Thursday, March 30, 2006

Advanced Maternal Age

When my doctor told me that he wanted to test my new baby for Down syndrome, my head started ringing, time stood still and I tried to remember to breathe.

Aaron would have his blood drawn and analyzed. The results would return in an excruciating two weeks. I looked at the lab requisition. My doctor had written in big letters: ADVANCED MATERNAL AGE.

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Maternal. Oh. That's me. Advanced? Ouch. Well, I was 35 when Aaron was born but only 34 when he was conceived.

My myth-filled mind started to rationalize the situation. Only women over 35 had children with Down syndrome. Right? Right? Please, somebody tell me that's right.

(Actually, that's wrong. Now that I’m an expert on all things Down syndrome, I know that the 80% of babies with Down syndrome are born to women under the age of 35. This statistic busts open the myth that only "older" moms have babies with Down syndrome because of this interesting twist: more women under the age of 35 are having more babies than "older" women. Hence there are more ‘young’ moms than ‘old’ moms).

But in my reeling mind in my doctor's office, this "Advanced Maternal Age" business was starting to piss me off. My grief process kicked in. Denial: I wasn't over 35 when my baby was conceived; therefore my baby cannot have Down syndrome. Anger: How dare my physician call my age "advanced"! What does he know?

I’m a young chickie! I'm my husband’s young trophy wife! I haven't found any white hairs in my head yet! I like "Green Day" music! My doctor has clearly lost his mind.

Fast forward three years. My baby, who does indeed have Down syndrome, celebrated his birthday today. Yesterday he had a playdate with a friend with Down syndrome – and his mom was only 21 when her baby was born.

Even if my chronological age creeps up with each passing year, Aaron keeps me young. He's forced me to be a whip-smart advocate, fierce myth buster, and nimble cheerleader who applauds wildly for every single baby step.

Happy birthday, my dear Aaron. Your old mom (and even more ancient dad) love you very much.

Wednesday, March 29, 2006

spring cleaning

If anyone would like me to change their contributor name (or if I have overlooked anyone's name), please drop me a line (moreenaATgmailDOTcom) to let me know. Also, if you have other blogs you would like me to include in the links section, let me know. Mainly I just want to be sure I've kept up with everyone, and that everyone's information is current. Thanks!

Starting Over... Again

Its funny how when things are going good for our children, we forget how sick they really are. Or do we just ignore it and live in the bliss of their current health? I am not sure, but I know that this last few months has given me a reality check on that topic.

Emma Grace spent all of January in ICU. We had 4 years of almost normalicy regarding her transplanted heart. Her function had been normal, her biopsies never showed rejection, until December 31, 2005.

Over christmas we had noticed changes in Emma. We noticed her heart rate was rising, her activity had somewhat lessoned, but most of all her weight had increased significantly. The positive mother in me needed to believe that she was just gaining weight like a champ, and that I should be grateful for her chubby appearance. The skeptical mother in me couldnt deny that this was a big change for my very very thin little girl.

We cut our trip short to my parents and headed home on December 31st. Our lives changed drastically that day... again.
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Once we arrived home, Emma's heart rate was 165. Her respiratory rate was in the 60's. We went directly to the ER. At the hospital, they informed us that Emmas heart function was "significantly compromised". They did a chest x-ray and found that her left lung had partially collapsed and she had pneumonia. She had no cough, no conjestion, no signs of pneumonia, which had always been present with every other episode. Her heart, stomach, liver and lungs all had fluid build up. Long and short, our angel was, once again, in heart failure.

We were stunned. We had arleady done this once before, we knew her odds, and again we started bargaining with God.

We spent the next month in the transplant hospital over an hour from our home, my mother in law moved into our home to take care of our 2 other children, we rented an apartment by the hospital and settled in for the unknown.

Emma was diagnosed with Transplant Related Coronary Artery Disease, and was re evaluated for another transplant. She laid still in a big girl hospital bed for almost a month (did I mention she was discharged for a breif time, turned blue and had to be life flighted back to the hospital? I never want to experience that again)

We have decided to try to get as much out of her current heart, using medications, before attempting another transplant. She is now in rehab 3 days a week to build back her strength so she can sustain another transplant surgery.

Thru all of this, I have experienced anger, depression, sadness, pity, anger and more anger. I have learned how strong I truly am NOT. I have watched my little girl fight for her life, again. I have fought with doctors, family, my husband, myself. I have crossed lines and mended relationships, but most of all I have been reminded of how fragile my daughters life is.

I have learned to yell at God when I feel I have no one to yell at.

Cherish your moments. Cherish your children. Do not ever become complacent or secure in their health. Marvel at their success and weep in their shortcomings.

Most of all, be real in your pain.