Tuesday, March 8, 2016

Surgery and Selfishness

We learned this afternoon that Avelyn's surgery was bumped up to tomorrow morning. Then we learned, just now, that it will be more than we were initially thinking. We've known about the possibility of her valve being damaged to the point of needing surgical repair since before the heart cath. Yet we have been hoping for the best but best case scenarios don't usually find their way to Avelyn. So once again she will endure another full on open heart surgery that requires the reopening of her chest and a bypass pump run. Her surgeon also feels it's best to surgically reoptimize her right pulmonary artery. This should relieve the right sided pressures that are now immenently threatening to damage her kidneys and liver pernamently.
I have known this would be a possibilty since we received the heart cath results. I have been fighting with myself whether or not we should allow more surgical interventions to be made to her pulmonary arteries when cardiac caths are an option, albeit much slower for the same results. One ballooning would likely not be able to get the results that surgical optimization could get. Meaning our girl would likely be living months and months without the optimized right sided blood flow, in addition to not good left sided flow. Her left sided PAs will not be touched tomorrow. These are too fragile to be messed with at all. They will need to grow and to be slowly ballooned up over time, likely every six months for a few years. 
I wish this were more black and white but there are risks to every option. If we wait and choose to only intervene on her right PA with cardiac cath, she may lose function of her kidneys and/or liver. What kind of life would she have with a fragile heart and multiple other dysfunctional vital organs? This is what we must take into consideration. 
Since we learned of Avelyn's diagnosis we have had the painful discussions of quality of life vs. quantity of life. For us, quality of life is much more important than the number of days, even though our selfish hearts often lose sight of that. As things currently are, Avelyn's prognosis is still good. She can still live a long relatively healthy life, if we make the right decisions at the right time and always ensure we take steps to optimize her growth and development. Granted she will still need multiple subsequent open heart surgeries to replace her pulmonary valve/conduit as she grows, and she will need cardiac cath interventions to optimize her PAs. But she can recover. She has the potential to do and be whatever she chooses. That's what keeps us going. 
Leaving her in her current state jeopardizes her functional independence. I don't want her to be worrying whether she'll need a kidney transplant or dialysis when she should be worrying who will ask her to prom. I don't want her to not be able to grow because her liver can't handle metabolizing proteins. 
Our decisions carry serious weight and it's terrifying. Last time we sent her into the OR we nearly lost her. I am physically sick at the thought of sending her back. It would be so much easier not to. However she deserves us to be strong enough to make decisions in her best interests.
I hope and pray we're choosing what's best. 
Please keep our sweet baby in your thoughts and prayers. She deserves the best case scenario operation results tomorrow. She so truly does. She is loved dearly and unconditionally. 
Thank you for your support, we look forward writing about much happier times and decisions soon.


  1. She does. You do. You have captured our hearts and I will keep praying. I promise...

  2. Just remember that whatever decisions you make about her are made out of love and with the best possible medical advice available to you at the time. There is no wrong decision here. Never be hard on yourself for wanting the absolute best life for your child. That quality makes you two wonderful, loving parents.

  3. Father, Thank you for your many blessings on our lives. I again bring Avie, Somer, Sean, and her family to your throne room. Give the doctors the knowledge to perform the procedure on Avie, and give Somer and her family peace and the rest they need. We need your healing hands. In Jesus name I pray. Amen