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Agenesis of the Corpus Callosum and Colpocephaly

Posted on June 24, 2014 by Jen Posted in Agenesis of the corpus callosum, Pregnancy, Ventriculomegaly .

Here is what I know:

  1. I serve an all-knowing God
  2. He is good…all the time.
  3. My son is missing his corpus callosum entirely. The technical name is complete agenesis of the corpus callosum. The CC connects the left and right hemispheres of the brain and facilitates communication between the two. It is a congenital birth defect and will not ever form. The colpocephaly is just a fancy new name for the ventriculomegaly. Where  VM is a general term for enlarged ventricles, colpocephaly  is a specific type of dilation – in this case the occipital horns of the lateral ventricles are enlarged to “fill in the space” left by the missing corpus callosum.

Thats it. How this will affect him, we have to wait and see. Each person’s brain is unique, and his will be no different in its uniqueness. He “could” have developmental delays, intelligence deficits, seizures, and a range of other complications. He “could” function typically for many years until symptoms develop. We just won’t know. But, we love him regardless, he has a super cute profile I can’t wait to kiss on, and just like our other kids, I’m excited to get him here safely and start getting to know him for who he is

Thanks for your prayers and all the well wishes and texts. He was super cooperative for the MRI, and I was only uncomfortable for about 20 minutes. The staff at CHOA Egleston were so comforting and amazing to this “non child patient”, it made me wish I could go there for all my health needs 🙂 John asked me if it was normal to be hugged after this type of event. I think it definitely should be.

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Tags: agenesis of corpus callosum, Colpocephaly, Fetal MRI, ventriculomegaly .

One more “get up” until our Fetal MRI

Posted on June 23, 2014 by Jen Posted in Pregnancy, Ventriculomegaly .

This morning’s Google search has been concentrated on preparing for our Fetal MRI tomorrow. If you don’t know WHY I’m having a Fetal MRI, please read this. I’ve had a week to think about this – which is a dangerous thing. I will share with you some of my irrational fears. Please do feel free to laugh at me.

  1. The MRI tube at Egleston will be child sized. I am comforted by the fact that a 16 year old linebacker is also a “child” so they probably use a standard size MRI tube just with kid comforts. I was told I could bring the DVD of my choice. Decisions, decisions.
  2. They might not have a gown large enough for a pregnant woman who is gaining gravitational force with each passing day. Again, I picture linebackers and I am slightly encouraged. I do know for a fact they have bed sheets there; that’ll do.
  3. Have I had some unknown procedure where an errant piece of metal was left inside my body? One way or another, I will find out – hopefully without pain.

Here is what I do know, and I will share in case you are curious, because some of you have asked me:

  • I will NOT be sedated. I’m just the host here… I plan to take a nap. Please pray that this baby chooses to do likewise.
  • I will NOT be administered the IV contrast stuff – it hasn’t been tested for pregnancy and it crosses the placenta – gross.
  • I will be in the tube for about 30-40 minutes, maybe more, while they try get the images they need. Most likely on my back, oy.
  • I will meet with the neuro-radiologist after my imaging series is completed to go over the findings and prognosis. His name is Dr. Desai, and from my background search, it appears that he teaches this stuff at Emory, so he’ll do.

So there you have it. Shout out to my sister, Sarah. She has graciously offered up her home and self to watch over the littles (minus one who is with the grandparents this week), so that John can come with me. The kids are excited about this change in their rather boring summer schedule. So the plan is a trip to Vinings after breakfast, then the journey into town. We’ll be checking in around 11:30 am and hopefully, we will get some answers.

P.S. Fun Fact: apparently tattoos can have microscopic bits of metal in them and can heat up in an MRI. I am tattoo-less, but found this interesting.

Thanks for all of the positive thoughts and prayers!

 

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Tags: Fetal MRI .

MRI Scheduled and 28 week update

Posted on June 18, 2014 by Jen Posted in Pregnancy .

Today, I am 28 weeks and 3 days into my pregnancy, so I thought I’d just post an update while I twiddle my thumbs waiting for my Fetal MRI next Tuesday, 6/24, with Dr. Desai at CHOA – Egleston (they have a partnership with the Emory University Radiology Department to do this sort of imaging – and I’m secretly praying it’s not a child sized MRI tube).

According to the “What to Expect” app, my baby is 16″ long and weighs 2.5 lbs. Or as big as “a head of cauliflower”?? What a weird comparison, but I digress.

Saw Dr. Zimmerman at my regular OB practice today (they will be the ones actually delivering him, even if my care is managed by Dr. Lopez-Zeno at Northside Perinatal) and here’s how things are looking!

Weight gain/loss: I’ve finally gained 3 lbs over my first visit weight. Still breaking even with zero gain on my morning scale. In my defense, I had just had lunch.

BP: 132/78

Other: measuring “perfect” and no weirdness in my, um, specimen. I declined the dTap vaccine – I just don’t want this kid getting exposed to one more thing, and we are at a really low risk of exposure anyway. Not to mention it is an off label use not indicated for pregnancy or after the required booster, blah blah blah. I declined it. Then we talked in her office and she sweetly asked me if I was sleeping ok. Complimented my weight “gain”, and asked about the MRI appointment and what had gone on with Dr. Lopez-Zeno since my last visit to the office. She had the “I’m so sorry face” which sort of freaked me out a bit, but still I really do like her a lot because of the personal attention and time she gives me at each appointment. And not sitting on the exam table either…in her office, where I feel human.

Things I am thankful for today:

  • Gestational diabetes. Seriously, without it, I would not have had anymore ultrasounds until who knows when. The Lord knows I like to be prepared.
  • Medicaid, and the fact that we are poor enough to qualify still – praises be! The end.
  • Living in Atlanta. I’ve read stories on other blogs about the distances people travel to come here to deliver or see the specialists here. I live and work down the road. Thank you, Jesus.
  • Northside Hospital. I never wanted to deliver there. Avoided it like the plague. But I have changed my tune because I know that Baby Boy and I will be in the very best care, and right next to CHOA – Scottish Rite. How “providential” that my private insurance had limited OB & hospital options, and it was the only “in network” hospital.
  • Uneventful OB visits.

Everything happens for a reason. I do not believe in coincidence. So I will be thankful, and choose to choose joy!

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Tags: 28 weeks, Fetal MRI, pregnancy .

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