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Sinking In

Posted on by Posted in Agenesis of the corpus callosum, Pregnancy .

I think last Tuesday I was pretty much running on adrenaline. I didn’t cry. I was so mentally prepared for what I “knew” they would say, that I barely flinched. I’m a bit self conscious about receiving any accolades for “being so strong.” So here’s the part where I tell you that the next day, I came home to my husband waiting for me in the driveway, his eyes red. He had Googled, poor guy. We just held each other, and cried. The “sinking in” feeling is where it gets real. This is not a “maybe,” it’s our new unknown reality.

It’s not sadness though. Just an insane worry for a little dude we already love so much. I think about how John named him (and was rather adamant about it too). It couldn’t be more perfect.

Barrett: bear-like, strength or power of a bear

Maxim: greatest

Just a 30 week update for you today:

At the Perinatologist Friday, Barrett was weighing in at 3lbs 4oz at 29w5d, putting him in the 55th percentile – which is perfect for him. He’s maintained this same rate of growth for the past 2 months now.  Other remarks were that everything else looks good “considering.” So fluid levels, heart activity, movement, breathing…all good. We left with instructions to make consultation appointments for the Northside Hospital Neonatologist, Dr. Kupke, who is also a geneticist, as well as a mission to get a referral to Children’s at Scottish Rite to consult with the Pediatric Neurologists. No rush on these, we have a while, and these appointments are more of the “what to expect” variety so it won’t be so overwhelming at birth and thereafter.

At my regular OB visit today, I have gained 1 pound total from pre-pregnancy, my BP was 120/80, and as per his usual style, Barrett had a great time kicking the doppler wand, but his heart rate was variable in the 140’s. I made my next 7 appointments for presumably the rest of this pregnancy for our NST’s at that office, and so the pattern after my visit with the Perinatologist on 7/11 will be Tuesday NST’s (non stress tests*) at the regular OB, and Friday NST’s at the Perinatologist. Fun.

(*Non stress tests: I sit in a recliner for at least 20 minutes with 2 straps around my belly. 1 is a heartrate monitor, the other is a contraction monitor. I am given a little button to press every time Barrett moves. The clicks of my button, his heart rate, and any contractions I have are recorded on a “strip” – a printout – and the hopeful result is a heart rate that increases with activity, and returns to a baseline resting pattern soon after activity. Dips to low, racing too high = bad. A flat heart rate with little variation is “non reactive.” The goal is to get a “reactive” test result which generally means that he is happy with his womb environs, and handling his stress well.)

So, all in all, we are sinking into this new normal. Some days I find I don’t even think about the diagnosis anymore. I’m trying to just live in the moment and enjoy these last remaining weeks – hemorrhoid and all. I’ve been simultaneously encouraged and terrified by the parents of kids with this diagnosis who have shared their stories with me on Facebook. I hope that some day I can be a help to someone as well.

MRI Scheduled and 28 week update

Posted on by 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!

2 weeks is a long time

Posted on by Posted in Pregnancy, Ventriculomegaly .

After our initial Ventriculomegaly diagnosis which you can read more about here, we had to wait two weeks before we could have a repeat ultrasound. We also were finally able to get approved for the Harmony Test at that same visit, which meant we were waiting for results of the blood work while ticking off the days.

I think I found the end of Google. I read all the medical papers and abstracts I could get my hands on. I searched Down Syndrome and Ventriculomegaly, I searched for Ventriculomegaly and prognosis, I viewed Google images looking for ultrasound images that resembled mine. I was attempting to control the uncontrollable. I realized I was pretty confident I could handle ANY diagnosis as the cause of the ventriculomegaly – I just wanted to know. I also looked at pictures of babies with hydrocephalus, researched shunts, and attempted to prepare myself for any scenario.

I don’t know if this is the ‘right’ way, per se, to handle information like this, but it was my way.

10 agonizing days later – “your Harmony Test results showed a ‘low risk’ for Trisomy 13, 18, & 21”

Ok. Thanks. See you Friday.

