We expected a routine appointment.
Last April, the cardiology team told us that we did not have to return for another check-up on the hole in Olivia's heart for a full year. This was music to a mom's and dad's ears!
Since her pediatrician had noticed the severe murmur in her heartbeat when she was just four days old, we'd visited the cardiologist office several times to monitor any changes in heart function. So far, it seemed that this hole was not causing any problems, and the doctors said that it might even close on its own.
The ultrasounds of Olivia's heart today revealed a different story, unfortunately. The left side of her heart has enlarged slightly over the last year, which tells us that this precious organ is under a bit of stress due to the turbulence of the extra blood flowing in and out of the hole. The first cardiologist who reviewed the ultrasounds with us today told us what we really did not want to hear: Olivia is heading down the path that requires surgery to repair the hole.
He pulled in a second cardiologist who examined her and the photos and had a different opinion as to the next steps we should take. While cardiologist #1 wants to go ahead and operate in the next few months while her heart and general health are still pretty fantastic, cardiologist #2 said that with any surgery, there's always a baseline of risk. He's concerned that the risk and trauma of surgery is not worth fixing the hole... just yet. He still thinks there's a small chance it might close up on its own, so he'd rather hold off a year or so on the surgery since the heart is enlarging at a pretty slow rate and the opening is not causing her any other problems to see if it closes naturally. Cardiologist #1 said that it's very rare for these holes to close after a child is one, so he thinks that we are just delaying the inevitable procedure.
So where do we go from here? They will present Olivia's case on Monday to a team of 40 cardiologists, heart surgeons, image specialists and experts in this field who review the files of each patient who is a possible candidate for heart surgery. We will move forward based on the consensus of this team. I feel great knowing that 40 sets of eyes will be on her ultrasounds, especially considering that even the two who saw us today weren't in full agreement about when to operate.
They explained to us today that there is a range of severity when it comes to heart operations: surgeries that do not involve bypass are on one end of the spectrum, and complex heart surgeries are on the other. Olivia falls right in the middle, meaning this surgery will involve bypass but is fairly routine and should only take about an hour and a half. She will spend a night or two in the ICU, a few more nights in a regular hospital room recovering, and then she can come home to continue recouping. (Thinking about her being in the hospital confused and scared is what shakes me up). She should be back to normal functioning within two weeks, which is a miraculously short time for open heart surgery, if you ask me!
So now we wait and pray for absolute, definitive clarity and unity among the team of 40 on Monday. It does sound probable that surgery will happen... it's just a matter of when.
I've experienced a wide range of emotions already in just the five hours since I received this information. I'm still digesting it all, but here's what we do know:
- We are so fortunate to have the luxury of determining the time to operate that is best for Olivia. Thank goodness this is not emergency surgery and she is not in major distress. It's not urgent. We can get these other opinions and take one step at a time.
- While we were surprised today, God is NEVER surprised. He saw this coming and already sees the outcome, and He's going to be with us - leading us and also beside us - each step. Amen and amen.
- This verse came to my mind today: "They will have no fear of bad news; their hearts are steadfast, trusting in the LORD." (Psalm 112:7) What this means to me is that HE is our joy. I should not let this blind me. I can (should) rest and be confident that even if my worst nightmares were to materialize, I can trust God to use that for His glory.
- I generally find Casting Crowns songs cheesy (so sorry if that offends anyone), but I heard this in the car this afternoon and think it sums it all up:
"If your eyes are on the storm
You’ll wonder if I love you still
But if your eyes are on the cross
You’ll know I always have and I always will."
Thanks for praying with us and loving our family well.
Leigh
Last April, the cardiology team told us that we did not have to return for another check-up on the hole in Olivia's heart for a full year. This was music to a mom's and dad's ears!
Since her pediatrician had noticed the severe murmur in her heartbeat when she was just four days old, we'd visited the cardiologist office several times to monitor any changes in heart function. So far, it seemed that this hole was not causing any problems, and the doctors said that it might even close on its own.
The ultrasounds of Olivia's heart today revealed a different story, unfortunately. The left side of her heart has enlarged slightly over the last year, which tells us that this precious organ is under a bit of stress due to the turbulence of the extra blood flowing in and out of the hole. The first cardiologist who reviewed the ultrasounds with us today told us what we really did not want to hear: Olivia is heading down the path that requires surgery to repair the hole.
He pulled in a second cardiologist who examined her and the photos and had a different opinion as to the next steps we should take. While cardiologist #1 wants to go ahead and operate in the next few months while her heart and general health are still pretty fantastic, cardiologist #2 said that with any surgery, there's always a baseline of risk. He's concerned that the risk and trauma of surgery is not worth fixing the hole... just yet. He still thinks there's a small chance it might close up on its own, so he'd rather hold off a year or so on the surgery since the heart is enlarging at a pretty slow rate and the opening is not causing her any other problems to see if it closes naturally. Cardiologist #1 said that it's very rare for these holes to close after a child is one, so he thinks that we are just delaying the inevitable procedure.
