We bought her heart shaped cookies and ate them together in the waiting room. Smashed in close we sat, on the bench where I can still remember watching her and Beck play with the same roller coaster bead toys after our very first and very heavy appointment...
How could we have known the roller coaster we'd be getting on way back then?
She giggled in the parking lot as she held onto both Mommy and Daddy's hands...right there in the middle. It was an important day for Bea yesterday. And it will be an important year for her little life too as we blindly swing the bat once again at another curve ball.
. . . . . .
In September of 2016, as we prepared for Bea's next open heart surgery, the Fontan procedure which was to compliment the Glenn she received in April of 2015, we were thrown a curve ball when the team of cardiologists reviewing her circumstances decided not to proceed. It was a time of pause for us as we accepted what this meant for our daughter.
Nevertheless, we did accept and have continued to rest in God's will for Bea's heart to remain in an unfixable condition, meanwhile thanking the Lord that Beck's heart is now (nearly) fully repaired...a tough dichotomy to process for any parent's heart.
Then, without warning this past week, another curve ball swooped in hard and fast as we received news that the team of cardiologists who operated on Beck up at Stanford in April of 2016 believe that they can successfully operate on Bea.
Wait.
What???
Process.
Pray.
Specifically, Dr. Frank Hanley, deemed "the best heart surgeon on the planet" yesterday by Bea's cardiologist, made himself clear via second opinion that he believes Bea's complex heart is favorably repairable. She's been offered another chance.
Specifically, Dr. Frank Hanley, deemed "the best heart surgeon on the planet" yesterday by Bea's cardiologist, made himself clear via second opinion that he believes Bea's complex heart is favorably repairable. She's been offered another chance.
As Brodie and I met with Bea's cardiologist to discuss the intricacies of this decision, we prayed in advance for clarity, unity, and an obvious answer. We know there is no such thing as "risk" with God who is in control over all things. We know that we can trust Him. But, we also want to walk in wisdom and listen for the Shepherd's voice. We want to know what HE would have us do for our daughter.
So, as we listened carefully to all of the reasons to proceed, and as we weighed the reasons not to, several indicators made our final decision clear. One, if Bea does not receive this (albeit complex) Fontan, she may/will probably become more and more blue (cyanotic) with time due to her low oxygen saturation levels. This in turn effects her learning capacity, which tugs powerful on the heart strings of any compassionate parent wanting the best for their child. Of course, we want to give Bea the brightest prospect possible to be able to learn and process and have as fully functioning a brain as she can have. Secondly, this lack of oxygen that Bea lives with and has lived with her whole life thus far will inevitably take it's toll on the rest of her vital organs. If we can help avoid this, why wouldn't we? Third, if Bea does not receive the procedure, her heart will likely begin to form abnormal veins to compensate and this malformation is critical because it complicates the likelihood of a successful heart transplant in the future for Bea, a potential inevitability for our little girl who lives with but half a heart. Lastly, though the surgeons at our local hospital did not feel it was wise to proceed here, when Brodie looked into our doctor's eyes yesterday and asked him point blank what he would do if it was his daughter...he chuckled and said with hesitation, "I knew you were going to ask me that." (Insert 3 second pause that felt like 3 hours.) "If she was my daughter," he said, "I would proceed with the operation with Dr. Hanley." And with that, what we both had already been sensing throughout the meeting was confirmed. It was a unanimous conclusion for Brodie and me as we prayed on the way home, then sent the decisive text.
We stopped off to get Bea one last goodie, hot chocolate for our girl. She gleamed from ear to ear the entire day, innocent and unaware. We're protecting her the best way we know how. We're entrusting her to her Maker. Our love for Bea swells.
And so, here we go again...preparing for open heart surgery most likely in the summer, thankful for this curve ball that of course the Lord saw coming, even planned from long ago. When our precious daughter lay newborn, abandoned in a hospital in Beijing, China no doubt by a broken heart of another kind - hopeful we can only assume for the welfare and future of the child...she was NOT alone.
"For my father and my mother have forsaken me, but the LORD will take me in."
Psalm 27:10
Jesus was with Bea and He had (has) a great, redemptive plan for this special little girl.
"But the Lord stood by me and strengthened me."
2 Timothy 4:17
He's been with her all along. He's chosen to give her life. He has a new plan in store for Bea. And we're participating with as much "yes" as we can offer, swinging hard, playing by His rules, following the Leader, unafraid because He's a wise, loving, and sovereign good Father. Lord, be with us in the storm and may your will be done as we go from here...
