A bit ago we got a phone call saying that Aubrey's surgery would almost definitely be postponed beyond the originally scheduled date of August 20th. We had been forewarned that this could happen as it is not uncommon for emergency surgeries to backlog the surgeon's schedule and OR. Last week we were told that it would indeed be pushed back due to a number of patients whose health took a sudden turn for the worse.
As much as this initially sent me into a bit of a tailspin, I couldn't help but be thankful that "sudden turn for the worse" isn't how Aubrey is described. Her decline has been that-- a decline-- but it has been gradual and expected and quite honestly even slower than predicted. I am so deeply thankful for this.
The make-up date is tentatively set for September 10th. There's a possibility it will be sooner, but it's most likely going to be then. After a day or two of adjusting emotionally, I realized the multitude of ways this seems better, and I don't even see all that our Heavenly Father sees as He orchestrates our lives! Daniel will now certainly be here when our church transitions back to two services for the fall and reception of the college students back into the area, I will have the time to start our oldest 3 children on some basic schooling that they can then plug away at in my absence, we have more opportunities to show our house (which we put on the market a little less than 2 weeks ago), Daniel will have time to train up a new office assistant the church just hired for him, and I might even get the chance to swap summer/winter clothes (though right now, as we're in the middle of a 4-day high 80s/low 90s stretch, that seems almost ridiculous to think about!) before we head out. Little blessings all along the way.
Aubrey is, of course, very disappointed that she will now pretty certainly be in the hospital for her birthday (September 13), but the truth is that even if we'd made it home post-surgery by then, any celebration we would have would have been very quiet/simple. It feels like a big thing in an almost-8-year-old's world so I'm trying to have compassion for her genuine heartbreak while reminding her that the Lord really and truly does work all things together for good to those who love Him and are called according to His purpose.
Please spread the word about the surgery date, and I will do my best to continue updates here as we go. Thank you again for praying. We are comforted and strengthened daily, and it means more than words could ever say.
Monday, August 17, 2015
Saturday, August 1, 2015
Surgery
It's been quiet in this space, and largely because there is an update looming that I have dragged my proverbial feet about for quite a few months now. Somehow talking about it is easier than writing, and even that isn't easy.
But here goes.
Aubrey, who will be a miraculous eight years old on September 13, is scheduled for open heart surgery on August 20 at Strong Memorial in Rochester. This has been a long-anticipated but much-dreaded necessary course of action since the day of her birth. I tell myself I should just be glad that it's been almost eight years-- seven years and many months longer than we ever thought it would be!-- but the truth is that despite an unwavering confidence that the Lord is leading us and that this is the step of faith He's calling us to in these days, there are those few minutes every single day when I can do nothing but cry.
The surgery is technically an elective surgery. She is not on death's doorstep. Indeed, we could put it off or choose to never have it done at all if we wanted, opting instead for simply enjoying whatever days she has left. The surgeon and her cardiologists have made that clear to us at repeatedly. Yet their professional advice is that her health has declined to a point that they feel it necessary to take action, and they feel now is a good time: she is big enough that they are hopeful they'll be able to put a full-sized valve/conduit in her heart and still she is young enough to have a better chance at a speedy recovery. As we talked and talked and talked with them (they have been wonderful to the point of the surgeon, a big-wig with plenty of important things to be doing, giving us his personal cell phone number so we can call him any time with questions), we repeatedly felt the Lord telling us to, once again, make faith our friend and fear our enemy.
If this feels like quite an abrupt shift from the report in November following her heart catheterization, believe me when I say I was shocked when I read the letter in December myself. I just hadn't seen it coming. But in hindsight, I realized that although the procedure gave them confidence that she was doing okay, it also gave them more information about her heart that then enabled them to discuss with their [very large] team a more concrete plan of action moving forward. They finally reached a consensus about what kind of surgery they thought she should have (remember, her heart is so unusual that there is no standard protocol) and, with that, feeling like the risk of organ damage due to her steadily declining blood oxygen saturation was no longer worth it.
The surgery will be a very involved one. Despite their best attempts at explaining to us exactly what they'll be doing, I really only understand that they will be adding a conduit/valve for the purpose of re-routing oxygenated blood to the proper side of Aubrey's heart so that it can be more efficiently spread to her body. After that, they will patch the hole that currently allows any oxygenated blood to make it to her body at all-- a hole that has been good for her in the short-term because it's the reason she's alive at all, but not good for her in the long-term. Many of you are familiar with the idea that her heart is "backwards"; this won't really be changing as they will simply be trying to get blood where it needs to go. They have told us to anticipate the surgery taking 8-12 hours. Her recovery will most likely be 2-3 weeks in the hospital followed by another 2-3 months before we can resume life "as usual".
Since April we have been making plans. Slowly and at times with much procrastination on my part because-- I won't lie-- it all feels very overwhelming. But bit by bit, it's coming together. And, of course, as overwhelming as it feels, I can't help but feel thankful that we have the opportunity to make plans instead of having it all thrust on us suddenly.
