we can do now is wait and try not to worry...easier said than done.
posted by Nicole | 6:06 PM
5 Comments:
Oh Nichole not a fun place to be but welcome to heart land!!! MRI's Cath's,Echo's all sedated of coarse...where does it stop. I to fist learned of Tatums WS at the heart Doc. The Test had been done while we were in the hospital when she was four day but somehow the results failed to make it to us until she was 6 weeks, I was also alone at that visit. Reading your blog brough it all back. I know exactly how you feel.
Your story runs very parallel to ours. I understand where you are and where you have been. I still get a little sick to my stomach hearing other women like you have gone through what we have. The good news is you will likely end up with an exceptionally delightful child whom everyone adores. I am still not at a point where I can say I wouldn't change anything...because I would if I could. However, I do love Erik the way he is with all of his obsessions and quirks that go with WS and just being Erik. He's a comedian at heart and makes me laugh all of the time.
Now that you have endured the kick-in-the-stomach feeling of the diagnosis and are entering into a new world of worry, know that there is an incredible amount of joy ahead for you with your baby. I never thought that would be possible, but it is.
Hello Nicole!
Welcome! I was so excited while reading your blog, Emerson is sooooo beautiful, she has such a cute cheek!!! :)))))
I hope your blog will be a good therapy, I thing it was the best therapy for me, and I started to love these other girls here, they helped me through my bad days!
Big hugs to you, Kati
So many similarities, our cardiologist was the one to point out the WS concern as well. I thought he was a total oaf! But looking back, I am thankful for his exterptise, but not his bedside manner. Be thankful for time, because this is what will get you to a better place in gaining more and more acceptance to the nature of our lives in raising children with William's syndrome. Avery is such an amazing blessing, as is Emerson, and WS defines neither them or us - it merely changes our journey in life and takes us to new places.
XOXO
Amy
I have read this post a few times and kept coming back to comment on it, but I keep getting interrupted. Our prayers are with you this November for the extra tests. It really is aggravating to not get the answers you want and to keep wondering what will happen next. She is such a sweet little girl, she I am sure is the twinkle in your eye.
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