Friday, February 26, 2016

Day 26 - Evie Joy

Our sweet girl has a thing for holidays.

For the last few months of 2014, my husband and I talked and prayed about the right time to begin the adoption process for Baby #4.  We included our kids in this discussion, and they were not slow to get on board.  (Li'l Miss had been asking for a sister pretty much since we got off the plane from China in 2012.  Li'l Man kept announcing that he wanted five boys and five girls, while proudly holding up both hands full of fingers. Li'l Dude...well...we were counting on him getting used to the idea.)  As a family, we decided to move forward at the beginning of 2015.
Then we got a little Christmas surprise.

On Christmas Eve, our agency posted the files of several newly assigned waiting children.  When we woke up on Christmas morning, even more little ones had been listed.  One of those sweeties seemed like a good fit for our family.  (Actually, most of them did, but someone had already informed me that I was cut off at one this time around.) We asked to see this little one's file and received it right away. Here’s the little face that arrived in our inbox.

We read through this sweet girl’s file and tried to take it all in. Her diagnosis was unrepaired Tetralogy of Fallot (TOF). We knew a little bit about heart defects from our adoption in 2012, but we were not experts by any means. Even though the thought of a heart baby was not something we had seriously considered, we had room in our hearts and our home for another little one; and it was very evident that this little one needed to come home.

A few days after we requested to review the file, we got a short video to accompany it. In the video, the sweet girl was screaming. You could see how blue she was, and, if you looked closely, you could also see the clubbing of her fingers. The first time I watched it, I just knew this baby was ours.  I remember I was walking into Target and clicked on the link right away.  It seems strange to see a little one screaming her head off and think, She's my baby; but that's exactly what I did.

Fast forward a few months to another holiday. Although we started our adoption from scratch at the beginning of January, we were able to expedite our process because our girl (who we had named Evie Joy) needed to get home. So, amazingly, we found ourselves standing in the Shaanxi County Civil Affairs Office on the afternoon of Mothers’ Day, waiting to be handed the best Mothers’ Day gift ever.

There she was: our sweaty, blue, beautiful baby girl. While Evie came from an orphanage that seemed to be incredibly nurturing, she was not receiving any cardiac care in China: no surgeries, no medications, nothing. It was scary to see her blue lips and fingertips and to watch her struggle to breathe – even when she was just sitting at the breakfast table.

The baby girl we met on Mothers’ Day was sick and quiet and scared to death. She didn’t make a sound for five days. We didn’t hear her cry or laugh or fuss. She could walk, but she was super wobbly and tired very quickly.

Our cardiologist had scheduled Evie for an appointment the morning after we arrived home from China. Through the tests Evie had that day and in the coming weeks, we learned that her diagnosis of TOF was correct. She also had stenosis of the left pulmonary artery (which is present in about 40% of people with TOF), a PDA that needed to be closed, and a PFO. 

Evie was scheduled for surgery about five weeks after we arrived home. In the weeks before her surgery, we worked hard on bonding. We spent lots of time cocooning as a family. We even squeezed in time for family pictures.

On June 30, 2015 Evie had her open heart surgery. The surgeon was able to repair everything he had hoped. He patched her VSD (big hole in the bottom of her heart) and closed her PDA (extra duct coming off of her aorta). The opening to her left pulmonary artery was very small, so he used a patch to widen that. (The patch is actually a piece of the sac that surrounds her heart. How amazing is that?) He also opened up her pulmonary valve and placed an artificial flap. Her valve was very, very tiny - like the diameter of half of the top of your pinky.

After surgery, Bean's body was really struggling. When we finally got to see her in the CVICU (Cardiovascular Intensive Care Unit), the first thing the doctor said to us was, "She is very sick". Her lungs were filled with a lot of blood and fluid, and her oxygen saturation levels were low. The doctors had sedated and paralyzed her with medication, and a ventilator was breathing for her.

I don't even have words to explain how hard it is to kiss your child goodbye in the morning when she looks like this...

…and see her next looking like this.

Most of Evie’s struggles were due to the fact that her surgery was a year and a half overdue. Her body had two years to learn to function with a broken heart; after surgery it had to learn all over again.

And our girl likes to make holidays memorable.

Evie made progress after the surgery and was extubated just two days later. Unfortunately, her progress stopped and she started getting sicker. She was restricted to a clear liquid diet, but she still threw up everything she ate. Her body started retaining fluid, and she get more and more lethargic.

Then came the 4th of July. That day she had an EEG, a head CT, breathing treatments, and an Echo. As the day wore on, she kept sliding further and further into lethargy and oxygen desaturation. Her body got puffier and puffier and her liver started struggling. Finally, she had to be sedated and paralyzed and put back on the vent.

It was honestly the most terrifying night of my life. When they had finished the intubation, I stood at the foot of her bed and just cried. Even though she was sedated, Evie had tears running down her cheeks. Blood and fluid bubbled out of her little nose. I wanted more than anything to pick my girl up and run and run and run until we miraculously ended up back at normal.

Thankfully July doesn’t have any more holidays. ;)

Evie stayed on the vent for three more days and then was extubated again. This time you could just tell she felt better. After eleven days in the CVICU, we moved to the step-down unit. Three days later, we said goodbye to the hospital.

Today our little girl is pink and spunky and full of mischief. She giggles and chases her siblings and is mostly fearless. For now, she’s off all meds and has no restrictions. Her pulmonary valve couldn’t be saved, but her synthetic valve is doing a great job. One day, she’ll have open heart surgery again to replace that valve, but this Valentine’s Day she was just a two year old with a little line of bravery down the center of her chest.


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