We went to Boston for a level 2 ultrasound last week. What is a level 2 ultrasound? (We had to ask this question.) It is an ultrasound consult with a doctor who is particularly good at reading ultrasounds. We were told that this doctor was the doctor who actually discovered Cystic Hygromas (what our baby is diagnosed with). This little tidbit of info seems hard for me to believe. But I suppose it is a little reassuring that perhaps we can trust her expertise.
Without an amniocentesis, it's impossible to say for sure what this baby's diagnosis is, but based on this doctor's conclusions our baby has Turner's syndrome. It is a genetic abnormality in which the baby didn't receive a second gender chromosome at conception. So essentially she is an XO instead of XX or XY. My understanding is that they are born looking like girls but without the reproductive organs. Babies who are typically 100% XO without other factors have a 0% survival rate which looks to be the case with our little girl.
The doctor could not give us any predictions for how long the baby would survive in the womb, but she did say that there was 0% chance that she would survive even 1 day once outside of the womb which has as much to do with the diagnosis as it does with the fact that there is no amniotic fluid. However, she did say that the baby is under a lot of pressure right now because she is essentially "waterlogged," i.e. she has fluid everywhere in her body (around her heart, lungs, limbs, head, etc...)
So we continue the waiting process as we anticipate the unfolding of God's plans for this baby's life as well as our own lives. I felt a surprising amount of relief after the ultrasound as I feel like the hundreds of possible directions this journey could take has now been narrowed to just a few. And strangely life seems to be taking on the familiar rhythm of what it looked and felt like before this dramatic journey began. I'm ready to start some old routines and get things back in order as we wait for God to bring this child's life to an end. I do pray that it will end soon as the outcome becomes significantly more physically complicated as time goes on for both the baby and me.
One thing the Lord has definitely taught and supplied for me throughout these past 4 weeks is the necessity of living each day individually and not allowing yourself agony or fear over the unrealities of tomorrow. That alone is what has sustained me. He truly means,
"Be strong and courageous. Do not be afraid or terrified..., for the Lord your God goes with you; he will never leave you nor forsake you." I believe this with every ounce of my being. I didn't know before that I truly believed it. But He has proven my faith to me. And for that I will be forever grateful.
Her name is Lydia Grace. I love that name.
3 comments:
I love her name! Lydia Grace is just beautiful and if we could see her sweet spirit it would be even more gorgeous.
OMG Erin, I just finally started reading your blog, I had no idea! Once again you amaze me with your strength and resilience! Thank you for sharing this journey with us and your unshakable faith that has more than once inspired me. May God reveal his tender love and care to you at new levels, never before imagined, through this tragic situation. Much, much love.
Alexine
Sweet friend- I have thought so many times about calling you, not knowing what to say. I am so thankful for this blog and for your openness and vulnerability. I love you, dear friend, and I am praying for you right this moment. Hugs from Missississippi.... and by the way, Lydia Grace is the name of one of my very best friends from college... it is a fantastic name. :)
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