I wrote about the curve ball we didn't expect last week following Bea's investigative surgery...the prospect of not having her next open heart surgery (Fontan)...the finishing surgery we have anticipated for nearly 2 years now. We didn't see that coming! But, after our visit with her cardiologist on Monday, the blurring has faded to something resembling clarity and God's peace has settled upon our hearts.
It was a treat for Bea to have both Mommy and Daddy at the doctor with her for her appointment. She told us repeatedly how much it meant to her and in typical-me-style, I barely made it through the vitals without crying. Bea is just such a precious little girl and in all honesty my heart breaks for her when I look at her and think of how very much I want to make all of her owies go away. There is something about Bea that conjures up immense compassion in my heart and everything in me wants to protect her...especially in these circumstances. She's such a vibrant child. It's easy to not dwell upon her frailty on a daily basis because she's always so...alive! I thank God that He is Bea's advocate and that He loves her way more than I ever could! He has a plan for Bea and we believe that it is good...even if it includes hard (which indeed it already has). But we know that in every trial she's endured, He will use it for her good and His glory. We're discovering His plans for her future one step at a time right now.
"For I know the plans I have for you, declares the LORD,
plans for welfare and not for evil, to give you a future and a hope."
Jeremiah 29:11
plans for welfare and not for evil, to give you a future and a hope."
Jeremiah 29:11
(such a good little patient)
Bea has Dextrocardia (among other diagnoses), meaning that her heart is on the right side of her body and also it is all in a mirror image to a typical, normal heart. She also only has a single ventricle, the weaker of the two as fate would have it, meaning in layman's terms she is living with half of a heart...which can only do the job of a whole heart for so long. We pray for miracles and healing and for the Lord to allow Bea's little half-heart to pump strong as long as He'll allow. And then, at some point, she will most likely need a transplant. We're told this could be anywhere from 15-20 years from now based on her current condition.
The exploratory surgery last Monday revealed a few surprises for us. Most notably, her first open heart surgery accomplished quite a bit more than we could have anticipated! We praise God for this great news! The surgeon had installed a PA band to help with her pressures and as a result, amazingly, she is so close to the peak functioning possibility for her circumstances that they have determined the Fontan surgery she would have been due for would be too high risk for not enough gain. Her complex anatomy and an extra, unusual vein in particular create abnormal complications including liver failure among other possible concerns. Her doctor kept saying how "lucky" she is and also how "lucky" she was to have survived in China until her first surgery here with us in the US. (Of course, we know Who is in control of the details!) Bea's progress is good news! The bad news is, her heart is under stress as a result of her still-low oxygen levels and single ventricle, which in turn causes stress for her other vital organs and over time this will take a toll.
After talking to the cardiologist about all of this extensively, we agree at this point that the benefit of the Fontan surgery does not seem to outweigh the risks for Bea, especially in light of her complicated anatomy and the extra challenges that creates. At this point, we are settled not to proceed. We will be watching her over the course of the years for any changes, but her cardiologist feels that she's looking great considering her obstacles and we agree. We respect the opinion of the team of 17 local cardiologists + 2 surgeons who have made this decision for Bea, and yet we have also agreed to contact the surgical team who performed Beck's surgery up at Stanford for a thorough second opinion. We await their response within the coming months so we will see what happens there...
In the meantime, we rest in knowing that there are no surprises for God! We have sure peace that He has planned Bea's life with purpose and that He will accomplish His intentions for her. We believe that life does not have to be long to be valuable eternally and yet we hope for long life for our daughter. We will do everything we can to ensure Bea has the highest quality of life she can possibly have for as long as the Lord grants her time with us and we thank Him for graciously allowing us to gain even further eternal perspective through these circumstances we're faced with. We know that as technology increases, the odds of new procedures and medications to help Bea get better all the time. Who knows what they will be able to accomplish in 15-20 years!? For now, we keep loving Jesus and loving Bea and putting one foot in front of the next, knowing that in ALL things, God is good! We thank Him deeply for bringing Bea to our family and we love her so very much! It's a privilege to fight for her and at the same time to rest in Him with her and to teach her that she too can trust her Father God. We look forward to the future He has in store for Bea and we just know that He will use her life in mighty ways to glorify Himself! He already has.
"Be still, and know that I am God."
Psalm 46:10
Psalm 46:10
