 I am an East Coast expatriate hiding out in the Midwest... I am an urban gal living in the suburbs and occasionally hiding in the country I am a yoga practitioner, fitness enthusiast, believer in the mind-body-spirit connection... I am a mid-life "revert" to the Roman Catholic faith in which I was raised and which has become an enormous source of support, encouragement, inspiration, and joy in my life... I am a mom, sister, daughter, and wife... I am an explorer; adventurous and curious about the world and people around me... I am educated in the formal sense but I gain insight through everyday living... I created this blog at a time of great fear and apprehension in my life. I chose to sustain it because of the discoveries about myself and the world around me that it has revealed. What you can expect to find here: the documentation of a love-hate relationship with the greater Philadelphia area reminiscing about the good-ole-days (the 80's!) complaints about my various ailments and injuries, both real and imagined pictures and stories of gardening, decorating, shopping, sewing my love of irony links to kooky news stories way too much scatological musing for sane people
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Friday, September 16, 2005
Sometimes I feel Like Krusty The Clown...
...becuse he has that pathetic, defeatist way of muttering , "Awwwww, CRAP!"
Needless to say, today's ultrasound and echocardiogram were not "uplifting" so to speak.
As I figured, baby has a complete AV canal defect plus the likelihood of a Tetrology of Fallot - which requires immediate intervention after birth to put in a shunt to aid the too-small pulmonary artery.
The cardiologist was WONDERFUL and actually, quite positive in that she encouraged me by noting, "These problems are worrisome but we (cardiac surgeons) fix them all the time and get it done well." She must have spent 90 minutes running tests, drawing diagrams to explain everything to me, answering my questions, addressing my concerns. So YAY for the kindly, professional, smart-as-a-whip pediatric cardiologist.
OK, so his hygroma has resolved (yay!), his kidneys, stomach, spine and skelatal formations all look good...he has these heart defects which are noted as "fixable"... and then I get the big whammy when the final doctor for the day comes in to visit.
He scans my tummy again and rather coldly informs be that the baby has hydrocephaly - fluid in the brain. Friggin' fabulous. He goes on with his discouraging dicourse by noting that a shunt can be put in after birth to drain the fluid if it starts to put pressure on the brain, but that (here is the clincher) in a nutshell, since this baby is already handicapped from an IQ standpoint due to the down syndrome, the hydrocephaly can likely shave off even more IQ points.
Ugh.
NOW I am feeling that "sense of loss and mourning for hte perfect child you won't have" that many parents describe when getting the news of a downs diagnosis. I was kind of excited for the challenge and seeing how far my special lil' "extra chromosome" guy could reach. I envisioned myself taking him boogie-boarding and shedding a tear at his first game of T-ball, where EVERYONE is cheering for "the special kid."
But now I'm being told that off the bat, he will likely be "more" retarded. My concern, genuinely, is that he could suffer further impairment to the point of never being ambulatory, able to use the bathroom, able to feed himself. I.E. - Nursing home fodder.
I prayed ALOT and very specifically to have the hygroma resolve. The odds were against it and VOILA! It's gone. Hooray. He also had fluid around the heart that has also resolved. I'm gonna use every rosary bead in my Catholic-girl arsenal, every drop of holy water in the font at Church, and every prayer card to focus solely on praying for spontaneous resolution of this brain thang. If it doesn't "work", then no loss...but besides keeping myself healthy (whcih I am doing!) its all I can offer right now in terms of "mothering" him.
Posted at 04:44 pm by brandy101
 |  |  | Em September 23, 2005 11:24 AM PDT
Respect to you mummy brandy. Some doctors are the pits and some are just wonderful. YOU ARE WONDERFUL & AMAZING. :-) |  |
  |  |  | Lou September 20, 2005 09:24 PM PDT
I am so sorry that you are going through this! It's heartbreaking to realize your child isn't "normal" even when it's on a minor scale. You sound so brave and faithful! This lil' babe may have problems, but is very lucky to have you for a mommy. |  |
  |  |  | AbbyNormal September 20, 2005 01:42 PM PDT
I love your resolve. I nominate brandy Mother of the Year!
And yes, many babies have had no side effects from hydrocephaly at birth. The pediatric cardiologist also seems very positive. Nice to know you're not alone, and this isn't anything new and unusual, huh?
I'm sending positive energy your way too, picturing the little guy whacking a homerun! |  |
  |  |  | Giggles September 19, 2005 12:26 PM PDT
Oh sweetie....you are such an inspiration! So strong and full of faith!!! I will keep you in my prayers....you and baby. *hugs* |  |
  |  |  | loz September 18, 2005 01:35 PM PDT
he's come through all that - he's going to come through this too. excellent news from the other folks here, and I'll be praying & sending Reiki as usual - and will focus on this specifically as well :). keep your chin up & your faith high!
l.
xxo |  |
  |  |  | chrysalis September 17, 2005 10:48 AM PDT
More anecdotal hope: a nephew of mine also recovered from hydrocephaly at birth.
You're on the prayer list at our church too, Brandy. Keep praying! I'll repeat something I said before, because I believe it: if things weren't meant to be this way, they'd be different.
Maybe this is here to teach you to pray ... ??? who knows. But I'm sure praying for you. |  |
  |  |  | Lyly September 16, 2005 09:55 PM PDT
A boy down the block from me had hydrocephaly at birth. They put in a shunt, drained the excess fluid, and he's not shown any sign of IQ loss/retardation. If there was a drop of IQ, it hasn't shown up.
Your son keeps overcoming obstacles, and I'm sure that he will overcome this one, naturally or through surgery. *hugs* |  |
  |  |  | ssprite September 16, 2005 07:32 PM PDT
Brandy it was my brothers best friend - they grew up together went to the same curch sunday school and had the same friends -
the boy/man is a wonderful person despite heavy teasing later in life by people that didnt understand his handicap - he is downs with mild retardation -
they used forcepts durring his birth with did damage to his brain somehow - but his will to survive is ever present even today - |  |
  |  |  | Miss Ginger September 16, 2005 05:50 PM PDT
Hi ya, sweetie! Things will all work out, I'm sure. I'll keep sending you every drop of positive thoughts that I have, ok? |  |
  |  |  | ssprite September 16, 2005 04:58 PM PDT
DONT GIVE UP!!! :)
remember many a child diagonsed the same as your lil tyke has done just fine and have had wonderful lives even if retarded -
case in point is a child my brother and i grew up with - he is now in his 40s and healthy as an ox on an indepandant living program - he walks all over town and everyone knows him quite well -
he was one of the best lil league catchers we ever had & on top of it still haunts baseball and football season at our local highschool -
have faith and give the lil tyke lots and lots of love and encouragement - thats what makes them grow into little flowers when the doctors told us all we only had a weed ;) - }}}HUGS{{{ |  |
  |  |  | raejane September 16, 2005 04:58 PM PDT
I wish I knew what to say.
My heart aches for you, but you know what? That little guy sure is loved!!
I know things are tough and I'll keep you in my thoughts and keep sending you lots of good energy.
It sounds trite to say "stay strong"... but please try.
Love ya! |  |
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