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Monday, September 29, 2008

The Heart of an Angel

Today, Nina had her appointment with the cardiologist after her initial appointment had to be rescheduled due to lightning striking the hospital the night before!

As many of you know, when Nina was referred to us we were informed that she had a congenital heart condition called a VSD. VSD stands for Ventricular Septal Defect and it's basically a hole in the heart between the wall, or septum, that separates the two ventricles (which are the two lower chambers of your heart). You can have a muscular or a membranous defect, and we knew Nina's is muscular which, if you're going to have one, is the one to have.

We were relatively confident based on ultrasound images and other diagnostic information from Ethiopia that the hole was small and would likely close over time. We also knew that if she had a serious defect, she wouldn't be thriving. And, for the record, a VSD is not uncommon even in this country. But, we still needed to consult with the pediatric cardiologist here to get a full assessment and path forward. Because, lest we've forgotten, the wise 12-year-old working at the U.S. Embassy in Ethiopia informed me that "medical care is better in the U.S. than it is in Ethiopia."

Shocking.

After I filled out pages and pages of paperwork on which I had to continually note "Not Known" next to umpteen questions about her family history (can you say "insert knife and twist?"), the door opened and I watched a sweet young tech as she mindfully wrestled with her options.

You see, when you have an uncommon name, teachers and medical personnel alike tend to pay the price.

"Rah...Ray...Rah...Lyons?"

Very close. Good save.

We spent 30 minutes attempting to get an EKG, blood pressure, pulse ox etc. on this child. This very squirmy, unnaturally happy child who thought I'd taken her to an amusement park for the day. Honestly. She was chewing on all the leads, the blood pressure cuff, you name it. And, if you move during an EKG, it's over. It was over about 38 times before we got anything close to acceptable.

Then it was time for the ultrasound. While on the exam table, Nina began wondering what she could next chew to smithereens, and the tech began doing the scan. The tech also began venting about Sarah Palin.

Honestly, there must be a lesson for me in here somewhere. I'm too tired to find it. But what I can tell you is that I am SO SICK of hearing about Sarah Palin, one way or the other.

So there I was, intently watching the screen as the tech droned on and on. I caught only every 6th word or so, but I unfortunately caught enough to know that her monologue had something to do with Planned Parenthood, an e-mail campaign, and the acquisition of MY email address, which was not going to be forthcoming.

Anyhoo, about 7 minutes in (was it only 7? Because it felt like 107), I interrupted her diatribe by saying, "Excuse me, I'm sorry to interrupt, but what exactly are we looking at here?"

I realize she must have been shocked to learn that I actually was more interested in the state of my daughter's heart than her thoughts on whether Sarah's poor 17-year-old daughter should be forced to marry "a thug" simply because she is carrying his child.

"These are the ventricles," she explained as she pointed them out on the screen.

"...and can you even beLIEVE that people do not like Michelle Obama?" she continued. "Because..."

"No I can't believe it. Now, I'm no expert [insert tech's name], and I'm sorry to again interrupt, but are those TWO flows from her left to her right ventricle?"

"Yes. I think so. But don't tell the doctors I told you. I'm not supposed to do that. But she seems to have two VSDs. Now, did you see the way that McCain did not even LOOK at Obama during the debate, because..."

"I'm sorry. Excuse me again. Did you just say she has TWO VSDs?"

"Well, I think so, but again, I'm not a doctor and..."

At this point, I completely tuned her out. Didn't catch even every 6th word. I determined that, over the course of the next 21 minutes, I was going to become an expert on the heart as seen on ultrasound. Poor woman didn't have a chance. Didn't have the opportunity to provide another opinion on anything, political or otherwise, because she was suddenly bombarded by little old me with questions like, "Is that blood supposed to be flowing from her ventrical to her atrium? Because I think it is. Oh, that's normal? Okay.

"Why is the wand now in her neck? Are you looking at her carotid artery? Yes? Is it normal? Oh good.

