To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Saturday, July 27, 2013

An Update

Friends, this week has been hard. Monday morning we had another fetal echocardiogram done at Texas Children's Hospital. Good news was that there was no sign of fluid anywhere on Lenah's heart. Bad news is that they detected that her pulmonary valve is leaky. This is significant because the pulmonary valve is used to replace the too small aorta and valve in the first open heart surgery- the Norwood procedure. Our cardiologist was hesitant to make any definite conclusions without talking to the cardiac surgeons and before we have another fetal echo in two weeks. If the pulmonary valve continues to leak or gets more leaky,it seems that there is really not much that can be done for Lenah surgically or otherwise. My prayer to the Lord since the beginning of this journey is that He would lead us clearly each step of this journey. Of course, I told Him that my preference would be for her to be healed and that this would all go away. Second to that, I just really didn't want to have to watch my baby and my family suffer through months of surgery, hospitalization, and separation. I especially did not want to have to make a decision as to whether to even attempt surgery in the first place or not.
It seems like it would be easy. You just do whatever you can to save your child, right? But in the back of my mind has always been the thought, save her from what? I know, that I know, that I know, that if my baby ceased to be alive at this very moment, her very next moment would be in the presence of Jesus. How could that ever be a terrible thing? Is prolonging her earthly life, no matter the suffering, really the best thing for her? For us? I know we are not the first people to navigate these tumultuous waters and I wish that no one else would ever have to traverse a similar path after us. But here we are and it stinks. The flip side is do we avoid suffering even though that we know that out of suffering can come amazing from ashes and such. Do we deny the possibility that there is a greater purpose even in great suffering? I think I have cried more tears in the last 3 months than I have in all my previous years before.
Those that know me, know that I have a hard time “enjoying the process”. When something needs to be done I like to get it done and get it done now or avoid it all together. Not that this is something at all to be enjoyed, at this point I'd just like to be through this valley. I am tired of this process. The last trimester of pregnancy can be difficult under the best of circumstances. Right now it seems ….I don't even have words for how it is.
So, I guess for now our greatest needs have not changed. Please pray for us. Our next fetal echo is scheduled for August 6th. We just ask that the Lord would lead us clearly. Thank you for praying.

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