this heart broken

the story of Zoe Marie

This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.

Archive for October, 2006

If only it were so simple…

Saturday, October 28th, 2006

Noah watching me give Zoe’s medicine….
“Are you giving Zoe her medicine?”
“Yah”
“Oh, good, she’s all better now”.

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Friday, October 27th, 2006

I heard from Children’s today and her CMV levels are low enough they feel they can remove her central line.  They’ve contacted the surgeon and are hoping to schedule it on Wednesday!  Her level came back at 540 (originally she was at 700,000) and as long as she stays below 10,000 she will be off […]

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Friday, October 27th, 2006

Zoe’s clinic appointment on Wednesday went well.  They are now planning to have me come in only one day a week!!!  Yah!  So now I will go in on Wednesdays but the appointments will probably be pretty long.  They called yesterday with her lab results….they are still having to change her main immunosuppressant drug level […]

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Monday, October 23rd, 2006

We’ve had a few more appointments since I last posted. Everything is looking fine. Zoe gained another 6oz since last Monday! She’s actually grown out of her 0-3month onesies which is encouraging. Her low grade fevers have been gradually going away and so we’re pretty optimistic they don’t mean anything is […]

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More weight gain and a new medicine

Monday, October 16th, 2006

Took Zoe in today and she gained a whopping 6 ounces since last Wednesday!  She now weighs 9lbs 6oz.  They’ve also started her on Magnesium supplement because her levels were very low last week (the medications she’s on can strip Magnesium out of her body).  I’m hoping this is temporary and that the low levels […]

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Weight Gain

Tuesday, October 10th, 2006

Yah!  Zoe gained a little bit of weight over the weekend so they’ve put off putting her nasal tube back in.  As long as she keeps gaining we’re okay.  She’s really done well with her oral eating.  However, I discovered yesterday that if you put too much in a day with her she drops WAY […]

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Saturday, October 7th, 2006

We survived our first week home. I won’t bore you with the details but it was a rough one. We don’t have a nanny anymore because Noah just wasn’t really connecting with her so he spent the day at Jen Zug’s house while I was in the hospital.
Zoe had two checkups with echos […]

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