Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Ventriculomegaly Update

on April 16, 2013

img013Click for Part One.

Click for Part Two.

We had two doctor’s appointments this week since we are out of here next week. We visited the perinatologist yesterday and had an ultrasound done for all the measurements, and today we met with my regular O.B. for a bit of not much at all. There are no major new discovers about my baby girl and her ventriculomegaly, which if you’re just tuning in, basically means there is fluid in her brain that is not draining properly, so it gets backed up in the ventricles of her brain thereby causing swelling where there shouldn’t be any.

Two things of note from this week’s appointments: First, the swelling has increased to about 13 mm. Just to recap, it’s not considered “severe” until the ventricles are swollen to at least 15 mm. Even though the swelling has increased, my baby’s overall head circumference measures normal size, which makes the doctor think maybe the ventriculomegaly is the result of fluid filling in where a missing brain structure should be. He said if it were just a blockage, he might expect the head to measure large. However, he also said the swelling isn’t that pronounced so he still can’t say what the heck is going on. Maybe possibly a genetic disorder that won’t be identifiable until the baby is born.

Second, my baby now weighs about 2 pounds 2 ounces! That is awesome because she gained almost a full pound in three weeks whereas during the last three week interval, she barely gained half a pound. So she’s maintaining a growth curve, just at the small end of the spectrum. On the flip side, though, her abdomen is still measuring small compared to the rest of her body. The doc can’t say what the heck is going on.

Can anyone say “mystery baby” because that is exactly what is happening here.

Jeremy and I have been praying to Saint Maria Goretti to intercede for our baby, and we even made a little pilgrimage a couple weeks ago to Chimayo, NM where we scooped up some Holy Dirt and I applied it to my tummy. Also yesterday, I drank some water from the miraculous spring in Lourdes, mixed with a couple drops of St. Walburga oil. If you’re playing along with Catholic bingo, those are all elements that have historically been associated with miraculous healings. In light of all that, I would like to call MIRACLE for baby’s growth, since she weighs over 2 pounds and that would have been impossible if she had kept at her previous rate of growth. She really stepped it up. She has also been extremely active. I can feel her on and off for the entire day, and sometimes she moves around so vigorously I can see my tummy jumping. Her heartbeat is very strong; except whenever anyone tries to listen to it, she crawls away and they have to chase her around the womb with the doppler wand.

I really do feel hopeful about the outcome for our precious daughter. So many people are praying for us and for her, and the ultrasound scans continue to reveal a baffling mix of good and bad that just doesn’t seem like it should be possible. If she’s missing a brain structure, how can she be so active and strong on the heartbeat monitor? If she has swelling in her brain, why doesn’t her head measure larger? If her nutrition is poor (small abdomen) why does the cord, placenta, kidney function, fluid in the womb, everything, look normal? If she’s supposed to have growth restriction, how can she be maintaining a curve? This condition is commonly caused by chromosomal abnormality or in utero infection, neither of which are the case here. What is going on?

Seriously, I call MIRACLE. Just you wait and see.

Advertisements

8 responses to “Ventriculomegaly Update

  1. Kathy Schwager says:

    So glad to hear that Baby Girl is growing. That has to be good news – dare I say a miracle?

  2. Daphne says:

    Sounds like good news to me.

  3. Sounds good. We love you all and we keep praying. Aunt Marilyn and Uncle Bob

  4. Pat Francisco says:

    Judy and Jeremy, I am going to pray for you baby girl I recently had a wonderful miracle happen. Someone who was had plans to abort her baby changed her mind after I prayed about it. I am hoping that the Lord will bring you and your family blessings and strength and understanding for your precious little one. Also that Stephen will be the greatest big brother ever. God Bless you both….we miss you here in Billings.

  5. […] Part Three: Ventriculomegaly Update. […]

  6. […] Part Three:¬†Ventriculomegaly Update […]

  7. Sara says:

    Hi there I am in a very similar situation. I discovered at my 20 +5 week scan that my baby girl has isolated bilateral ventricles measuring 11.3. I then had an MRI which confirmed this but showed no other abnormalities. I had another ultrasound level 2 at 23 weeks which showed an increase to 14mm, however at 24 weeks, they were measured at around 13mm by a different sonographer. I would like to know your outcome of this? How is your baby now? Have you delivered her?
    Regards Sara, North of England

    • judy says:

      My baby was born on June 17. Genetic testing has confirmed she has a rare chromosomal anomaly that has very little research and information associated with it. She is doing very well so far! She is still a patient at the Neonatal Intensive Care Unit, but she is getting ready to be sent home soon. She has responded well to treatment. Actually, the ventriculomegaly has not figured very prominently in her treatment so far. She will have an MRI scan tomorrow to check up on it. The condition is almost certainly related to her chromosome issue; enlarged ventricles are often associated with chromosome problems. My daughter’s prenatal scans showed one lateral ventricle measure as much as 14 mm and the other holding steady around 12 mm. If you are concerned about your baby’s diagnosis you could get an amniocentesis which would tell you if she has any genetic abnormalities. As for me, I am glad we did not do extensive prenatal testing because that would have only extended the worry time and done nothing to improve her outcome. We are able to take things one day at a time and enjoy our daughter’s little smile and appreciate every little bit of progress. I like that her outcome is not already determined in my mind. My daughter was also born with malrotated bowels, something called volvulus I think. She needed surgery immediately when they discovered this condition on her third day of life. If your baby does have a genetic condition, just be aware of other issues in her body that may not be obvious. All my daughter’s prenatal testing focused on the ventriculomegaly, so the condition with her intestines was a complete surprise to me and actually much more of a serious problem then the enlarged ventricles. Luckily the surgery was a success and my baby’s intestines work beautifully now.

      Good luck to you and your baby. I will be thinking of you! Thanks for visiting my blog and please feel free to read my other posts about my daughter. She more or less dominates the topics around here! I would be happy to keep in touch with you if you would like, either on the blog or my email is judyschwager@gmail.com

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: