Cora Love Jackson came into our lives on May 22, 2012 at 10:37 am. Her first announcement was a little squeaking noise, to which Jake and I have found out is her cry. She has dark hair and similar features to her big brother Will….. and maybe her Momma’s coloring, not sure. She is, in the words of Bubba, the prettiest thing he’s ever seen.
I usually write the title of my posts after I’ve written it. But today’s post I have been thinking about for a few days now and there just aren’t any other words for it. The moment we found out we were having a girl, we also found out that something was wrong. This was back in February and it has been drama ever since. Six trips to Dallas, four trips to Longview, 5 doctors, an MRI, countless sonograms, an EKG, measurements, hotel stays and then ending with my first cesarian section.
Cora Love has Choledochal cysts attached to the surface of her liver. They’re also possibly inside and blocking the common bile duct that drains from the liver to the gall bladder to the small intestine. This is extremely rare. Actually it occurs in 1 in every 2 million births and predominantly Asian girls. So she’s actually our little 1-in-2-million, little Asian baby girl (maybe the dark hair?).
My new OB in Dallas had only seen choledochal cysts in his clinical books. The sonographer had never seen one on a scan. The pediatric surgeon has performed 25 surgeries on choledochal cysts and only two cases involving newborns. That’s what is even more rare; finding it prenatally. Choledochal cysts usually aren’t found until five years or older. If misdiagnosed or left untreated they can eventually cause infection in the blood stream then later cirrhosis of the liver, irreversible liver damage leading to a liver transplant. When we went for our 21 week ultrasound my Dr in Tyler saw an abnormal size stomach and referred me to the Dallas specialists. At the specialist appointment we quickly saw that it was the gall bladder and liver area and not the stomach. But if Dr. Harris hadn’t caught the abnormality, Cora would’ve been misdiagnosed with mild jaundice for a month or so then infection could’ve quickly occurred. I can’t thank Dr Harris enough. LOVE HER.
My new OB in Dallas was Dr Gaitonde, who was an absolute blessing. We met him about 3 weeks before Cora was born and he made us feel as if we’d been seeing him the entire 9 months. He gave us an impromptu tour of Baylor Medical, hooked us up with several important people over there, and even made late night calls and texts to check on us. If I didn’t love Dr Harris so much, I would consider driving to Dallas once a year for my annual checkup with him!
So that is all the information in a nutshell. Cora Love was born looking and ‘performing’ great. Instead of going directly to the NICU at Baylor University Med Center she was able to stay in the room with Jake and I the whole time. They checked her bilirubin count every night by pricking her heel. It was always less than 75% which was good. She has a little jaundice like a lot of newborns but nothing severe. That probably wouldn’t show up for a month or so. The liver is a nonactive organ in utero. The toxins wouldn’t begin to build up in the blocked bile duct until after she begins to eat after birth. But so far she looks beautiful and is a wonderful baby!
The sonogram they did on her right after birth showed the location of the cysts. From that information, the surgeon will probably create a new drainage duct by cutting a piece of her small intestine and connecting it to the liver and common bile. This is after removing the cysts themselves. That is my guess from what he has told us so far. He will tell us his plan pre-surgery and I will update the blog as soon as I can. I don’t know how long the surgery will take. If it is successful with no complications, then she should lead a perfectly normal life; with a little different plumbing than the rest of us and a few blood tests to check for blockage or infection.
We have her one week newborn checkup with her Tyler pediatrician in the morning at 9:30. Then Jake, she and I will leave for Dallas. We need to get to Children’s Med Center by 3 pm for her physical and pre-op blood workup. Wednesday morning she can have her last feeding at 4:30 am. She can have water until 6:30 then nothing afterwards. We’re supposed to arrive at the hospital at 7 am and there is one other case ahead of her that starts at 7:30. How we’re supposed to entertain a hungry newborn for a few hours I have no idea. Please send prayers our way during that time, that we can somehow get her to sleep through that or maybe Jake can pacify her until they take her back. Send prayers during her surgery and after, and for the week post-op for her healing. Every minute of every day I love her even more, which makes the anxiety of this surgery grow worse and worse. I know God always has a plan, and I pray it is His will for this surgery to be successful and for Cora Love to come out completely fine.
I will soon update everyone on how her big brothers have reacted to this beautiful creature in our home, her squeaky cry (or ‘geeking’ as Rhett says), and how wonderfully she has joined this loud, rambunctious group of boys.
Until then I’ll end with saying that Cora Love’s Daddo is the best husband a girl could ever hope for… Mr. Mom, yard worker, grocery shopper, diaper changer, baseball coach, pool fun guy and today, fishing buddy and hamburger grill master.
Thank you Lord for him, my boys and my beautiful little ‘1 in-2 million.’
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We love her too!! She is SO BEAUTIFUL!!! Our prayers continue for a successful surgery!!
Prayers for your sweet baby girl! love u guys!!