Blog Archive

Saturday, February 24, 2018

Fog and Sunshine

When we learned that she would need surgery, our first concern was how we'd share the news with Elizabeth.  She's been through so many surgeries and procedures and knows the reality of a painful recovery.  We both felt at peace about simply giving her the basic facts and not filling in too many of the harrowing details for her mind to dwell on, but were praying about the right timing.  Well, we've already seen our prayers being answered!  Early in the week, Elizabeth asked out of the blue if we'd gotten the results of the pulmonary stress test she had in January. 

That was the open door I needed to tell her that in fact we had! I shared that we might have an explanation for her low energy and stamina. I shared that her oxygenated blood isn't all getting to the correct side of her heart and by God's providence there is an expert at Columbia who can correct what needs to be fixed.  She was excited about the fact that both of her heart surgeons are Lebanese, but was not convinced that the surgery would give her more energy. In fact she argued that she might still want to be "couch restive", her word for just chilling on the couch instead of being up and active. HA! She keeps me on my toes, but that peaceful conversation and her calm response were pure grace.

This was one of many moments this week when God showed us that he is going to care for us and faithfully lay down the path before us one step at a time.  

"The Lord Himself goes before you and will be with you;  he will never leave you nor forsake you.  Do not be afraid; do not be discouraged." ~Deuteronomy 31:8

Though my heart feels at peace, my subconscious is clearly working on things because I'm foggy and exhausted! All I want to do is veg and binge watch Net-flix. Sigh. But that clearly wouldn't work for our school curriculum, so mid-week I did what would be good for my body and soul and joined our little crew for our Homeschool Running Club's 5K!



These mamas show up every week with their kids (babies and toddlers too!) to run with the girls and me at Riverbank State Park.  Over the past 6 months we've gotten stronger and even Elizabeth has worked her way up to jogging a mile! This is HUGE for her! On Wednesday we took advantage of a 70 degree day to walk/run a 5K along the Hudson. As we wait for surgery, we so appreciate diversions like this! 


We are so grateful for friends and sunshine and all your support and prayers. 
Goodnight Friends.

Wednesday, February 21, 2018

Elizabeth's Heart

For those of you who are subscribed here, you received an unexpected post a few days ago. *Someone* must have hijacked our account because it was a surprise to me too! However, it was the nudging I needed to share with you the latest news about our precious Elizabeth Joy and that mighty heart of hers.

Two years ago during a screening for pulmonary hypertension, we learned that Elizabeth has a Partially Anomalous Pulmonary Venus Return. Translated for the rest of us that means a few of her pulmonary veins are improperly connected to the right side of her heart instead of her left side.  As a result, she's not getting enough oxygenated blood where she needs it and the right side of her heart is having to work too hard with all that extra blood.

In 2016, the effect on her heart and life was not great enough that the risks of corrective surgery were warranted.  However, in a follow-up cardiac MRI in January, it was obvious that her right heart is now enlarged enough to be problematic. In addition, any added increase in her overall blood pressure is extra taxing on her already compromised liver, and increases the risk of even greater problems down the road.

At the team's urging, we have scheduled Elizabeth for cardiopulmonary bypass surgery (open heart) on March 21.  We are processing the reality of that, grieving the fact that our brave girl will have to endure yet another painful surgery and recovery period, and at the same time marveling at how God has already made a path of peace ahead of us here.

*Because of Matt's career path, we are again being cared for by world class doctors at a world class Children's Hospital, attached to Matt's hospital (Columbia won't mind if I call it that, will they??)

*In the two and a half years that we've been here, we've developed an incredible community of friends and neighbors willing to step in and fill the gaps.

I will continue to post updates here, so feel free to subscribe if you'd like to know the latest.

Now, as we began in May of 2005, so we continue...We ask for your prayers for our dear girl.  We ask that her heart would be healed, that her doctors would have the wisdom and expertise they need, that her emotional heart would be protected from fear and that once again, we would see our faithful God weaving a beautiful story out of these painful threads.

All our love,
Sara