As of yesterday at 10:45 AM, I'm a member of a new club. Moms of babies with congenital heart defects. Heart babies. CHD. Honestly, I can't really work up the ole cheerleader excitement to wave a flag or rally for awareness or pin a certain color of ribbon to my body parts. I'm tired of all my new clubs.
I flitted in and out of the chromosome disorder mom's group because my chromosome baby . . . left us? I don't really know how to phrase that without seeming morbid or depressed or dramatic. You read this blog. You know what happened. One of the twins has been gone since week 19 of this pregnancy and it seems weird of me to lurk on message boards where parents of other kids with her condition discuss leg braces and feeding tubes.
I moved on. Mostly. I refocused my attention and efforts on the presumed healthy twin. Sometimes crap doesn't work out. Onward! Upward! (You know these are half lies, right? I just don't feel the need to drag other people through my muck. Truthfully, I'm down to crying maybe two times a week.)
As a mere formality in June, we were scheduled for an echocardiogram at 20 weeks for the remaining twin. Her name is Boss. Ole Bossy Shorts sailed through her obligatory exam and we all went home to ice cream. Awesome. We had a healthy baby on the way and really, what more can you ask for? La-dee-da! Her nursery is rad!
Yesterday was supposed to be our low-key send-off from the high risk fetal medicine department. We had just one more little look-see to confirm she was still perfect. Earlier that morning I met with a new midwife to confirm plans of a crunchy, granola, low-lit natural birth - as much of an effort to escape Dr. Strange as to ensure this birth is as much like my other ones where I sweat for 24+ hours but make it out scot-free as far as belly scars go. Hi, I'm vain.
Yup, just one more little peek with a super-quick (promise!) echocardiogram. I scheduled a hair cut for later in the day. We had plans to go to a party. Just an ole in-and-out drive-by of an exam, right?
I could tell the news was bad when the cardiologist stopped yammering about the fight between her nanny and her mother-in-law. She had been chummy and girlfriendy with me since she walked in the room and delivered a jarringly firm handshake, then started telling us about herself - a story which took a few turns and was going in the direction of some personality conflicts between her Sicilian mother-in-law and the paid caretaker who apparently didn't do laundry correctly. We were just getting to the part where the doctor's mom insisted on folding before sorting when the room got quiet.
You know how when a stranger is telling a boring story and you're pretending to care? I have a habit of saying "go on!" like a child curled up for a fascinating bed time tale. It's a nervous habit. I do it when I'm in a bad mood at cocktail parties so I don't have to take a turn speaking. There was a thud in my chest when the cardiologist stopped prattling and started studying the screen, furiously punching buttons and poking my globe-sized belly with her magic apparatus. I knew it was bad. I desperately wanted the boring laundry story to start back up, but instead of "go on!" I cut to the chase. Just tell us what you see.
"It appears there is a ventricle septal defect . . ."
" . . . and a leaking pulmonary valve."
Then she said, "meep beep blurghhhhhhh DEFECT burgh beep derp" for about 20 minutes and ended up drawing us a cartoon that wasn't funny at all. It was a picture of a human heart with wonky bits.
Ways to tell how bad your medical situation is:
- The doctor writes down the real phone number of how to get ahold of her on the back of her business card in order to avoid the secretary loop on the front.
- Medical personnel who were super chummy suddenly create distance by talking at you in clipped Big Words. Nobody likes delivering bad news and it's easier for the doctor to do with someone who doesn't know her literal dirty laundry.
- Your appointment takes three hours instead of 30 minutes
I went home, did the Google, cried the cry, got the haircut, went to the party. This baby's going to be okay. There are babies with worse who are more than okay! It's going to be OKAY. Even if it's not, I'll be okay. Well, if I lost another baby I'd go postal and rage into a wind for awhile, but eventually, someday, no matter what happens to me under any circumstances I will find a way to be okay. That is the challenge of life I will never give up on. I will be okay.
A package arrived in the mail during all of this. It was my senior yearbook. My friend Jessica from high school unearthed it at her parents' house where I must have left it the day I got it. I expected to see no trace of me in the pages and maybe a few notes about party times and wishes to have a good summer. I found something else. I found pages of encouragement from people who really know me.
"I'm really proud of you. You are a very mature person in your way of life. What has happened has made you strong [...] Also, I always told you you look like a movie star's wife. Always remember never to let anyone hold you down or anything to get in the way of your dreams." - Moe S. Class of '98
"Your creativity shines through in everything you do. Your column [in the school paper] gave good advice and always made me smile. I'll miss your honest, true words and your outrageous attitude." - Cynthia J.
"You a Barbie girl in a Barbie world. I'll always love you and think of you." - Kevin H.
"Even though you act wild and crazy (which is refreshing) you have an outlook on life that is intelligent and very insightful. You show wisdom beyond your years, girl! I wish you luck in everything you do, but with your creative ideas and talents you'll have no problems!" - Jasmine W.
Well, I can't say I didn't have any problems or enjoyed raging success, but I'm okay and that's a damn accomplishment.
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Filed under: CHD mama