Tag Archives: testing

CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!



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19 Week Ultrasound

Yesterday was my big ultrasound. I was a little bit apprehensive about it, as there are some birth defects that run in my family, but everything was great! The baby is average in length and weight, so hopefully s/he stays that way! I don’t think anyone could blame me for not wanting to push out a baby that’s 2 ft long and over 9 lbs, like I was (thanks Mom!).

As for the pulmo appt. today, it was good and bad. The doctor wanted to hold off on the inhalers b/c he’s not sure what’s wrong, after all. So, I’ve got to go in for more testing 😦 It’s pretty frustrating because I just want to be better already! I’m crossing my fingers that I’ll be able to handle the walking on Monday alright. I was sure I’d have medication in time, but now I’m going to have to go at it alone and just see how it goes.


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Big ultrasound tomorrow!

(and no, we’re still not planning on finding out the sex!)

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My next adventure

OK, so this marks my third adventure. First I’ve been working on cross-stitching, though it’s coming along very slowly (I actually started this bib in January with the intention of giving it to someone else but now it will be for our baby…). Second was making the jam/canning. Third? Exercise!

Now, before you scoff, hear me out. Having Marfan syndrome does make exercise more difficult. I used to be on the high school swim team (well, in a modified version of course), and walk a few miles a day just getting around Case’s campus. But, my breathing problems associated with the disorder have gotten progressively worse, making it too difficult to do many things. Now, with a pulmanology appointment on Friday, I am optimistic for the first time in a long time. I think that with an inhaler and breathing PT I will be able to do some of the basic things I’d taken for granted, like stand up to fold laundry at the laundromat. I am really, really feeling good about this 🙂

So, I decided to get back into walking for as long as I’m able. I found a willing partner in Sarah M. from church. Starting Monday we’ll meet at 8 AM walk for 30-60 minutes a few times a week. This is probably a little ambitious, but that’s the whole point of a goal right? To push yourself? Tonight I went out and bought walking pants that actually are LONG enough (who knew Target had long exercise pants?) and seem to accommodate my growing belly. Now all of you can help hold me accountable to my goal. I’m not trying to lose weight, but I know exercise is important for a healthy pregnancy and I think I’ll just feel better in general being able to do more.

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A Mailman? Really?

In life, you just have to be able to poke fun at yourself. Today is one of those days for sure!

Being a high-risk cardiac pregnancy, my doctors are understandably keeping a close eye on my health and on the baby. I’ve been having some breathing troubles for about a year but they were ignored for awhile, until I was a couple months pregnant and my hormones made me less than patient about not being taken seriously. :-p So, a couple of weeks ago I got a heart monitor. Now, other than when I wear a dress on Sundays, this is not so bad. The wires are mostly hidden under my shirt, and the monitor is small enough to look like a pager.

On dress days I have to wear the monitor as a necklace around my neck because I don’t have a waistband on which to clip the pager. I’ll admit this looks rather odd. It certainly caught the attention of the 8 and 9 year olds I teach in Primary (children’s Sunday school). Luckily, the girls more or less decided it was ugly enough to be cool. Whew! It’s important to keep that “cool factor,” lol.

However, the heart monitor only checks my rate and looks for palpitations. I also needed a blood pressure monitor. It took about 6 weeks, but I finally got it today. Let me tell you: you haven’t seen ugly until you’ve seen this machine, OK?

First of all, the cuff is, of course, large. It’s also robin’s egg blue. I got a tan “fake belt” to hang the machine itself on. The machine weighs about 5 pounds and is encased in a matching (thank goodness for small blessings lol!) robin’s egg blue pouch. Even those wouldn’t be so bad, except the hospital doesn’t have different sizes of tubing, apparently. I have this black tube going from the pouch, across my shoulder, down my back and onto the cuff that could probably fit Dave, and he is (no joke) featured on the TLC show “World’s Tallest People” because I think he’s closer to 8″ than 7″.

This whole contraption is kind of like a pageant sash for sick people.

Anyway, I had to wear this with me to the OB office. Not too terrible; apparently that floor is mostly for patients with high-risk pregnancies so they might be a little more used to weirdness. However, nurses in other departments apparently are not.

I was in the elevator just after having some bloodwork done when I noticed a nurse staring at me. “Do you have to wear that ALL the time?” she asked. “All the time till tomorrow morning,” I replied with a smile. “BLESS YOU!” she said as I exited the elevator. If I had stayed, this is how she would have finished the sentence: “BLESS YOU for having to wear something so incredibly ugly it makes me want to cry just looking at you!” True story.

The BEST part of the day so far was when I got back home. I stopped to get my mail on my way up to my apartment, when my neighbor from ACROSS THE HALL called out to me. I thought she was saying hello, but she was asking if I could hold her mail instead of putting it in her box. She looked really embarrassed when she realized I wasn’t the mail woman.

I think, if this get-up was red, I’d make a much more believable fire woman than a postal worker!


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