"What's the systolic gradient of the VSDs? How do I know about that? Oh, honey, I don't know if you've met my very best friend but his name is Google.

"What? No one else on earth listens to you vent? Clearly. Save it for the next patient. Now..."

Anyway, the verdict was that she likely has two VSDs. Very small ones, though, and they should not affect her in any way short- or long-term. She'll get some follow-up visits and ultrasounds with the hope that we'll confirm that the holes have closed, which will hopefully happen by her 4th birthday.

She's clearly not suffering from any major heart condition, as she weighed in at 17 POUNDS and 27 INCHES. This means that she's grown 8 inches in 5 months and has put on 7 pounds since coming home two months ago! Yeesh.

She also continues to be an angel. Every time they did something, they'd say, "She probably won't like this," and I continued to respond, "You haven't treated a kid like this yet. Trust me." She smiled at everyone, never cried, and even after going 6 hours without a nap finally sank into her stroller, closed her eyes, and went to sleep as I talked to the nurse. We never even noticed!

I shudder at the very thought that David and I ever looked at one another with raised eyebrows, slowly and sadly shaking our heads in silence, as our case manager explained that she had a beautiful baby to tell us about but that we had to be very cautious because she had a heart condition.

We were shaking our heads because we heard "heart condition" and envisioned months living at the hospital while corrective measures were undertaken. With 4 other kids at home. And no family living nearby. Am I crazy? Yes. Am I clinically insane beyond measure? No. Not yet.

To be perfectly clear, a special need doesn't faze me in the least. But with 4 other kids at home, I could not manage the idea of living in a hospital with a baby for an unknown period of time. You deal with things that come up of which you were unaware in advance, but to know about something challenging in advance and take it on requires, for me, a different family dynamic than we have at this time.

Even with what limited information we had, David and I never considered turning down Nina's referral. The doctor's assessments gave us great comfort, but the specialists all insisted on speaking "off the record" and we didn't know what we'd learn once we got her home. We were a bit nervous as I prepared to leave for Ethiopia because, at 13 weeks of age, she still weighed under 10 pounds, had been hospitalized once with pneumonia and, not having laid eyes on her, we weren't 100% comfortable that all was copacetic.

The very idea that we could have been frightened enough of the possibilities not to accept her referral is something I cannot even think about. I simply cannot imagine not having this kid in our world. I mean, really, just LOOK at her!

To entice you to come back next time, I've found THE answer to be used when people ask what happened to your child's birth parents (and you don't want to answer). Stay tuned!

7 comments:

Dawn said...

She is such a peanut - too cute! I can't believe that woman today - sheesh. As always...looking forward to the next post!
~Dawn

JonesEthiopia said...

Love this post. Nina is a living doll, and she is just as lucky to have you as her mom as you are to have her for a daughter. Isn't adoption just about the most amazing thing in the whole world?

Trendy Mindy said...

OMG Liz - I have been dying for a NINA pic!! Thank you!!!

PS - Have I told you what an excellent writer you are? Keep it coming...keep it coming! m

SBreemes said...

I am so thankful things went well today for you and Nina, besides dealing with the annoying tech. I will be praying for the health of Nina's heart - and your heart - because I know you just want the best treatment for her.

You guys are wonderful parents! Nina is just gorgeous (love the new pic you posted)!!!
I hope we can meet her in person one day.

p.s. I haven't checked your blog in a while so I hope we can help donate on Mission #2! Congrats on the donations for Etagenge - how awesome!

Kerri said...

Glad the appointment went well - okay, minus the rambling ultrasound tech.
Kerri, Medina, and Ruby

Our journey said...

Thanks for your always great posts. I truly appreciate your authenticity. I have never commented : ), but wanted to tell you how wonderful your Believe Impossible Things campaign is. Great to be out inspiring others with what you are doing and in such a tangible way for them. I hope you have continued success on your next endeavor.

Amy

Aimee said...

You crack me up! Bet you didn't know we have a best friend in common...isn't Google great! Aimee :)