Friday came with a certain measure of peace. I can only say this was likely due to all of our friends and family praying for my sanity. Once again, I went alone – my poor husband watching our other kiddos and playing on his online casino game in which you just deposit to play so it takes his time after the kids bedtime.  I knew immediately that the problem had not “gone away” as I had been praying for. The two large black blobs were staring defiantly back at me. More measurements. More show and tell. The tech was super sweet, and I think because she pitied me, she flipped on the 3D transducer. I’ve never had a 3D ultrasound before. Amazing. I think seeing him gave me some relief. He looked…perfect. And beautiful. And just like his dad. Melt. (For some reason I can’t upload images at the moment, but when I can – I will)

Excruciating wait. Doctor comes in. “My tech is getting measurements of 13 – 13.5mm, so I would consider this stable.”

Stable. Ok. Could be worse.

So in short, we went from 12-12.5mm to 13-13.5mm in two weeks time.

“Also, I am unable to visualize the Corpus Callosum (say what?), and then see how the ventricles are shaped with the widest part farther away from the Choroid Plexus? (um… I guess so?) This is typical in Agenesis of the Corpus Callosum, so I think the next step is to get you scheduled for a Fetal MRI with the CNS Specialist. From there we will consult with the Pediatric Neurosurgeons, and the Neonatal team to discuss what might happen at delivery.”

SO MANY ACRONYMS!! I think most everyone knows what an MRI is, and a CNS specialist is a radiographer who specializes in the Central Nervous System. To accomplish this task, I will have to go down to Children’s Health Care of Atlanta Egleston Campus where Emory has a joint partnership for this type of MRI.  And what the heck is a Corpus Callosum?? I’m not even thinking about the consults with the Neuro and Neonatal teams yet because their involvement and at what level will be determined by the MRI results.

From Wikipedia:

Agenesis of the corpus callosum (ACC) is a rare congenital disorder in which the corpus callosum is partially or completely absent. ACC is usually diagnosed within the first two years of life and may manifest as a severe syndrome in infancy or childhood, as a milder condition in young adults, or as an asymptomatic incidental finding. Initial symptoms of ACC usually include seizures, which may be followed by feeding problems and delays in holding the head erect, sitting, standing, and walking. Other possible symptoms may include impairments in mental and physical development, hand-eye coordination, and visual and auditory memory. Hydrocephaly may also occur. In mild cases, symptoms such as seizures, repetitive speech, or headaches may not appear for years.

ACC is usually non-fatal. Treatment usually involves management of symptoms, such as hydrocephaly and seizures, if they occur. Although many children with the disorder will lead normal lives and have average intelligence, careful neuropsychological testing reveals subtle differences in higher cortical function compared to individuals of the same age and education without ACC. Children with ACC accompanied by developmental delay and/or seizure disorders should be screened for metabolic disorders.[3]

In addition to agenesis of the corpus callosum, similar conditions are hypogenesis (partial formation), dysgenesis (malformed), and hypoplasia (underdevelopment, including too thin).

Recent studies have also linked possible correlations between corpus callosum malformation and autism spectrum disorders (ASD).[4]

Kim Peek, a savant and the inspiration behind the movie Rain Man, was found with agenesis of the corpus callosum.

And, there you go.

So that’s where we are right now. I’m just waiting on Egleston or my specialists at Northside Perinatal Group to let me know when I will be shoved into a loud tube. A shout out to Dr. Lopez-Zeno. Should you ever find yourself in need of a Perinatologist, I can’t recommend him enough. His calm, optimistic, no nonsense, thorough approach, is just what this mama has needed. I think he thinks I’m smarter than I actually “might” be, but I appreciate that he doesn’t talk down or simply to me. He gives me information and lets me run with it, available to answer any questions that I have.

 

Before Ventriculomegaly

Posted on by Posted in Pregnancy, Ventriculomegaly .

One of the things I’ve been looking for in my search for ventriculomegaly, is background or “signs” leading up to our diagnosis. I think the first thing I asked at hss.edu, was “Did I cause this?” So for background purposes, this is the story of this pregnancy so far.

I am 36 years old – so in obstetric terms, I’m ancient. Not really, but I am AMA (Advanced Maternal Age). I will be nearly 37 when this baby boy is born. I didn’t even want to be pregnant – in all honesty. I have 5 beautiful children, and mentally I was so done. I closed the chapter on my baby birthing years with the fabulous delivery of my son in 2010, the day after my 33rd birthday.

