Tuesday, March 10, 2015

Update on our girl

On Friday, we went back to Dr. B, the high risk specialist.  He measured all of Aubrey's bones.  Her legs, arms and chest had not grown since the last visit.  This means that she is basically done growing in her long bones.  Her chest is now at the 10th percentile.  If you remember from my first post, less than the 10th percentile was what he said would basically guarantee this would be lethal.  Also, he stated that her humerus and femur were more bowed than the last time.  All other systems, including her heart and her head, look great.  He was even more certain this time that she has TD (Thanatophoric Dysplasia) and not another type. 

So what all of this means is that we are now very certain she will not have enough lung tissue to be compatible with life. Josh and I have always been on the same page with what to do if that were the case.  We have decided to give Aubrey only comfort care when she arrives.  "Comfort Care" is the medical word for no intervention and just keep her happy and comfortable.  We will just love on her and meet her and wish her Happy Birthday.  In some weird way it actually feels good to have a plan.  It most certainly is NOT the plan or the path we wanted.  But, being able to know what we are dealing with for certain and to know how we are going to move forward gives this control freak some sense of calm in this crazy situation we find ourselves. 

My biggest fear at this point will be getting her here alive.  I just want Josh and Kye and others in my family to be able to meet her too.  I get her all to myself right now, which is such a precious time.  People who are moms know that you already have such a special bond with the little one before they even get here.  She is such a ham already too.  Every time we see her on ultrasound she is opening and closing her mouth, like she is talking.  Also, she flips and flops all the time.  Specific things she likes are music, her brothers voice and her granddaddy's preaching.  She also ALWAYS move if I start to cry over her...like she is saying "Mommy, I am just fine.  Don't be sad." 

The reality of her never coming home to her earthly home is starting to set in though, and it hurts almost more than I can bare.  The other day out of the blue, Kye said "Where's Aubrey?  Aubrey come home to Kye's house!"  All I could do is cry.  But we are all trying to enjoy her as much as possible.  I try to bring everyone to my office to see her on ultrasound.  My parents came the other day and she was being so sweet.  Kye talks to her all the time and loves to love on his baby sister.  Josh talks to her and made her a music playlist that we listen too most nights. 

This song by Shane and Shane that my friend Josh sang at church the other day really hit home.  It is based on a verse from Job 13:15 "Though he slay me, I will hope in him."


Another verse that I have been meditating on is one that my friend Laine sent me in a sweet card
2 Corinthians 12:9 "'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so Christ's power may rest on me."

Thank you for all your kind thoughts, cards and words.  Mostly thank you for the prayers.  Please keep them coming.  We need them. 

God Bless. XOXO

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