Wednesday, January 9, 2013

first appointment with the cardiologist

our heart girl!

Phebe had her first appointment with the Cardiologist at CHEO today. She had three tests - a chest x-ray, an ECG and an Echocardiogram.

The somewhat short version is that Phebe has a 5mm (medium sized) hole (vsd - ventricular septal defect) in the lower chamber between the left and right ventricle of her heart. Unfortunately, the blood escaping through this hole is causing her heart to be enlarged.

Right now, it is hard to gage these results, because we have no medical history or past tests to compare these results to. Was the heart originally larger and is it decreasing in size as she grows? Or is it the opposite, is her heart becoming more enlarged as she grows? Those are the questions right now. If we knew the answers, the course of action would be a lot more straight forward.

There is a test they could do, an MRI of the heart, to figure out the amount of blood escaping through the hole, however, that would mean our little girly would have to go under a general anesthetic... and the Dr said, even though this would help him figure out what was going on, there is a high possibility that (after that test) she will need the open heart surgery anyway. So he is hesitant to know if this is the best option. He doesn't want to have to put her through any more extra procedures, especially ones that involve a general anesthetic. And especially since, as of right now, the open heart surgery is a high possibility.

Anyway, all that said, he feels Phebe's case is a little tricky and has decided to take her file and present it at a board meeting on Friday. This meeting includes 5 other cardiologists and 2 cardio surgeons. He wants input from other cardiologists in order to make the right decision. I am thankful that he is a smart man and wants the best for our girl, enough to get other educated opinions before making a decision. And I know that God is in control and Phebe is in the best hands and care possible.

For a 2 year old with a vsd, Phebe is growing very well. She is in the 75th percentile for height, she went from the 5th percentile to the 25th percentile for weight, in just 7 weeks! However, unfortunately with her sickness over the holidays she lost a fair amount of that weight gain. But the good news is, she can put on weight and it's only because of her two years spent in the orphanage that she was 'under target' for weight. The other good news is that she has no outward effects of this vsd at all, no blueness, no loss of breath, etc. and for that we are very thankful. However, there are issues that will transpire if her heart continues to enlarge - these issues would manifest themselves more when she becomes a young adult.

The Dr also mentioned that having the surgery at an early age would be better - she wouldn't remember much, recovery and healing would be easier and her scar would disappear before she becomes a self-conscious teen! Not that I can ever imagine Phebe being self-conscious, she has such a beautiful happy easygoing spirit. At the end of the day, we want Phebe to have the fullest life possible and if that means having surgery, well we are at peace knowing we will have done everything to give her that.

Anyway, that's as much as we know right now. Dr Wong will be calling us on Friday to let us know what conclusion he and the board members have come to and we will move forward from there.

our heart girl! our heart girl! our heart girl! our heart girl!

Peace I leave with you; my peace I give you. I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid. John 14:27


  1. Jill,
    Do you know Julie McDonald? Linking her blog here for you.. Her little Ellie is at Mayo right now.. I think the girls have the same heart SN. I am actually going to be with Julie and Ellie tomorrow. I am happy to connect you two! I am glad you got some answers, and I will be praying for clarity!

    Here's Julie's blog for Ellie:


  2. Hi Jill! I am glad that you have a good team looking at the options fro sweet Phebe. I am also so thankful that she is not showing any of the outward signs. I am assuming that is a good sign of her other overall health and strength! I will pray for discernment for the cardiologist and complete trust for y'all and healing for sweet Phebe. Keep us posted. And thank you for your comment. I really loved it and I replied to it. Big hugs to you.


  3. Jill, so glad you have CHEO to help you through this. YY has had three surgeries there (though of course nothing with her heart!) and I know it is very hard to have your child go under anaesthetic. It does sound so promising that she shows no outer effects of her condition. I know people who brought home children who were quite blue. Sending your family lots of support and love.

  4. Thinking of all of you and praying for wisdom for all involved as you seek the best possible care for your beautiful girl.

  5. Jill,

    Amazing that Phebe is in the 75% for height! She is as cute as can be!

    This is exactly what Tia had - she had her surgery in China (and we think alone which would account for the night terrors she had for her first 3 years home! and her need to sleep with us alot!)

    Soooo thankfully whatever happens with Phebe she will have her Mama & Baba there with her! I am praying that the hole closes on its own! Our God, well he can do anything!!

    xo ellie

  6. I am glad, that, despite her condition, she is thriving and doing so well. We have great medical care in this country of ours and she will get the best care! In our last travel team, there was a little boy with a severe heart condition who has now had open heart surgery and is now thriving and doing extremely well. Phebe is in the best of care!

  7. So glad someone gave you the link to Julie...been praying for her girl, and will pray for yours. So good she is thriving in spite of her heart condition.

  8. Jill, I have complete faith that Phebe will receive the best care possible. It sounds like she already is (!!) although no surgical intervention has yet occurred. I've always been grateful for our health care here in Canada but especially so since Ren had his surgeries here. I know it may not always be the same for adults but I believe children get the very best treatment. And what a relief to know that she is thriving despite her condition. Whenever surgery comes, you will know that she is going to go into it very strong already.

  9. I can see her growing Jill....getting so big :) Great to see.

    I'm praying that you know which direction Phebe will go in soon. Know that you are in the best Hands possible.

  10. Jill, is there any possible way you can contact the orphanage and get a copy of any previous ECHOs she may have had? I know of a case where a family was able to get needed medical files post-adoption. Praying for little Phebe that the right decision will be made and the surgery will be a success if it is done.

  11. Our daughter, who we brought home from China in 2010, had the same exact heart condition with even the same sized hole. The surgery to repair it was a total success and she only needs to see the cardiologist every few years just to check the scar tissue. I was told that in terms of heart conditions, this is the easiest repair. We will pray for Phebe and for the rest of you too!