Monday, July 02, 2007

(Mild) Ventriculomegaly???

My plan for this morning was to get my Glucose Tolerance Test done, in time to go to my Maternal Fetal Medicine Dr (MFMD). appt for an ultrasound, then see my Ob/gyn after to discuss my previous appt & do a Ob check-up.
It all started out well. I got the GTT done, went in for the ultrasound and the baby's heart rate was good (146 bpm) and he weighed in at 2 pounds 1 ounce. His foot, from heal to toes, measures 2 inches. He was showing off as usual, and gave us a big opened-mouth yawn, he even had his eyes open! Oh, and my Dr. gave us a picture of the strands of hair that can already be seen on top of his head! SOoo cute! (I will post pics later.)
My dr. measured everything, and all was normal except for the fluid around one of his ventricles in his brain... The normal range of fluid is a 1, and he's measuring a 1.2-1.3. Right now its a "mild case" but the lets just say there are a lot, A LOT, of scary things that can become of this... Absolute worse case scenario, we could lose him. I'm going to make this next part of my blog entry vague because I'm trying to keep my stress level down, and trying not to cry. If you want to learn about what he (might) have you can goo.gle it... Its called "Ventriculomegaly." I will say, I am scared. I love his little boy with all my heart, and as his mommy I want nothing more than to protect him and for him to be ok. I DO have extreme faith in God, that everything will be ok, but that doesn't stop my tears from falling. I hate that this is even an issue we are up against, but I know that if "He leads me to it, He will lead me through it." I know you all have been praying, and I couldn't be more thankful. Please keep sending up the prayers for my little boy.
My last appointment that we went to (that wasn't planned) was back to the lab for more extensive blood work. My MFMD needed "TORCH titers-pronounced 'tighters' " drawn and this was to see if I have any kind of bacterial or viral infections present in my blood that we don't know about, that may have crossed over into the baby therefore causing this elevated level of fluid in his brain.

My next step is: My MFMD is going to refer me to have a Fetal MRI done at Texas Child.ren's Hospital in a week. That way we will be able to see what this fluid is going to do from now until then. Two weeks from then, I'll be going back to MFMD for another ultrasound to see if there was any change from the MRI till then. I guess so we can try to detect a pattern to see if its getting worse, better, or staying the same over a 3 week period of time.

My job for the next few weeks is: Try to stay calm, optimistic, pray. And try not to stress about the unknown. God has His plan for him, we just have to trust Him.

9 comments:

Candice said...

I know how scary this is for you!! I had the exact same thing happen to me, diagnosed around 20 weeks or so (at a 1.1-1.2). Thankfully the situation resolved itself around week 30 or 31. I was told this can be fairly common but it often resolves itself. Now, my son is 15 mos old and perfectly healthy and talking up a storm! Try to relax for the baby's sake. Try not to research it too much until further test results come back. How does his heart look? If his heart looks good there is even less of a risk. Good luck!

Kirsten said...

Man, we just can't have it easy, can we?!?!?!? I am so sorry you have to worry about this but I know your faith will help you through. I don't know why we keep hitting these "speed bumps" along the way but I am so thankful we both have our little ones still growing inside and will definitely keep your little guy in my prayers! BTW, did some searching...you probably found this site, I think it was number 3 or 4 on a google search but here's what I read:
Long-term outlook
The long-term outlook for a child born with mild or borderline ventriculomegaly is excellent if it is an isolated finding. Approximately 90 to 100 percent have a normal outcome. giving the child an outstanding quality of life and a normal life expectancy. However, it is recommended that these children receive follow-up care and evaluations to monitor the development of the ventricular system to ensure that the finding does not progress further. Without intervention, a small percentage of these children may go on to develop hydrocephalus.
Hope that helps you feel a little better :)

Jennie said...

Candace,
Thank you for the kind words. To know that you have walked in these shoes and your son had a positive outcome is VERY encouraging and reassuring. I'm hoping this will all resolve itself, like it did for you. His heart & blood flow in the heart looks great. All 4 chambers, aortic arch, foramen ovale, it all measures to be normal. Yesterday she spent a long time looking at his heart, and said it all looks good. Hopefully he'll alright... Its just scary being in this situation.

Kristen,
I didn't goog.le it yesterday because I was scared, ya know how extreme the results can be on some websites. It seems everything symptom I ever goog.le can end in death. So I tried not to look to much into it. But reading that 90-100% can have a normal outcome is reassuring. Thanks.

Sharee said...

I love your attitude and can most definitely relate to your tears! Be encouraged ... I'm believing with you that all will be well, friend.

With God nothing is impossible.

Not even ventri-crazy!

Hugs

Jenn said...

No words. No advice. Just know that I am thinking and praying for you and your little one. Stay strong.

bookie_224 said...

Dear Jennie,

I completly understand your feeling because my little baby boy in mild case too he at 1.5 yesterday. (he is 25 wk and 3d) I have follow up with my ob next Tue. I'll will pray for us and all mommys over the world that have same problem. Good luck too all of us.!!!

Anonymous said...

i really feel for you i went through this in both my pregnancys it was awfull my daughter did have hydrochephalus but she is 9 years old now and she is wonderful she had a tough start but is like any other child now i went through hell again 7 years later with my son. we were told worse this time he is 2 yerrs old now and absolutly nothing wrong with him at all he is wonderfull youre precious baby will be fine too keep your faith. someone who cares x

Anonymous said...

I'm depressed that my 15-month old son is diagnosed to have "mild prominence of ventricular system" last week... This is an isolated finding and the rest of the MRI scan results are all normal. He's showing delayed milestones but is very much receptive to visuals and sounds. The doc advised us to use Valparin and that we'll have to undergo regular tests etc for a year (increasing the time interval, weekly, monthly & then quarterly). He'll be undergoing therapies for general development, with a good amount of physical & mental exercises. I as a mom, am more than willing to do it all and give my best of attention, love & care... but please... is there an assurance that he will grow up normal... just like any other boy his age...? Is is asking God for too much?? I'm so worried... What other care should I take in order to make him recover better?

Anonymous said...

Anyone can help me? I want yo know of true cases of children over 5 years old who had ventriculomegaly of between 12-16 mm