Did I ever explain her heart defect? I don't think I did so here is the short version. For the long version go here. She has an AV Canal defect. Thirty to 40% of children with Down syndrome have this form of defect. Basically, she has a large hole in the center of the heart and a single large valve formed (instead of 2 different valves) that crosses the defect in the wall between the two sides of the heart. It can only be repaired by Open-heart surgery. Infants may breathe faster and harder than normal. High pressure may occur in the blood vessels in the lungs because more blood than normal is being pumped there. Over time this causes permanent damage to the lung blood vessels.
We have a date set for Harper's surgery. I'm not exactly sure I want to give it out yet because I don't know if I can handle a countdown happening in blogland. But I will let you know it's after the holidays and that I reserve the right to change my mind about posting the date!
Wednesday we were back at the American Family Children's Hospital for an Echocardiogram and a follow up with the Pediatric Cardiologist (who is not the surgeon). Harper's Echo didn't show anything different but her breathing has changed. She bobs her head and is skin is pulling at her throat. Which means that she now receives 2 medications twice a day. Giving her the medication isn't difficult. What's difficult is that they need to be taken 12 hours apart, one before each other, and I don't want to bring them to work/school with us in case I forget them there. So, I'm doing what I do best...plan and organize.
When we were meeting the surgeon on Monday Harper weighed 7 pounds. Wednesday she weighed 6 pounds 14 ounces. Nothing to be overly concerned with. This weight changed could have been because of a feeding, diaper etc. Nonetheless, the doctor wants Harper to take in more calories so we are adding more formula per water. Again, an easy change. So far I can handle this.
We have follow up appointments scheduled all the way until her surgery. We are on track for that day to come. I'm avoiding in yet counting down the days at the same time.
The surgeon did go over the risks but we focused more on the rewards and that is what I will keep focusing on. Harper and I have talks about her surgery all the time. She knows it's going to suck but that after it's done she will be healthier. She is such a good baby that I think she is trying to tell me to stop worrying that she will be fine.
Ahh enough about her ticker! I get emotional every time I talk about it. So....happy Thursday. I've deemed it a "stay in bed until I have to get out" day. Here are a few pictures to enjoy!
The surgeon did go over the risks but we focused more on the rewards and that is what I will keep focusing on. Harper and I have talks about her surgery all the time. She knows it's going to suck but that after it's done she will be healthier. She is such a good baby that I think she is trying to tell me to stop worrying that she will be fine.
Ahh enough about her ticker! I get emotional every time I talk about it. So....happy Thursday. I've deemed it a "stay in bed until I have to get out" day. Here are a few pictures to enjoy!
3 comments:
I've been where you are now. You have the right attitude - trust in your surgeon, try not to focus too hard on date until you have too, and KNOW that things will be better when its over. We still celebrate the anniversary of Cate's surgery every year and send up thanks to the surgeon & hospital staff who can do such amazing things. Best of Luck
Thanks for updating us. Many prayers and hugs to you, Andy, and Harper.
We too are waiting for heart surgery for our little girl. She has Ds, too, and has a large VSD. There is still a tiny chance that she won't need it, but trying not to hope too much.
At the moment I am just sort of trying not to think about the surgery too much, since it does make me anxious. So I recognize your feelings...
Take care!!!
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