I was in the midst of an epic weight loss battle – and for once, I was winning. Around May of 2013, something clicked for me nutritionally, and I found out that eating a high fat, lower carb diet rich in nuts, avocados, coconut, eggs, full fat dairy, animal protein, all the veggies I could handle and limiting my grains and fruits would catapult me closer than I ever thought possible to my goal.  By December 2013, I had lost 55 pounds, with a mere 50 to go, and I was feeling great.  I was looking forward to January, simply because our new insurance would kick in, and the first thing on our list was a checkup, followed immediately by a vasectomy referral.

And God laughed.

Apparently, losing a large amount of weight, eating a very clean unprocessed diet, and working out even moderately would be enough to trigger SUPER FERTILITY!

So, a few days before New Year’s, it suddenly dawned on me that I was feeling run down, HOT, and I was “late.” I knew.

I am ashamed to admit that I cried for days. Like, ugly cried. My kids were scared to death, and that made me feel worse. I went through the motions of the holiday. I went back to work. I started bleeding – and I felt…relieved.  Then immediate guilt. I apologized to everyone – my unborn, my heavenly Father, my husband… I mean what was wrong, really? So it was horrific timing. In the end I realized it was just fear and selfishness on my part. Obviously, He knew I could handle this – albeit badly. The bleeding stopped.

My first appointment was the day of Snowpocalypse 2014, the day the south stopped.  I met with my new OB at a completely new practice thanks to the limitations of my new insurance, and I didn’t like him at all. The short of it was that I was old, fat, and destined for a repeat c-section that I should just schedule now. Oh, and he was “sure” I was a diabetic, so we ran tests to see how “bad” off I was. He took forever, so I made it as far as my office unable to get home. Things were going ‘super awesome.’

Not surprising to me, I was not a diabetic. My hA1c was normal, so things were looking more promising. Maybe I could avoid the major hassles of gestational diabetes this time. I wasn’t as optimistic, but my mom sure was. I spent so much time “praying the diabetes away” when really it would prove providential.

My 12 week genetic scan was uneventful – my Nuchal Translucency measurement was 2.1mm. I had never had a reading over 2mm before, but the Perinatologist assured me that there were no other markers for any problems, but I should probably take a Harmony test to be sure. Harmony tests are new – it’s a blood test that looks for placenta DNA and can separate it from mom’s blood and look for the 3 most common Trisomies 13, 18, and 21 (aka Down Syndrome). I had my blood drawn, and the courier never picked it up. I didn’t find this out until a few weeks later, and in the interim, the government had decided I couldn’t use my private insurance anymore, I had to use Medicaid, and Medicaid wouldn’t cover the Harmony blood work. I took this as a sign to “let it go” and I didn’t pursue any further genetic testing. My 19 week “big ultrasound” showed a very healthy baby boy. Measuring and looking perfect! I also failed my 1 hour glucose test so badly that I just went straight to the monitoring – which I was already doing on my own. I soon started on insulin for fasting blood sugar control.

I met again with the Maternal Fetal Specialists at 22 weeks for a baseline growth scan. These would be repeated monthly to track growth as I have a history of large babies, and Gestational Diabetes certainly doesn’t help. At 21w5d, he was measuring 21w5d, and all was well. See you in a month.

On May 30, 2014, I was 25w5d, and I think he was measuring 25w2d – but my memory is a bit foggy on the details, because this is the day I would get up close and personal with a completely new part of my son – his lateral ventricles. You have 4 ventricles in your brain – but I was fixated on two large ones, side by side, as my Perinatologist pointed out all the structures that could be seen. It slowly started to sink in that there was a “problem” and this wasn’t just a detailed show and tell special. Once the left and right vents are formed in the first trimester, their width is fixed at around 6mm – with a cutoff of 10mm for “normal”.  After what seemed like 59 million measurements, we were told that the left and right vents were measuring 12mm to 12.5mm. Mild Ventriculomegaly.

The worst part for this “Type A” personality, was the “see you in 2 weeks so we can see if they are growing or stable”…say what? No one could tell us what was causing it, what it meant, what it would do – other than it “could” be Down Syndrome, it “could” be the early stages of hydrocephalus, it “could” progress, it “could” remain stable, he “could” be developmentally and/or cognitively delayed…the diagnosis of “could”.

More ugly crying.  I questioned, out loud, “And what was the point of alllll of this?!” I might not ever get an answer, and I’m learning to be ok with that.