Obviously, we deeply covet your prayers. I can't even tell you how much strength of heart the prayers of others gave me in the days surrounding Aubrey's birth. This time around, it is not just my heart that needs to be strengthened, but a seven-year-old girl's, too.
In the past weeks since we began handing out prayer cards* there has been a steady stream of emails, messages, notecards, and gifts sent to us/her that have been such a tangible expression of God's tender care. Just the other day she curled her ever-lengthening body onto my lap and burst into tears, "Why do I have to have a bad heart? Why do I have to have surgery?" Among some of the things we considered and tearfully discussed were the ways the Lord so generously pours out His love even in the midst of the storm-- and so often at the gracious hands of individuals whose hearts are led by Him.
Many, many, many thanks to those of you who have been praying, and many, many, many thanks to those of you who will be. It truly is the greatest gift you can give.
*I have physical copies of this prayer card yet available and would be happy to send them out. Please just get in touch with me and I will gladly and gratefully do so.
But here goes.
Aubrey, who will be a miraculous eight years old on September 13, is scheduled for open heart surgery on August 20 at Strong Memorial in Rochester. This has been a long-anticipated but much-dreaded necessary course of action since the day of her birth. I tell myself I should just be glad that it's been almost eight years-- seven years and many months longer than we ever thought it would be!-- but the truth is that despite an unwavering confidence that the Lord is leading us and that this is the step of faith He's calling us to in these days, there are those few minutes every single day when I can do nothing but cry.
The surgery is technically an elective surgery. She is not on death's doorstep. Indeed, we could put it off or choose to never have it done at all if we wanted, opting instead for simply enjoying whatever days she has left. The surgeon and her cardiologists have made that clear to us at repeatedly. Yet their professional advice is that her health has declined to a point that they feel it necessary to take action, and they feel now is a good time: she is big enough that they are hopeful they'll be able to put a full-sized valve/conduit in her heart and still she is young enough to have a better chance at a speedy recovery. As we talked and talked and talked with them (they have been wonderful to the point of the surgeon, a big-wig with plenty of important things to be doing, giving us his personal cell phone number so we can call him any time with questions), we repeatedly felt the Lord telling us to, once again, make faith our friend and fear our enemy.
If this feels like quite an abrupt shift from the report in November following her heart catheterization, believe me when I say I was shocked when I read the letter in December myself. I just hadn't seen it coming. But in hindsight, I realized that although the procedure gave them confidence that she was doing okay, it also gave them more information about her heart that then enabled them to discuss with their [very large] team a more concrete plan of action moving forward. They finally reached a consensus about what kind of surgery they thought she should have (remember, her heart is so unusual that there is no standard protocol) and, with that, feeling like the risk of organ damage due to her steadily declining blood oxygen saturation was no longer worth it.
The surgery will be a very involved one. Despite their best attempts at explaining to us exactly what they'll be doing, I really only understand that they will be adding a conduit/valve for the purpose of re-routing oxygenated blood to the proper side of Aubrey's heart so that it can be more efficiently spread to her body. After that, they will patch the hole that currently allows any oxygenated blood to make it to her body at all-- a hole that has been good for her in the short-term because it's the reason she's alive at all, but not good for her in the long-term. Many of you are familiar with the idea that her heart is "backwards"; this won't really be changing as they will simply be trying to get blood where it needs to go. They have told us to anticipate the surgery taking 8-12 hours. Her recovery will most likely be 2-3 weeks in the hospital followed by another 2-3 months before we can resume life "as usual".
Since April we have been making plans. Slowly and at times with much procrastination on my part because-- I won't lie-- it all feels very overwhelming. But bit by bit, it's coming together. And, of course, as overwhelming as it feels, I can't help but feel thankful that we have the opportunity to make plans instead of having it all thrust on us suddenly.
Obviously, we deeply covet your prayers. I can't even tell you how much strength of heart the prayers of others gave me in the days surrounding Aubrey's birth. This time around, it is not just my heart that needs to be strengthened, but a seven-year-old girl's, too.
In the past weeks since we began handing out prayer cards* there has been a steady stream of emails, messages, notecards, and gifts sent to us/her that have been such a tangible expression of God's tender care. Just the other day she curled her ever-lengthening body onto my lap and burst into tears, "Why do I have to have a bad heart? Why do I have to have surgery?" Among some of the things we considered and tearfully discussed were the ways the Lord so generously pours out His love even in the midst of the storm-- and so often at the gracious hands of individuals whose hearts are led by Him.
Many, many, many thanks to those of you who have been praying, and many, many, many thanks to those of you who will be. It truly is the greatest gift you can give.
*I have physical copies of this prayer card yet available and would be happy to send them out. Please just get in touch with me and I will gladly and gratefully do so.
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