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Featured CHD Kid
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Thursday, 21 May 2009 14:45 |
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Sofia Born April 2007 Atrioventricular Septal Defect (ASVD)/AV canal Surgery @ 5 months @ Phoenix Children's Hospital 
Our daughter’s journey of courage began with her very first echocardiogram when I was 20 weeks pregnant. We had just found out that her tiny  heart had a huge hole and was missing a valve. We were terrified. She was born two weeks early on April 15, 2007 weighing only 5 pounds 6 ounces. The cardiologist said her heart looked very strong though and there was no need to worry about the possibility of heart failure for at least three or four months. We remained in the NICU, however, until she was able to suck and eat on her own. Two weeks later, we were finally able to take her home and help her get strong enough for her scheduled surgery at five months of age.
Just two days after we got her home, she went into heart failure. We returned to the hospital for another three weeks and watched as she lost weight while the doctors tried to stabilize her tiny heart and deal with various complications brought on by heart failure.
Because her heart required all of her energy to keep it pumping, she didn’t even have the strength to eat, so when she was just four weeks old and weighed less than six pounds, she was operated on and had a feeding tube put directly into her stomach through her belly. Once they found the right combination of heart medications to ensure her heart was stable, and she could tolerate food being directly pumped into her stomach through the g-tube, we were finally able to take our sweet baby home again. By now she was almost six weeks old, but had spent only two days of her life at home.
 The following four months we struggled to keep her healthy and help her gain the weight and strength she desperately needed to endure her open-heart surgery. Those months were filled with weekly doctor appointments, blood tests, echocardiograms, sleepless nights, and many tears. Unfortunately, she stopped gaining weight when she reached nine pounds. The doctors had wanted her to weigh thirteen pounds before they operated, but she was five months old and could not wait any longer. She was four pounds short of her goal when the date of surgery arrived in September.
We thought we were prepared for her surgery with all the research we had done and by talking with other parents who had already reached the other side of what we were just beginning to embark upon, but nothing can really prepare you for seeing your tiny baby lay in the pediatric intensive care unit after major open-heart surgery. She was recovering quite well after surgery and came off the ventilator that very same day, in fact, the doctors said she was recovering faster and better than most babies, but everything changed very quickly. Sofia went into heart failure just two days before we were supposed to take her home. Our daughter’s heart had torn apart, the stitches did not hold. As her heart split open again, so did mine. I was terrified that neither one of us would recover.
Sofia, our amazing daughter however, gathered the strength to pull through. This tiny baby had been cut open twice, was bruised and battered, a machine was breathing for her and pacing her heart, she had more tubes and wires and IVs in her than you would think such a small baby could endure, but she eventually healed. It seemed she was the strongest of us all. She was the one who carried us through those dark days and eventually into the light again. It was her joyful smile, just a few days after her second surgery, that let the sun shine into our lives again.
During the month we spent at Phoenix Childrens Hospital, a program was started for children called Beads of Courage. It allows children to tell their medical story using colorful beads as symbols of courage, each bead representing a specific treatment. For example, each one of the “rainbow” beads you see on Sofia’s necklace represents 10 nights in the hospital and the red “heart” bead represents one of her heart surgeries. Other beads represent each x-ray, blood draw, doctor visit, therapy session, IV, times on bypass machine, blood transfusion, etc. Sofia now has more than 500 beads.
When I saw all of the beads that Sofia had earned, beginning with that very first echocardiogram before she was even born, I saw her journey in a whole new way. For having only been on this earth 5 short months, these beads told the story of an incredibly long journey she had already traveled. When she is older, she will be able to show them with pride and they will allow her to better understand the strength deep within herself and the power of the incredible journey she traveled at such a young age.
Unfortunately, the second operation did not completely repair her heart, but the cardiologists are hopeful that she can wait until she is 10 years old  before having to operate again and repair or replace her mitral valve. Even though she still has a major heart defect, Sofia is a completely different baby now than before her surgeries. She is catching up with her development at an amazing rate, she is gaining weight quickly, and is slowly learning to eat again. From the outside, she is just another typical baby… talking, smiling and laughing all the time, and bringing joy and love to everyone along the way. (Feb 2008 - 10 months old)
(An update as of May 2009 - Sofia just turned 2 years old and her heart has begun to enlarge due to the massive blood flow from the severe leak in her mitral valve. She will be headed for another open-heart surgery sooner than we had hoped. This time they will replace her mitral valve, but she will need at least one more surgery in the future when she outgrows this mitral valve. We are hoping she can wait at least a year before she returns to surgery, but they say she definitely will not make it to age 5 without the surgery. It all depends on the rate her heart continues to enlarge. You certainly would not know it to look at her... she is full of energy, running around, climbing on everything, and laughing like crazy as she gets into all kinds of toddler trouble.) 
To see Sofia's website, click here.
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We'd like to thank our sponsors: Walmart Neighborhood Market @ Grant & Alvernon 
Dr. Michael LaCorte Pediatric Denistry 
Quilter's Desert Patch Grants from: Lucille E. Williams Foundation
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