So where do we go from here? They will present Olivia's case on Monday to a team of 40 cardiologists, heart surgeons, image specialists and experts in this field who review the files of each patient who is a possible candidate for heart surgery. We will move forward based on the consensus of this team. I feel great knowing that 40 sets of eyes will be on her ultrasounds, especially considering that even the two who saw us today weren't in full agreement about when to operate.
They explained to us today that there is a range of severity when it comes to heart operations: surgeries that do not involve bypass are on one end of the spectrum, and complex heart surgeries are on the other. Olivia falls right in the middle, meaning this surgery will involve bypass but is fairly routine and should only take about an hour and a half. She will spend a night or two in the ICU, a few more nights in a regular hospital room recovering, and then she can come home to continue recouping. (Thinking about her being in the hospital confused and scared is what shakes me up). She should be back to normal functioning within two weeks, which is a miraculously short time for open heart surgery, if you ask me!
So now we wait and pray for absolute, definitive clarity and unity among the team of 40 on Monday. It does sound probable that surgery will happen... it's just a matter of when.
I've experienced a wide range of emotions already in just the five hours since I received this information. I'm still digesting it all, but here's what we do know:
- We are so fortunate to have the luxury of determining the time to operate that is best for Olivia. Thank goodness this is not emergency surgery and she is not in major distress. It's not urgent. We can get these other opinions and take one step at a time.
- While we were surprised today, God is NEVER surprised. He saw this coming and already sees the outcome, and He's going to be with us - leading us and also beside us - each step. Amen and amen.
- This verse came to my mind today: "They will have no fear of bad news; their hearts are steadfast, trusting in the LORD." (Psalm 112:7) What this means to me is that HE is our joy. I should not let this blind me. I can (should) rest and be confident that even if my worst nightmares were to materialize, I can trust God to use that for His glory.
- I generally find Casting Crowns songs cheesy (so sorry if that offends anyone), but I heard this in the car this afternoon and think it sums it all up:
"If your eyes are on the storm
You’ll wonder if I love you still
But if your eyes are on the cross
You’ll know I always have and I always will."
Thanks for praying with us and loving our family well.
Leigh
Leigh, I remember freaking out just because Claire had to be put to sleep to have tubes put in her ears at 8 months - so I can only imagine your concerns. Mommies and Daddies are Mommies and Daddies - it's what we do. But you are SO fortunate for all the reasons you have stated, as well as being blessed with incomes and health care and extended families full of love and support. Also know that medicine is miraculous these days and I know of one baby girl in particular who was MUCH younger and had what I think was a more serious and urgent situation - and she is fat and sassy (figuratively) and 21 years old! It is scary, but God will walk you through it one step at a time.
ReplyDeleteLeigh, your post brought tears to my eyes. You writing is so eloquent; I can feel your anxiety of the unknown, your love for precious Olivia, and your faith in God's assurances. I pray that you and John will have the clarity that you need to move forward in the process. I rejoice in the fact that you (and we) live in a place where quality healthcare is available and is SO close. (When Sara was in Houston, she assisted in a surgery for a child whose parents had brought her from Australia to Texas Children's. I can't even imagine doing that!) I'll be holding your sweet family close in my heart and in my prayers in the coming days. Lots of love.
ReplyDeleteLeigh, your post brought tears to my eyes. You writing is so eloquent; I can feel your anxiety of the unknown, your love for precious Olivia, and your faith in God's assurances. I pray that you and John will have the clarity that you need to move forward in the process. I rejoice in the fact that you (and we) live in a place where quality healthcare is available and is SO close. (When Sara was in Houston, she assisted in a surgery for a child whose parents had brought her from Australia to Texas Children's. I can't even imagine doing that!) I'll be holding your sweet family close in my heart and in my prayers in the coming days. Lots of love.
ReplyDeleteHi lovely, our prayers are with you and your sweet girl. Peace and courage and hope be yours and may you feel wrapped up in the deep deep love of the Creator x
ReplyDeleteLeigh, I am so grateful that the doctors are watching and waiting for the other Drs. opinions. I know this must be so stressful but God is watching over her.I have known many children with this and they were fine through the surgery. I will pray that the doctors know when it is the right time for the surgery and continue to put all of your fears and worries in God's hands.
ReplyDeleteSusan
Leigh, I am confident that God has this entire situation in the palm of his hands! I am praying for wisdom, guidance and peace for you and your entire family!
ReplyDeleteYou will all be in my prayers....
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ReplyDeletePraying for clarity of judgment, praying for healing naturally or with surgery
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