Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

A Quick Rundown

One of my readers asked about Abby's ventricular measurements so I thought I would do a quick recap of Abby's condition for any new readers. I just found a group that is devoted entirely to moms (or moms-to-be) with babies diagnoses with ventriculomegaly. I know that what I was told was so devastating and grim. I would like to paint a much brighter picture than my doctors did for me.

After many, many, many infertility treatments (IUI & IVF) and a miscarriage I finally became pregnant with triplets. We lost baby C at the end of the first trimester. Because I was considered a high risk pregnancy (multiples, early high BP and GD) I was monitored closely. At my 17 week scan the u/s tech detected what we later found out was a ventriculomegaly (enlarged ventricles in the brain). They diagnosed her with aqueductal stenosis, hydrocephalia and ventriculomegaly (she measured 14mm at that point). My perinatologist sat us down and explained that we should think about terminating as her outcome would likely be grim. He said that they never know but she may never walk, talk, or function for herself. Thankfully Brian quickly told the doctor that terminating was not an option and that was the end of that. I referred myself to CHOP immediately.

At 21 weeks gestation CHOP had me do an advanced MRI, cardiac studies of both babies and a high level ultrasound (which was a very uncomfortable 2 hour procedure). Then I met with the Fetal Diagnosis and Treatment team. They explained that she now measured 12mm and they found no stenosis. She did have extra fluid so they felt a shunt would be probable. I spent the rest of my pregnancy feeling nervous about what Abby's life would be like but knowing that I was blessed with the lives of these two precious girls.

The girls were born via c-section at 37w 2d and went to the NICU immediately. Gracie looked great (weighed 5lb 14oz.) and was breathing well. Abby was smaller (4lb 14oz), blue and having trouble breathing. Fortunately she never needed intubation. Gracie was in the NICU for a week for jaundice, weight loss and my gestational diabetes). Abby stayed 2 weeks for jaundice, weight loss (went down to 4 1/2 lbs), and feeding issues (NG tube). They scanned her brain in the NICU and found that the ventricles were mildly enlarged.

Abby did not meet any milestones so we started PT at 4 months. She also had strabismus (both eyes crossed in) that required glasses and eventually double eye muscle surgery. Our pediatrician did a pretty crappy job of monitoring her condition so at 4 months I decided to call the Fetal Diagnosis team at CHOP and see what needed to be done. We went back to CHOP in an emergent situation (rapidly increasing head size) and were seen by the neurosurgery team. We were referred to neurology and had a CT and MRI done. They found that she has enlarged 3rd and 4th ventricles, increased fluid in the frontal lobe and posterior corpus callosum hypoplasia/dysplasia (which means the connective tissue between the two halves of the brain is thin in the back).

Our neurologist referred us to audiology (for assessment), ophthalmology, neur-ophthalmology (which resulted in her eye surgery), Early Intervention (which has been doing since 9 months) and assessments for OT and speech.

Thankfully the outcome we expected has been shattered by all that Abby can do. She can now crawl, she babbles, she has use of all her faculties and is on target for a very normal life. She will possibly have learning disabilities (which is something that comes with her diagnoses) as well as continued tone, balance and motor issues. Considering our doctors told us she may not live after birth these things that we deal with seem so minimal.

1 comments:

Web-Wahm 7:10 AM  

Hi - I'm 'the reader' who left a comment last time (and I'm Zacs-Mum) on the forum...

Thank you SO much for this post!

I'm having my baby tomorrow...and the waiting is going to be over, now it's time to really see what's what and move forward.

Thanks again :-)
Adele

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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