I went back and found all of my posts on the i-am-pregnant.com website. It's interesting to read how I was feeling as we went through everything.
August 24, 2010 (This was four days after diagnosis.)
My husband and I are 21 weeks pregnant with our second child. We were ecstatic to learn that we were having a girl four days ago. About 20 minutes after leaving the ultrasound room, we were pulled aside and told by a doctor that there were some concerns about the baby and that we needed to go have a level 2 ultrasound done. There the doctor said that she was 90% sure our daughter has what she wrote down as 'massive ventriculomegaly.' I could see something flapping on the monitor, and she told me it was the choroid plexus hanging down into the fluid filled around. She told me that I had an option to terminate the pregnancy. I declined. I believe it is only God's decision to take her out of this world. I agreed to an amniocentesis after speaking with a genetic counselor. She mentioned absolutely nothing about the measurements of ventricles, nor did I ever hear the word 'hydrocephalus' come out of her mouth. After doing some research, I called her back that night and wanted to know very badly the measurements of the ventricles. She told me the left was 23mm and she said the right was somewhere around the same. I have a regular OB appointment on Sept. 3. On Sept. 7 I am being told to have an in depth ultrasound of her heart done, to make sure everything is fine there. They said she looked fine everywhere else, but often when there's a problem with the brain, there is also a problem with the heart. So they want this done to make sure everything looks normal. On Sept. 21 I am having an ultrasound with a specialist. My husband and I, and most of my family, are completely devastated by this news. My questions right now are,.. is her case comparable to these babies who turn out to be happy children? What is her chance of survival? I am feeling so lost, in such despair.
September 7, 2010
I had a fetal echo done yesterday so it is looking like this is isolated so far because everything with her heart looks great! She still kicking a lot and growing fast. I still have no clue how her VM is progressing. This is what I want to know the most. But they are waiting an entire month to look at her brain again from the day of diagnosis!! Shouldn't they be monitoring this much closer than a month later to watch what it's doing? A quick reminder to those who didn't catch my first post; my daughter was diagnosed with massive vm at 20 weeks u/s with 23mm vents. Amnio results returned normal chromosome structure and no infection.
September 21, 2010
I had the first ultrasound since diagnosis today. My baby girl's left vent measured in at 24 mm which is about the same it was a month ago, but the right vent has grown to 36 mm, whereas it was symmetrical. The doctor told me today that there's still a chance that she has holoprosencephaly, which a fetal MRI can hopefully determine if she has or not. The doctor told me today that it isn't the size of the ventricles that determines the neurological outcome of the baby, but the underlying cause. If she does have holoprosencephaly, then the outcome is very grim. If she does not have it, and the problem is caused by a blockage of the aqueduct, then there is a lot more hope. I am 25 weeks along now, and her head circumference is as if I were 30 weeks. I've been keeping the best positive mental attitude possible, but today is putting a strain on my state of mind. She still kicks me lots, which lets me know she is going to be a little fighter. We are two strong girls, we just have to hang in there.
October 7, 2010
We had our fetal MRI today. The radiologist and his colleagues all agree on two things. One being that she does not have holoprosencephaly. The second being that her ventriculomegaly is caused by aqueductal stenosis. The neonatologist I spoke with appeared to be very hopeful. This is the best news we could have received today. :)
November 10, 2010
Alright, I am 32 weeks pregnant now. To give a quick update, my baby girl was diagnosed with ventriculomegaly at our 20 wk u/s. I had another u/s today and her measurements are now really, really big and scary. Her left vent is 28 mm and the right one is now 63 mm. Her head circumference is 39 cm. and she is head down. The u/s technician said she weighs around 6 lbs. The plan is to do a c-section at 37 weeks, but with these new measurements I got today...... I want her out now. </span><span>They didn't tell me what her head circumference meant today, but I looked it up with I got home. A normal, term newborn baby's head circumference is between 33 cm. and 38 cm. So she is 32 weeks old in gestational age right now, and her head is technically that of a full term baby. I feel that the longer her hydrocephalus goes untreated, the higher the chance for her to have irreversible brain damage. I spoke with one of my genetic counselors today and she is discussing the u/s results with our MFM doctor to determine if a c-section would be best sooner than later.
December 11, 2010
Marlena Nichole Musgrave was born at 5:18 PM on December 7th. She weighed 7 lbs 13 oz and was 19 1/2 inches long with a head circumference of 42 cm. She received a VP programmable shunt about an hour shy of her being a day old. She is currently doing well. She is on room air, cries when she's not happy, has great eye movement control. We are currently working on getting her feedings going well. She is taking a bottle, but still is getting the hang of it. She is perfect to me. Her little misshapen head has a couple spots of bone protruding it seems like those weren't there before surgery and her head is a bit mushy in the back now which is a good sign I think.