Out and About...
At the Pediatric Cardiologist.
Last month we learned that Squishy has a complete AV canal defect. There is a hole in her heart between the lower chambers. There is a hole in her heart between the upper chambers. And instead of having two heart valves? Squishy decided it would be more economical to go with one. All this excitement means Squishy will require surgery. Open heart surgery.
I don't know if I have ever heard more terrifying words.
The bright side is the cardiologist told us we were the best case scenario for what is a poor diagnosis. Instead of requiring immediate surgery he felt confident we could push the surgery back until this summer when Squishy and her heart would be bigger and better able to handle the procedure.
We had a follow up exam on the 13th, to continue monitoring the situation, complete with an ekg, and an echocardiogram.
The news is even better this month. Her heart is doing amazing things. The cardiologist was so excited he took us to a room so we could see the ultrasound and understand exactly what was going on inside her chest. The hole between her lower chambers had an extra flap of skin around it last month. This month the flap of skin has turned into a funnel shape, channeling the large hole down to a tiny pin prick. It would take a single stitch to close. If this were her only issue she wouldn't even need surgery. Her one heart valve? Her one valve is bent and functioning as two separate valves. There is minimal leakage. He said the amount of leakage we are seeing is what they would expect to see AFTER a successful repair. Go Squishy. She still has a medium size hole in her upper chambers, which will require surgery. Surgery that they anticipate needing when she is two or three years old.
YEARS!
The cardiologist had never seen a heart do so well before.
I was so happy I could have kissed our cardiologist. He was so happy I think he would have let me kiss him. Celebrations were definitely in order.
It was all good news.
It was a good day.
A very good day.
What wonderful news! My daughter has a repaired heart and I remember the dread I felt when we were told she needed open heart surgery. Squishy is looking so healthy, I wondered if she did not have a heart defect (as I know many DS kids have) but I'm so glad she can wait a good long time for surgery.
ReplyDeleteI'm pretty sure I've never left a comment before (I keep trying... but bloglovin website won't let me for some reason). I've followed you off and on over the years (You might have been one of my knitty.com forum secret knitter present giftees WAAAAAAAAY back in the day... like 2005 or 2006 I can't remember). I love that you call her Squishy. My 3 year old daughter's nickname is Squishy too!
ReplyDeleteI was almost crying in this post when you said your little Squishy would have to have open heart surgery. I'm SOOOOOO glad to hear that her little squishy heart is doing so well and that surgery has been pushed back for YEARS. So glad. My little squishy had to have some dental work done and had to be put under anesthesia and watching her scared little face as the medicine took effect was so traumatizing to me and she wasn't even being opened up at all. I cant imagine the type of fear you both must have gone through. I'm like all emotional over here because I'm SO VERY HAPPY that your little Squishy is doing so well and that you and The Greatest are her parents. She's so precious and I love her and I will never meet her. Take care, Tara
That's WONDERFUL! :)
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