Monday, September 27, 2010

30ish weeks and counting

Back from the doc was ok, not great.  They can see progression, which is really what we didn't want...we want STATUS QUO.  Her ventricles have enlarged, which indicates not only her normal growth as a fetus, but also more significantly that she will now need a shunt placed in her ventricle right after birth.  Kids with a neural tube defect need this something like 80% of time...I was hoping to be in the 20% group.

They are also now thinking that they see some clubbing in her left foot...we had avoided this until know....and usually if it hasn't shown up by this point, then it's been avoided altogether.  This will mean she will need some corrective braces at minimum.

Although these are all normal progressions for Spina Bifida, I had really been praying for her condition to remain stable...Brian really takes it all in stride better than I do...he knows we'll be able to handle anything thrown at us....I know this too, I'm just slower to come to the realization.

On a bright note....everything else looked great...she's actually measuring a bit bigger than her 30 weeks (like at 32 weeks) which is good news for a baby that will be born early.  Her heartbeat is super strong too....she's a fighter for sure!

More later....if I can think of anything else!

Tuesday, September 21, 2010

For family and friends

If you are interested and/or's the site I read most days that is for folks dealing with the same situations as Brian and I are or will...


Friday, September 17, 2010

Flash-back...We were ecstatic to find out we were pregnant in March of 2010 after a loss at 10 weeks in September 2009.  "Woo Hoo!"...I thought.  Now it was onward and upward!  We passed each pregnancy milestone fairly uneventfully....I swore this one was a boy (just like the my first daughter :-)).  So much for mother's intuition, huh?

Then, on Tuesday, June 29, 2010 we were scheduled for our genetic counseling appointment followed by our 18-week ultrasound.  The counseling appointment was fine....she went through her list of things to tell us and we were told we had really no strong risk factors or genetic connections to mark anything of note.  But, still, for whatever reason, I fell apart.  I broke down in front of the counselor and my husband saying I KNEW something was wrong...I suspected Down Syndrome.  The counselor tried to ease my husband looked at me like I had 3-heads!

So, we went in for our ultrasound and the tech said "Everything looks great for your little girl!"  We spent 7 minutes planning her future....then the doc came in.  He silently studied the screen and I nervously looked back and forth between my husband's face and his...something was wrong.  He said...."Your daughter has Spina Bifida." 

Flash-Forward...since that day...we have spoken to many people about this Dx and found out so much more about our specific case.  Our daughter has a bony lesion at L4 and a skin lesion at S1 or S2.  We are current participants in the MOMS study at CHOP (Children's Hospital of Philadelphia) and recommend that anyone facing this diagnosis contact them...even if only for information purposes.  They are a wonderfully talented and professional staff that patiently answered all our questions.

So, once again....onward and upward.  Next appt.-September 27, 2010