He who dwells in the shelter of the Most Highwill abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”
So, as we listened carefully to all of the reasons to proceed, and as we weighed the reasons not to, several indicators made our final decision clear. One, if Bea does not receive this (albeit complex) Fontan, she may/will probably become more and more blue (cyanotic) with time due to her low oxygen saturation levels. This in turn effects her learning capacity, which tugs powerful on the heart strings of any compassionate parent wanting the best for their child. Of course, we want to give Bea the brightest prospect possible to be able to learn and process and have as fully functioning a brain as she can have. Secondly, this lack of oxygen that Bea lives with and has lived with her whole life thus far will inevitably take it's toll on the rest of her vital organs. If we can help avoid this, why wouldn't we? Third, if Bea does not receive the procedure, her heart will likely begin to form abnormal veins to compensate and this malformation is critical because it complicates the likelihood of a successful heart transplant in the future for Bea, a potential inevitability for our little girl who lives with but half a heart. Lastly, though the surgeons at our local hospital did not feel it was wise to proceed here, when Brodie looked into our doctor's eyes yesterday and asked him point blank what he would do if it was his daughter...he chuckled and said with hesitation, "I knew you were going to ask me that." (Insert 3 second pause that felt like 3 hours.) "If she was my daughter," he said, "I would proceed with the operation with Dr. Hanley." And with that, what we both had already been sensing throughout the meeting was confirmed. It was a unanimous conclusion for Brodie and me as we prayed on the way home, then sent the decisive text.
We stopped off to get Bea one last goodie, hot chocolate for our girl. She gleamed from ear to ear the entire day, innocent and unaware. We're protecting her the best way we know how. We're entrusting her to her Maker. Our love for Bea swells.
And so, here we go again...preparing for open heart surgery most likely in the summer, thankful for this curve ball that of course the Lord saw coming, even planned from long ago. When our precious daughter lay newborn, abandoned in a hospital in Beijing, China no doubt by a broken heart of another kind - hopeful we can only assume for the welfare and future of the child...she was NOT alone.
"For my father and my mother have forsaken me, but the LORD will take me in."
Psalm 27:10
Jesus was with Bea and He had (has) a great, redemptive plan for this special little girl.
"But the Lord stood by me and strengthened me."
2 Timothy 4:17
He's been with her all along. He's chosen to give her life. He has a new plan in store for Bea. And we're participating with as much "yes" as we can offer, swinging hard, playing by His rules, following the Leader, unafraid because He's a wise, loving, and sovereign good Father. Lord, be with us in the storm and may your will be done as we go from here...
He who dwells in the shelter of the Most Highwill abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”
For he will deliver you from the snare of the fowler
and from the deadly pestilence.
He will cover you with his pinions,
and under his wings you will find refuge;
his faithfulness is a shield and buckler.
You will not fear the terror of the night,
nor the arrow that flies by day,
nor the pestilence that stalks in darkness,
nor the destruction that wastes at noonday.
and from the deadly pestilence.
He will cover you with his pinions,
and under his wings you will find refuge;
his faithfulness is a shield and buckler.
You will not fear the terror of the night,
nor the arrow that flies by day,
nor the pestilence that stalks in darkness,
nor the destruction that wastes at noonday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only look with your eyes
and see the recompense of the wicked.
ten thousand at your right hand,
but it will not come near you.
You will only look with your eyes
and see the recompense of the wicked.
Because you have made the Lord your dwelling place—
the Most High, who is my refuge—
no evil shall be allowed to befall you,
no plague come near your tent.
the Most High, who is my refuge—
no evil shall be allowed to befall you,
no plague come near your tent.
For he will command his angels concerning you
to guard you in all your ways.
On their hands they will bear you up,
lest you strike your foot against a stone.
You will tread on the lion and the adder;
the young lion and the serpent you will trample underfoot.
to guard you in all your ways.
On their hands they will bear you up,
lest you strike your foot against a stone.
You will tread on the lion and the adder;
the young lion and the serpent you will trample underfoot.
“Because he holds fast to me in love, I will deliver him;
I will protect him, because he knows my name.
When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him
and show him my salvation.”
I will protect him, because he knows my name.
When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him
and show him my salvation.”
Psalm 91
