Nesting, Test Results, and a Family Photoshoot

My rainy today consisted of cleaning up pee all over the kitchen floor and carpets (I have 10 weeks to potty train Abigail. Yikes.) and nesting in the form of moving the crib out of Abigail's room and into our room. I can't believe I'll be full-term in 10 weeks. 10 WEEKS!!

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So.. I received an email this weekend that a new test result had shown up in my UMMC chart online. I quickly checked to see and it was, in fact, my MRI test results! I opened up the results to see nothing but a whole bunch of medical jargon that meant absolutely nothing to me. There were literally like 2-3 words that I understood: such as cleft palate. I think I will mention to the hospital that they should have a TRANSLATE button at the bottom of all medical test results/diagnosis in order for this important information to be quickly and easily translated into terms we lay-people can understand. :) 

Let's see how your medical jargon translator works:

"There is a mild prominence of the supratentorial ventricular system with trans-atrial measurement on left side measuring 1.3 cm and on the right side measuring 1.2 cm. No transpendymal flow of CSF is noted. There appears to be dysgenesis of corpus callosum with evidence of colpocephaly. Posterior fossa is seen with evidence of warp around cerebellum. There is herniation of the cerebellar tonsils through the foramen magnum. There is no evidence of intracranial hemorrhage. No acute infarct is seen. No encephaloceles are noted. Nuchal fold thickness is unremarkable. Globes are intact with normally located senses. No cleft palate/cleft lip is seen with normal appearing bilateral nostrils. There is a large spinal dysraphic defect involving lower lumbar and upper sacral spine with defect measuring 21.3 mm in craniocaudad dimension and 11.7-mm in maxium transverse dimension. Well-circumscribed T2 hyperintense collection is seen overlying the spinal dysraphic defect with linear soft tissue density likely representing a nerve root noted along the superior aspect of the defect. Conus medullaris appears to be normal. IMPRESSION: Mild ventriculomegaly with dysgensis of corpus callosum and small posterior fossa with herniation of the cerebellar tonsils. Spinal dysraphic defect involving lower lumbar and upper sacral spine with evidence of meningomyeloele which measures 2.1 cm in carniocaudad dimension. Findings are consistent with diagnosis of Arnold-Chiari II malformation."

I've learned pretty quickly in having a child with a medical defect that GOOGLE IS YOUR WORST ENEMY but online community groups, specifically for mothers of children with a certain disability or medical issue, are INVALUABLE. So I copied and pasted the jargon on a few social media sites and within minutes I received feedback like: 

"In my opinion, it says all normal for a baby with SB!! Big takeaways: lower lumbar/sacral lesion (this is good!). slight signs of hydro (normal for SB). Arnold-Chiari II malformation (normal for SB)"

"A very typical case of Spina bifida with nothing at all alarming or out of the ordinary."

"Sound pretty normal and actually pretty good for SB."

My Maternal/Fetal Medicine doctor had mentioned during the ultrasounds that he could not find the corpus callosum (part of the brain that sends signals from left to right). They agreed in the MRI that Ezekiel is missing all or some parts of this part of his brain. I have heard from other parents of children with SB that this could be completely asymptomatic or could cause problems with vision, hearing, motor skills, swallowing, gaining weight, etc. That is what is so crazy about Spina bifida... no two children (even with the exact same diagnosis) have the same outward symptoms when born! Hence why they call SB the "Snowflake Defect." ... And hence why I have never felt SO KNOWLEDGEABLE yet SO UNPREPARED for something in my entire life!
But my feeling of unpreparedness is actually a blessing because it reminds me that everything is out of my control. It helps me surrender EVERYTHING about this child to God! Ezekiel is HIS CHILD anyway!

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We went to Texas this weekend and had a family photo shoot in our "God Doesn't Make Mistakes" shirts. I feel so blessed to have such a supportive and encouraging family and group of friends in all of this! Don't know what I would do without any of you!

Shirts are still available to order through November 8th! www.booster.com/Goddoesntmakemistakes

MRI apparently stands for "Miserable, Restrictive, and Irritating"

As many of you know Ezekiel had his fetal MRI yesterday, which means this mama was stuck in the science fiction-like human scanner for 25 minutes. If you've never had an MRI, especially having an MRI while 25 weeks pregnant, you're probably thinking: "25 minutes. That's not a big deal. Come on, Amber. Stop exaggerating with the whole 'Miserable, Restrictive, and Irritating' title."

No, I am for real.

Miserable - The small cot that they slide you into the white tube on had about an inch worth of padding, which would've been fine but......
If you've never been pregnant, let me fill you in on a little something: LAYING ON YOUR BACK IS THE MOST UNCOMFORTABLE POSITION EVER (well, I suppose flat on your stomach could be worse... so maybe I should look at the bright side!)

Restrictive - They literally strap you to the cot! I could not move my arms at all, and was kind of scared to move anything really. Before you have the MRI, you have to sign this super long sheet of paper that asks whether or not you've ever had any type of metal in your body (from eye penile--whatever THAT is-- to tattooed eye make-up). I was literally praying while in the machine that I did not have some foreign metal in my body that I was unaware of. I could just picture something ripping out of my body mid-MRI and magnetizing to the inside of the tube. Over-dramatic much?

Irritating - I was very thankful they gave me earphones because that machine sounds like it's about to take off or blow up. Not only that, but there is nothing to look at while inside. I saw where someone or something scraped the paint off on the inside and kept staring at it for 25 minutes thinking... "Surely, it's been at least 5 minutes right?" I think I will invent some sort of plastic television screen that wouldn't interfere with the scan to place on the inside or some kind of TV goggles to let people watch a movie while they are laying their restricted and bored for half an hour.

Okay, so that was really over-dramatic. I have my moments. It really wasn't that bad. I had a few moments where my anxiety was about to get the best of me, but I just started quoting Scripture and breathing deep. God was good to me. We will find out the results of the MRI in the next week or so. I will meet with the neurosurgeon, Dr. Shiflett, on November 9th.

I met with the doctor at the Maternal/Fetal Medicine department at UMMC before going over to have my MRI. They did another sonogram to check him out and said he is developing perfectly. He weighs approximately 1lb 15oz so far and right on track. They mentioned that he was breech but I'm pretty sure after that MRI he had flipped because he was moving like a mad man in that machine! (Hopefully the technicians were able to get the images they need with a squirm-er like him!)

I guess an upside to having a baby with a medical defect is you get lots and lots of pictures! :)

Why does Spina Bifida Awareness matter?