Zoe is still eating. And eating. And looking around. I offered that perhaps she wasn't really focusing on anything, but Jen slowly moved her Nuk around in front of her and, sure enough, those big eyes followed it.
I talked to my mom last night and I told her that Zoe is indeed a great-granddaughter of Alfred Adler, who just didn't go easily into the night. My Opa had been through wars and prison camp and enough life and I don't think knew how to surrender to anything. The sun came up this morning, and she still has breath in her lungs. And she's hungry.
One thing Jen and I know for certain is that had we had the amniocentesis when it was offered last November, it would have told us that Zoe had trisomy 18. And had the medical professionals known that, when Zoe was born not breathing on March 22, they would have done little or nothing to revive her.
We know that because even during her days in the hospital, after the doctors found out that Zoe has trisomy 18, their attitude changed. Our point in microcosm: When Jen and Zoe were in the hospital, Zoe was fussing and the nurse offered to give her morphine. But Jen picked Z up and burped her, and she went to sleep. Morphine?
That is not to say we have bitterness or lessened respect for anyone at the hospital. They figured their part was done. Zoe was going to die, so it was now time for us to decide: do you want to feed her all she needs to eat? Do you want to turn the photo lights on her to reduce her jaundice? She's going to die, anyway.
Recalling those conversations impresses on us a certainty that had they known, the doctors they wouldn't have revived her at birth, and certainly not two hours later when she stopped breathing again. And you and we would have been deprived 26 days of a pretty special person. Someone who God has used mightily.
I don't know what the next hours or days or minutes - or years - will bring with Zoe. I don't want to get to the point of assuming what a 26-day old thinks and pretending she is capable of Augustinian theology. But there is a profundity in her being with us today. Life is hard, but it's worth the breathing.
This latest updated picture of Zoe is
ReplyDeletesuch a beautiful example of how fragile this life that God gives us truly is. I have prayed for many babies this past year, Trisomy 18 especially. Why? I don't know except it is a burden in my heart and the fact that this condition is not supposed to be compatible with life. I always have hope and each new day brings hope. I read the following words on a dear nurses blog and it put words to the hope I have always felt in my heart:
"The kind of hope DI often think about (especially in situations that are particularly hopeless) I understand above all as a state of mind, not a state of the world. Either we have hope within us or we don't; it is a dimension of the soul. It is an orientation of the spirit, an orientation of the heart, it transcends the world that is immediately experienced, and is anchored somewhere beyond its horizon. Hope [is] an ability to work for something becausse it is good, not just because it stands a chance to succeed. The more unpropitious the situation in which we demonstrate hope, the deeper that hope is. Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." ~Vaclav Havel.
I am sorry for the length of this but I feel so strong in the hope that God is teaching through Zoe. I can only imagine how hard this time is for the two of you with all of the uncertainty day by day. But she is the most beautiful example of hope against hope I have ever witnessed. I pray your blessings are so many that your heart overflows as you care for this fragile gift God has put in your special care. He trusts you to be her parents. May each breath you take together as a family be blessed with joy and hope. I continue to pray for you daily. Zoe's life story has just begun and her purpose is so Huge. 26 days of a miracle so far.
Laurie in Ca.
Thank you, Laurie, for your words - such depth and strength can only come from God. And He brought you into the life of love, hope and prayer that surrounds Zoe, Greg, Jen, and all the Batiansilas in Zoe's family. Welcome, my sister in Christ, and thank you so much for your words, thoughts and prayers!
ReplyDeleteJen and Greg - I sat with this picture staring at me all day - such fragile, yet determined strength in her little face. She truly is beautiful. And amazing. She kind of takes my breath away.
Hi!
ReplyDeleteLast night was the first time that I had read your blog. Zoe is a beautiful little girl.
Your post "Fraternity of Hope" really hit home. My son was born to heaven about 1 year ago. He had T18. I was just amazed at the odds of having a T18 baby born alive. I've often wondered just what the odds are for a T18 boy being born alive vs a T18 girl being born alive.
I totally agree with your new post about being glad you didn't know ahead of time because the doctors would have given up on Zoe. Oh how I wish that I wouldn't have known ahead of time. The doctors gave up on my son from the first ultrasound at 20 weeks.
I really think that my son would have been born alive if I didn't know ahead of time. Instead, the medical field just wanted me to terminate...something I just couldn't do.
I was finally induced at 36 weeks due to an excessive amount of amnio fluid. My son was head down before they broke my water, but he turned breech after they broke it. They wouldn't monitor him...they wouldn't do a c section. He turned back around before birth.
I will keep all of you in my thoughts in prayers. I know that you are enjoyed every second that you have with precious Zoe.
Jeanne