When were reviewing Laila's file...( Well let me back up) We had requested it after seeing someone advocate for her on a China adoption website. We were not really sure about heart conditions at all, but we thought there was “something” about her! The agency replied to my request for Laila’s file to let me know another family had already been given her file. Still for a week or so we wondered about this girl named “Kathy”. The family who had her file was not able to proceed with her adoption and then her file was sent to us. We weren't expecting to see her file and all of a sudden here it was. The agency coordinator left everything in our court- it was our decision to make. I won't lie it was scary and overwhelming and within 5 minutes of reading words I could not pronounce much less understand my mind was already thinking "well maybe its too much for us". I kept telling myself ‘we are just regular people and we do not know much about heart conditions and surgeries’. I printed out the file and went to work. I taught dance and between classes I would look over the file. Another word. Another condition I could not understand. This is what I was reading:
Heterotaxy syndrome Right Atrial Isomerism
with asplenia, a
horizontal liver, atrial situs ambiguous, single atrium, single right
ventricle with a small residual left ventricle, complete
atrioventricular canal defect, moderate atrioventricular valve
regurgitation, double outlet right ventricle with a rightward anterior
aorta and valvar and subvalvar pulmonary stenosis. There were functional
bilateral Glenn anastomoses involving bilateral superior vena cavae.
What? I had no idea. I was the type of mom who struggled to remember to give my daughter her full round of antibiotics. Round the clock medicines were not something I could imagine. The most we ever faced as parents was a set of stitches and maybe a bout with bronchitis! Jarrod and I were both overwhelmed with the complicated heart defect terminology. We just felt, maybe we were not educated enough about it all and probably we would not move forward.. After Jarrod went to sleep, I spent the night googling heterotaxy, fenestrated fontan procedure, and other things in her file. Googling medical conditions can make even the most rational person want to run away..we almost did... But then I came across this video...
I saw the sweet little girl in the video at 3 minutes 30 seconds and I knew she was OURS. God wanted to bless us with this child and no way I am turning down his blessing. Just like the song by Steven Curtis Chapman says:
"I saw the face of Jesus in a little orphan girl. She was standing in a corner on the other side of the world...what now? what will you do now that you found me???"
The we took a leap of FAITH!
When I got to China I saw the reality and the toll this condition had taken on her 6.5 year old body. She was in heart failure and had been for years. I had never seen clubbed fingers. I did not even know that could happen. Her fingers were so purple and clubbed so bad. She was so beautiful though. She smiled and was so brave. They left her with me and handed me 2 boxes of medicines and an oxygen tank that looked like it had seen much better days. Here I was facing something I could have never prepared for! My head was spinning with how to dose these medicines. What about the oxygen? Then trying to not freak outwardly and scare Laila. At that point I wanted to take her a run to the airport and go straight to Texas Childrens, but we had 2 weeks in China to go!!!
We made it through China and we made it home! Then it was time to start the part we knew we had to do. Heart repair!! Laila had a cath study to determine her pressures and get ready for the Fontan. She needed the Fontan to save her life. After the cath we got some very devastating news. Her pressures were really too high to consider her a candidate for the surgery. We.were.devastated. WHY? How could we watch her get sicker? We did not know what to say or what to think. She wanted her “heart fixed” and she was asking when it would be. How could we tell her it was not going to happen?? That was the lowest point for us. We knew a simple cold could have turned into something life threatening for her. She does not have a spleen. Sickness would be our biggest fear! I wanted to put her in a bubble right then!! Well lo and behold God had other plans! She was determined to be operable! It was risky, but we knew were are at a top hospital and she was in good hands!
She had her surgery on Dec 29, 2010. Little did we know in less than 2 months she would have her first day of school on Feb 22, 2011! Wow what a difference in her coloring. She was like a different child.
It has been 2 years and almost 2 months since her surgery. Watching her grow and thrive has been an absolute blessing. Laila lives life to the fullest. She goes to full day school, takes ballet class, and even played softball last year! To think if she was still in China... She would have never had this surgery. Someone (Jewel Floch from Agape) told me in a facebook post.... “Laila came here for heart surgery...It seems as if you guys are the one who had the heart surgery!”... YES that is so true. We are changed. Thank God. And as far as all the crazy medical terms and how I thought we would not be able to do it... Let me tell you that we did fine! The medicine schedule, the appointments, hospital stays, calling refills in, picking up meds, getting “stern” with insurance, and dosing meds.. It just fits in with what we do. It is really no big deal! You have no idea how strong you are and what you are capable of especially when you are being lifted with prayers for your child! I love the saying God doesn’t call the equipped, he equips the called! I am thankful in a way to be a “heart” mom. I feel like we have had a “glimpse” of the big picture. Life is a gift.