04 February, 2014

Jovie's heart

Yesterday was Jovie's Cardiology appointment. They did an EKG, and Ultrasound among other tests. From these tests they said Jovie's right and left ventricle are one, without a separating wall.  A normal heart has four separate chambers - one side for blue blood and the other for red, her heart has the oxygenated blood mixed with the unoxygenated blood together. 

She is also missing her pulmonary artery that goes to her lungs. This never formed at birth and her body has had to find a way to survive without, but it is not enough for her to sustain life and will continue to worsen.

Her oxygen level was 66 today and they took it again and it was 69. A normal heart should be at 100 so this is very very low.

We will have to go to Egleston to do a catheter on her to be able to tell everything before they can plan for her surgery. When they do that she will be fully asleep and they can draw blood, and do an extensive ultrasound as well. After the catheter her case will go before a board of 20 doctors to discuss the best possible way to go about helping her. This will not be a one time fix and we have to move on this very soon, the doctor said that from where he's sitting he would emit her into the hospital today but wants to try to give her a few weeks home. He told us to anticipate open heart surgery in the next 3 months. 

This news is overwhelming and I cried for most of the day yesterday and even writing this I realize how I knew all this from the beginning and I should have been prepared. But how can you prepare your heart for something like this? There just aren't words I can put for all the emotions we are feeling. I'm just so heartbroken and scared for her.  Our precious child will have to go through so much and I'd really hoped she could have more time with us before she had to. 

Yesterday was also two weeks since we first met Ian and Jovie. We are still learning each other and growing together as a family. These things don't happen immediately... But as they are growing to trust us more and more it's amazing to watch each of their personality coming out. For a year we longed for them and now we get to know them - I am so humbled God made them to be our children, and that we get to learn their every freckle, their fears, ticklish spots, and likes and dislikes...

We are still struggling to get much sleep through the night with them waking up crying - this morning was another 4am start to the day and I was worried we'd have trouble getting to our 8:50 doctors appointment - well I think we had enough time to get ready. 

I love these pictures of Ian and Jovie playing in our pantry. I love seeing the interactions between our children. I can't wait until all three have really bonded together as brother and sister. 


  1. Oh Kristen, Know this is the news you knew you'd probably get, but were hoping it wouldn't be so bleak. I am sorry and will keep Jovie and her precious heart in my prayers. The good news is that the surgery will be a time she'll be dependent on you and Cody even more, she'll truly learn that you are there for her and what a mommy and daddy do for their children. Prayers!

  2. enjoy these precious days of getting to know each other. I know that love and trust are growing stronger every day! I will keep sweet Jovie in my prayers and pray that God's sweet mercies are poured down onto her, (and all of you) every single day. Lily loves the pictures. She wants to be a jiejie, just like Mae! I keep reminding her that she is the meimei at our house :) Sending love to you all. xoxo

  3. Oh sweet baby girl! I can only imagine how hard this is for you and all of you to prepare for. I know God has her in His loving arms and will protect her - praying for you all!

  4. Hi Kristin and Cody, I am sad to learn of Jovie's report. I know that you are heartbroken-knowing all she will be going thru.My prayers are with you all and the Doctors who will look after her.What beautiful children!I enjoyed seeing the pictures of them playing and bonding with Mae.Love to you all,Aunt Joyce xoxoxo

  5. Praying for you guys and for Jovies upcoming surgeries.

  6. Bless your heart sweet friend! I thought as I saw her pics in China that her lips were blue and probably surgery would be soon. I've been there with SJ. Three days home and we were swept into Egleston to open heart surgery. I am here if you need me!!! God is faithful and HE has the plan. He chose you as her mama because He knew you could love her to health. That is my prayer and I stand in the gap for you!!! XOXOXOX


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