November 24, 2008 Family Stories, heart defect, Tetralogy of Fallot 0 Comments

By Kim Kenward, mother to Josie from a China with a Congenital Heart Defect ~ Tetralogy of Fallot

Our Journey to Josephine Xue Kenward

When we first started out in the adoption process, we didn’t start out pursuing a special needs adoption. On July 31, 2007, we found our daughter on a waiting child list with a different agency than the one we were currently involved with. We had been logged in with our agency and the CCAA for over a year and I was tired of waiting for my daughter. After years of fertility issues and the disappointment of not being matched with waiting children with our current agency, I was ready to go elsewhere. The new adoption agency agreed that they would work with us, but there was a family currently interested in this child. We were second in line. If the family decided against her, we would have the opportunity to put our letter of intention in motion. I said a few prayers and started researching her heart condition. 

Five days later, we were told that the other family was not going to pursue her. She was our daughter, if we were interested. Are you kidding? YES! Close her file to anyone else!!! From that point on, we had our work cut out for us. We needed to write a letter to our current agency asking them to release our dossier from the CCAA so that it could be resubmitted with our new agency. We also needed to update our dossier with all kinds of paperwork that would soon be expiring. My husband spent the last month of his summer break running errands, meeting with our new social worker to update our homestudy and driving to our capital office across the state to get the new paperwork sealed. I won’t bore you with the timeline, but it took seven months from start to finish to have Josie in our arms.

Although we thought we understood Josie’s heart condition prior to our trip to China, it wasn’t until we had her in our arms did we really understand what her condition was all about. Josie has ToF (Tetralogy of Fallot). She had four things wrong with her heart and in most cases; surgery is done immediately on the infant to correct these problems. She was 21 months when we got her and her heart had not been treated at all. She would often turn blue and had severe shortness of breath when she did much exercising or eating. She was very small for her age (she was wearing size 9 month clothes at 21 months old) and physically she appeared much more like a 12 month old than a 21 month old. 

We arrived home on a Wednesday night and by Tuesday of the following week; we were sitting in our cardiologist’s office making plans to have her referred across the state to our University hospital for heart surgery. During this period of time, Josie was still uncomfortable with anyone (including Chris) holding her, let alone examine her. You can only imagine the kinds of screaming episodes that went on during those appointments. Keep in mind, with her fragile heart, we were trying to keep her as calm as possible. During most of her required medical exams, she was a very angry little girl. She resembled a wild animal. It was heart breaking. We ended up having her sedated during most of the exams because she was so out of control. Poor Josie had no idea why we were subjecting her to so many strange people, strange equipment, and uncomfortable pokes.

Josie’s heart surgery took place on April 23, 2008 and was a complete success. She was supposed to have been in the hospital at minimum 10 – 12 days, but she came home in 5 days. I have a whole new respect for the doctors and nurses who did everything they could to treat Josie and make her comfortable. They were an amazing group of people.

On the first day that we came home, Josie was so happy to see her big sister and her house that she spent the entire evening touching everything. It was almost as though she needed to be reassured that she was really home. 

For the next month, we had visiting nurses descent upon our home on a weekly basis to check her vitals. She hated the visiting nurses, but it was better than making a zillion trips to our cardiologist’s office. We are now on a six month maintenance schedule with Josie’s local cardiologist. She’s no longer on any heart medications and her physical activity is no longer restricted. She’s gained six pounds and grown three inches since our March Gotcha date. She’s now wearing size 18 month clothes and I’m starting to think we can almost move into 24 month shirts. She no longer turns blue or pants when she’s eating or exercising. At some point, she may need a valve replacement, but the timeline is sketchy. We couldn’t be more pleased with her progress and diagnosis. She is truly not the same little girl that we received on March 16, 2008. 

Our next big medical intervention is Josie’s upcoming hand surgery. Our special little girl was born with an extra thumb on her right hand and prior to her heart surgery, we did visit a hand specialist. Obviously, we were more worried about her heart than her hand. Now that her heart is stable, we’ve decided to move forward with her corrective hand surgery. She’ll be casted from finger tips to her shoulder for five weeks while her hand heals. Considering everything she’s gone through, I’m hopeful that she’ll adapt to her casted arm quickly. I’ll be curious to see whether this experience will make her more of a lefty than a righty. Right now she goes back and forth between both hands for eating, coloring and playing.

Chris and I were reflecting the other night about our experiences with a SN adoption. It’s not for the faint of heart. It’s certainly not something we would have pursued if we didn’t have the full support of our entire families or each other. It’s emotionally, physically and financially draining. Don’t get me wrong…I had my moments of “what have we done!!!” but it’s been well worth it in the end and we are blessed beyond belief. 

Big sister, Emma
 Little sister, Josie

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