March 16, 2013

Meili's heart

Remember I said we'd had a few crazy days since arriving home? The first one was Monday. We had intended for this week to be a "catch-up" week; laying low so we could get back on a normal schedule, planning to start the various doctors appointments next week. But at 8:30 on Monday morning we got a call from our pediatric cardiologist, insisting that we bring Meili in for an 11:00am appointment that morning.

I will admit I was a little caught off guard. We were still very tired, and we hadn't yet tried the car seat with Meili. Car seats are an issue for LOTS of adopted kids because they're so confining and they've NEVER been in one - they don't use them in China. But our doctor has seen lots of cases where adoption paperwork says one thing, but the reality is another and he didn't want to take any chances with her heart. I can appreciate this. And even though we had yet to meet him, he had been a wonderful help to us and I respected his opinion.

Poor Jon had to console me when I called...I wasn't quite ready to deal with a doctors appointment by myself so even though he had JUST arrived at work after almost three weeks off, he took another half-day of vacation and came home. We fed Meili a quick breakfast and headed to "the castle."


Now, I have had only a handful of experiences with this particular healthcare institution and two of them had NOT been good. But when it comes to our experience with the pediatric cardiology crew, it's a different story! When we initially started researching the various special needs we needed to know what was available for care in our area. So I made many phone calls to many different departments looking for answers and trying to find people who could review our referral file when we got it.

Almost no one would talk to me. They gave me the runaround, said I couldn't ask any questions without having a specific patient name, etc. etc. But when I called ped. cardiology, I got the most amazing woman! She answered EVERY question and talked to me for over half an hour. She told me the doctor she worked for was a Christian and had reviewed other adoption files as well. She gave me her email and checked up on me periodically. AND she put me in touch with people from ALL the other departments I'd been trying to reach. I didn't need them though - after talking to her somehow I knew we'd get referred a heart child.

And whattya know, we did. Miss Meili has a heart defect. I haven't said a lot about it because we wanted to get home and have her examined here to make sure we knew 100% what we were dealing with. I've heard too many stories of people coming home from China with children that they think need a routine procedure only to find out they have serious, serious heart issues.

She was a little apprehensive heading into the building - she is generally like this at new places.


This lasted roughly 60 seconds.


 Then she went into her typical all-out "charm" mode and attempted to get everyone wrapped around her little finger.


She was fairly successful.


It didn't hurt that everyone there is so great with kids. I suppose that's a pre-requisite to work at a Children's clinic!

We weren't quite sure what this appointment was going to entail so didn't really have an idea of what to expect. The doctor wanted to do everything. I was a little surprised...I guess I expected a simple check-up and then we'd have to reschedule for all the tests. It really worked out so much better this way though, now we've got it done and have one less thing to worry about.

First we did an EKG.



Then checked oxygen levels which were at 95% - excellent.



Blood pressure - great.


Then we did the echocardiogram. Basically an ultrasound of her heart. This took some time. She behaved like a champ and as long as she had her little cup of "shrimpies" we had no problems.



And lastly, weight and height, which we only did last because we were too busy chatting right away at the beginning. She's such a tiny little thing; weighing in at only 20.0 pounds. I'm including this picture just so ya'll can see how tiny she is and remember to pray for her to gain weight and start growing. We're trying our best to get her some nutrients and praying she'll start making some serious progress.


We consulted with her doctor after everything was done and the news was very good. It appears the information in her referral paperwork was accurate.

Meili's defect is called Tetralogy of Fallot. It is a combination of four different defects that always requires open-heart surgery to correct. It used to be referred to as "blue baby syndrome" because the children who had it often had a blue appearance since a hole in the wall between the ventricles (VSD - ventricular septal defect) caused the oxygenated blood to mix with non-oxygenated blood resulting in poorly oxygenated blood being delivered to the body.

For those of you who are medically inclined, here's a diagram:

(source)
We were prepared (and expecting) to be referred a child who still needed the surgery, so we were surprised when her file indicated her repair had already been done in China when she was 5 months old. As long as the repair was done well, this was a very good thing because the longer a child goes without repair the more risk there is of pulmonary hypertension. I had meant to ask how she managed to get surgery considering how poor her orphanage is. I wondered if one of the many non-profit agencies that work in China was involved? I guess we'll never know.

Anyway, the good news is that Meili's repair appears to have been done well. Her doctor also called her case a "minor tetralogy." TOF can range in it's severity and apparently hers was a more "cut and dry" case. We will monitor her heart every six months since issues can arise with the pulmonary valve. This valve leaks and causes a slight murmur and will likely need to be replaced when she's older (this is an expected outcome after repair) but as long as it keeps doing it's job properly, we shouldn't have to worry about that until she's close to her 20's.

Next week will bring more doctors appointments to analyze the rest of her health, which causes me much more concern than her heart did. Please pray that we'll get good news and be able to get connected to the right people to advise us on how to help her grow and develop properly. She has some catching up to do!

And if you're interested, there's a really great movie about the doctors who pioneered open heart surgery - they did it to help babies with Tetrology of Fallot. The very first open heart surgeries were done on TOF kids. It's called "Something the Lord Made." Find it HERE or on Netflix.

3 comments:

  1. I'll be praying for the upcoming appointments. Happy to hear that this one went well. :D

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  2. Oh my goodness, you got the cutest girl in all of CHINA! :)

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  3. Meili is adorable!!! Those precious facial expressions!! I LOVED that movie, too!!! God bless you as you enjoy your new addition and family life!!

    Lisa Murphy
    www.everythingmadi.blogspot.com

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