Naomi debuts tomorrow
The C-section is set for 2 PM tomorrow, PST, the Feast of the Triumph of the Cross.
Our journey with Naomi has surely been roller coaster-like, complete with unforeseen sharp turns and terrifying dips. Yesterday we got some more news, described as "unwelcome." I don't understand much of it, but last Friday's MRI showed some necrosis in her basal ganglia. This finding is almost always associated with oxygen deprivation (which almost never happens in utero) or with some unknown infection. No one knows exacty what it implies. But it's not good news.
This latest joins her collective list of medical challenges: a ventricular septal defect (VSD or hole in the heart); a choarctation in the aorta leading out of the heart; enlarged lateral ventricle of the brain (too much cerebral fluid); and a severely undersized chin, which may necessitate intubatation to allow her to breathe -- either by nose/mouth tube or by tracheotomy in the throat.
One scary question mark after another, after another.
Her genetic condition is so rare that the medical team is working completely in the dark as to what we can expect. Even the MD geneticist who specializes in rare genetic conditions has never seen it before.
My wife's doctor is a good one, and a practicing Catholic. He said a wise thing yesterday, the essence of which is: in God's perspective, a human life is either 70 years or 70 minutes long, and all are equally important to Him. All of us are in His hands.
I'll tell you one thing. When I look at her ultrasound images, I see a gorgeous baby -- a virtual twin of her beautiful older sister Mariclare. So far, this little cherub has beaten very long odds. We're thinking about changing her name to Naomi Seabisquit Coffin.
Tomorrow and the days following will likely determine the extent of her medical "issues." Your prayers at this time are so appreciated.
John Paul the Great, Our Lady of Lourdes, and Servant of God Fulton Sheen, ora pro nobis.
10 Comments:
We will be remembering you all in our prayers - especially tomorrow.
8:47 PM
LtL Mom -- thank you so much. I might contact you down the road for homeschooling info.
God bless,
- P
8:59 PM
I am praying for you!
5:40 AM
Praying for all of you today.
10:30 AM
I'd be very happy to help.
Still praying.
5:11 PM
We love you Paddie. We all (Chris, Nat, kids, Sylvia) prayed very hard for you all today. And we anxiously await news. We trust in our beautiful Lord. Love the Stefanicks
7:33 PM
Good grief, Patrick, the stars are not behaving for us. I wish you all the very best in getting through this.
4:56 AM
Your family is in our prayers.
Joe
8:57 AM
Patrick,
This Naomi, with cerebral palsy, wasn't supposed to leave the hospital 44 years ago. When I didn't die, my parents were told to institutionalize me. When I was 10, a teacher told me that if I were a good kid and obeyed my teachers, I might work at Goodwill someday.
Now I have a master's degree and a full-time faculty job, live with my husband and my cat, and have a blessed life.
This is not to tell you the outcomes with YOUR Naomi will be as bright. Just telling you that experts are just guessing, too. And sometimes they are WAY off.
I'll be praying for all, but especially the little one with the beautful name.
2:16 PM
I came to your blog from Love2LearnMom's. Just to let you know I am adding my prayers to the others.
8:47 AM
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