Monday, December 29, 2008

The Day a Blog was Born

This day marks the birth of a blog.....On this day, my life was turned more upside down than I could ever imagine, and I decided that I needed to capture the moments, the emotions, and the struggles in way that would be cathartic for me, enlightening for others, and hopefully informative for mothers in similar situations. Read on....but be warned this is a long (but crucial!) entry....

Today was the BIG day....our second trimester ultrasound. Chris and I were so excited to find out if we were having a boy or girl. My mom and Braeden came along for the fun too. However, a day that started off full of lively optimism dramatically turned into a day full of utter despair.

The ultrasound starts off like another other routine anatomic scan. I drank a ton of water....and some orange juice in hopes that our baby wouldn't be shy! My bladder ready to burst, I hopped on the exam table ecstatic that the day for our big ultrasound was finally here. My mom had the video camera pointed right at the video screen so as not to miss a second of it. The ultrasound tech started the scan, but the baby was very curled up. Great, I thought, it is going to keep its private parts a secret.....Little did I know I had more to worry about....

The scan continued...The tech took the measurements that she could. Some things she couldn't get a good view of because of baby's position. She told me to empty my bladder and walk around in order to get the baby moving. I did as I was told, and she returned and continued poking and prodding me in attempts to get baby to move for her. Not much luck...but I didn't really think anything was amiss. The baby has been moving like crazy, and the heartbeat was nice and strong.

After trying another 15 minutes to get the right views, she told me to again walk around and try to get the baby moving. So I danced with Braeden and got a little silly.....As I was shaking my booty, the u/s tech walks in with Dr. M (Chief of OBGYN at the hospital). I quietly moved over to the table with my mind racing about what could be the matter. Chris and my mom did not seem phased by the turn of events...I don't think they realized that a stubborn baby is not a reason to have a perinatologist come in to do the scan. As Dr. M focused on the brain of my baby, I was devastated. The 15 minutes he spent trying to get the images he needed felt like an eternity.

Finally, he told me that he didn't get everything he needed, but he definitely had a big concern. In a straight forward, here are the facts, he informed us that the lateral and third ventricles in the brain are dilated. The high side of normal for a lateral ventricle is 10 mm, and our baby's measured over 12 mm. Unfortunately, because he couldn't get a good look at the cerebellum and spinal cord, he could not rule out certain conditions like spina bifida (I will call SB) or dandy walker (I will call DW). If the cerebellum and spine are found to be normal, he says the dilated ventricles most likely are due to aqueductal stenosis (I will call AS). I won't get into the details of what I have learned about those condition....I will wait until our next ultrasound when we hopefully can get a better idea of what the problem is.

So you wonder what is the big deal about the ventricles in the brain being big? Here is a little anatomy review: The brain continuously making cerebral spinal fluid (CSF). CSF is produced in the choroid plexus, which is found in the lateral, 3rd, and 4th ventricles. The fluid is normally drained from the lateral ventricle to the 3rd ventricle via the Foramen of Monro. The 3rd ventricle then connects to the 4th venticle by the Aqueduct of Sylvius. From there, the CSF can flow into the spinal cord where the fluid is reabsorbed into the circulatory system.

Problems arise when there is an interruption in the drainage of the CSF or excess production of CSF. The fluid backs up into the ventricles causing them to appear enlarged on the ultrasound images. If the condition progresses, it can lead to hydrocephalus ("water on the brain"....really "CSF on the brain"). In hydrocephalus, the head measures bigger than normal. This is dangerous because it can lead to an increase in pressure in the brain (increased intracranial pressure), which in turn can cause neurological problems.

Because I am a nerd, here is a diagram of the brain:
According to Dr. M, there is a 1% chance that the baby could have a chromosomal abnormality such as Down Syndrome, Trisomy 13, and Trisomy 18 (the latter two which are considered incompatible with life). An amino is generally recommended to rule out any chromosomal abnormalities because if there is something amiss chromosomally, the prognosis will obviously be different than with AS, SB, or DW. I am just over 17 weeks so I was told that I need to decide if I want an amnio right away in case something is severely wrong, and I wanted to terminate. Never could I have an abortion so I declined any further discussion of an amnio in favor of an indepth pediatric evaluation at birth. I just could not risk the health of my baby (who by all accounts could turn out normal) by having an amnio right is still too risky. Maybe in the 3rd trimester, I will reconsider just to give myself peace of mind that we are not dealing with Trisomy 13 or 18.

At the talk of termination, my mom who was not holding up very well started to break down.....Surprisingly, I was calmly discussing the situation with the doctor trying to not let my true emotions show. Anyone who knows me knows I am overly emotional and not above crying in public for the littlest things. Plus, I am a hormonal, pregnant, sleep deprived mess....You would think the tears would be flowing....but for some reason I bottled everything up. I don't know if it is because I was discussing medical stuff. Maybe my experience as a critical care nurse allows me to segregate myself from the situation. At work, there is rarely a situation that causes me to cry at work....I am not the nurse that cries with her patients and family (which I actually feel really guilty about). I think that I am a compassionate and competent nurse, but because of that latter quality, I don't want my emotions to interfere while on the job. However, this baby is not a is my own child....The doctor and u/s tech must have thought that I am a horrible mother.....
Dr. M. boiled down the situation with a statistic that is not sitting very well with me....1/3 of babies with the enlarged ventricles (ventriculomegaly) will have normal neurological development, 1/3 will have mild to moderate neurological impairment, and 1/3 will have severe neurological impairment. Hearing that there is a 1/3 chance that my baby will he severely handicapped was very hard.
A big question I am sure on everyone's mind (mine especially) is what could have caused this? Dr. M reassured me that there is nothing I could have done differently. Most likely something by chance went awry when the brain was developing. Infection, tumor, and stroke could be other possible explanations. Despite the reassurance, I still fear that I caused this....Did I not protect myself at work properly? I could have been exposed to x-rays, chemo drugs, or infections.....
As for the course of action, Dr. M recommends serial ultrasounds....every 3-4 weeks to track the progress and look for any other abnormalities. We will go back in a couple weeks to see if the baby will cooperate for us. Fetal MRIs can be done, but he says that in his experience they rarely offer more information especially because of how high-tech ultrasounds are. Of course, he mentioned an amnio is something that is usually recommended. He said that for now, I can still see the midwives as long as I am being followed by him with the frequent ultrasounds.

He touched on the treatment options....mainly surgery after birth to place a shunt that will drain the excess CSF. As we get closer to delivery day, we will know more information...if a shunt might be necessary, if I need to deliver at Strong (the bigger hospital with a NICU and where the surgery would be performed), if a c-section is in order, or if early delivery will be beneficial.

I intended on going on a shopping spree after the ultrasound....since we couldn't find out the gender and given the disheartening news, we decided to head home. As Chris was driving on 490, I broke down. I started sobbing uncontrollably. I cannot even put into words the emotions I feel right much disappointment, sadness, hopelessness.....I love this baby so much and want more than anything for it to be healthy and happy.

After all of this, I need to vent on one more thing (as petty as it might sound)....I only got 3 blurry u/s pictures! I know the situation was not the most common experience women have at a routine u/s...but come on! This is my baby.....I love this baby just as much as any mother loves her normal, healthy baby. Here are the pictures I got:
She's Definitely Got Heart!

Itty Bitty Toes!
Brainy Baby

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