Thursday, August 29, 2013

Ava Jane's Heart Update

Well, last week Adam and I took Ava Jane to Children's Hospital for her Cardiology Checkup. We had been praying for months leading up to it, that she'd be able to come off her blood pressure meds and that her bp would be in the normal range.

We absolutely love her Cardiologist, Dr. Bornemeier, she is excellent! She couldn't believe how big Ava Jane had gotten or how much hair she had, which almost everyone comments about. After looking at her and seeing her four extremity bp's she said "I am very pleased", which was quite encouraging to Adam and I.

We took her down the hall to have her Echocardiogram and let me just say, SHE.DID.NOT.LIKE.IT! She was like a crazy lady, we gave her i-phones, cars, pulled the TV screen down close to her face but SHE.WAS.NOT.INTERESTED in Curious George, she was completely over it!!
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It's a good thing she finally found that thumb, she was making quite a scene!
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They were able to get most of what they needed and from what they saw she looked "good". The gradient of her blood pressure which was a 10 (on a 1-10 scale, with 10 being the worst) back in November when all of this story began, but as of last week she'd moved to a 5 which is a HUGE praise! Dr. Bornemeier said she wanted to try taking her off her bp meds and that she wanted me to take Ava Jane to All For Kids in a week (which was Wed.) and have her bp read.

Her bp was 88/54 which is really good! We feel such answers to prayers so "thank you" to all of you who have faithfully prayed for her and our family over the past nine months! God has certainly heard us and has granted our requests!

I waited to write this post until today because I wanted to see how the blood pressure reading would go and see if I heard back on her DNA testing. I knew I was going to be calling the Cardiology Clinic to tell the nurse what the reading was and I was hoping to find out if the lab work was back from the DNA test. I was hoping today would give us the long awaited answer we've been wanting and that it'd be the closing of this part of her story. Unfortunately the waiting continues.

I feel like the DNA findings will either be closure on this chapter of Ava Jane's story or it will be the start of another. When Coarctation (which is the Congenital Heart Defect that she had) occurs in females, then 50% of the time there can be another issue called Turners Syndrome, which is a chromosomal defect. Not all Coarcs have Turners Syndrome but all Turners Syndrome kids have Coarcs, and Turners Syndrome only effects females. We had to wait this long for the DNA testing because she had to have a blood transfusion after surgery and they couldn't test that blood or else the test would be inaccurate since it's someone else's blood, so we had to wait for it to completely circulate out of her body. I called today hoping that I'd hear an answer only to find out that the DNA testing takes the better part of a month to get back. STINK! So I will be "that" Mom who calls every 2 weeks until we get the results, simply because I'm ready to know and Dr. Bornemeier assured us that, "knowledge is power" and in this scenario, knowledge is certainly powerful and I'm ready to know! There's nothing about her physical traits that resemble "Turners" but Adam and I would still like to know either way so we know how to proceed.

So we continue to wait, knowing God already knows either way, and we're confident knowing that Ava Jane rests solely, smack dab, in the center of His hand, and there's no better place for her to be! He has been her Jehovah Jireh, her Provider, and He'll continue to show Himself faithful as the rest of her story unfolds.

Thanks again for praying for our sweet girl! She is a doll baby and we are thrilled with how well she has done over the past months. It's hard to believe she is almost a year old, we're in the throws of planning a very girly soiree, I can hardly wait!
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I can not believe 11 months have come and gone!!
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2 comments:

Tales from Goshen said...

I'll be praying for a good result on the DNA test. Just remember, don't worry about tomorrow - today has enough of its own stuff to keep us occupied and trusting. And always remember how faithful God has been through all the major things Ava Jane's faced. Your faith and steadiness is such a testimony to God's outpouring of grace on you, Courtney. I'm so happy to have gotten to know you via the nursery and I look forward to watching Ava Jane continue to grow and thrive!!!

Linds said...

sweet baby girl. She is beautiful (and turning blonde!?!). Continuing to pray that everything comes out clear. Love you friend-- hopefully we can catch up soon!

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