Thank you to everyone who emailed and sent Private Messages through Facebook about Dolly. She did great with her short pre-anesthesia exam today and then played hard at the Children’s Museum. She is currently sleeping off her day, which is good, she has another long day tomorrow.
Every once in awhile, a child touches my heart and I agree to advocate for that child for adoption. I feel two ways about doing this. It is necessary to shine a spotlight on children who would otherwise end up nameless on a list of orphans, but these kids shouldn’t need the spotlight shone on this, because they are a light unto themselves. This particular child is listed with the amazing agency that helped us bring Mighty home. It doesn’t get much better than WACAP, so when they asked me to help advocate for her, I was all over it.
Meet Lena. She is waiting at an amazing medical home in China. Lena has a complex congenital heart defect, and the timing of receiving her file for advocacy couldn’t have been more perfect. I hand carried it with me on the plane as Dolly and I met with some of the best heart surgeons in the country. I also asked a good friend and fellow heart mom to ask her daughter’s care team to review the file. She did, and for once in the Cardiac world, there seems to be a consensus of opinion on something…there is probably more to this case then what the file lets on.
We are trying to get updated information on Lena, but for now, her case is slightly puzzling to the Cardiologists we have asked for an opinion. You see, amazing Lena already had a heart surgery in China that attempted to repair some of what was wrong with her heart. Within hours of the repair being completed, it had to be taken down again to save Lena’s life. Why this happened is unclear. Both of the American Cardiologists who have reviewed Lena’s file feel that her original diagnosis may have been more complex then what they thought and that the repair she had done may not have been quite right for her unique anatomy.
Whoever steps forward to adopt Lena would have to be prepared for the unknown. Lena’s lack of heart repair have also left her with a diagnosis of pulmonary hypertension. Dolly also bears this diagnosis. I won’t lie, it’s not an easy diagnosis, but it is do-able. The family that steps out to adopt Lena may want to consider how near they live to a pediatric heart center with experience dealing with this diagnosis. We aren’t, and here Dolly and I sit, halfway across the country. I wouldn’t change anything about Dolly, or her adoption, but I sure would like to live closer to the pediatric heart experts. Lena also has a cleft palate that has been repaired, but kids with that diagnosis often need ongoing therapies to help with speech.
After having said all that, you are probably wondering why anyone would step out and even consider this?!? I think her tiny face says it all.
As mom of a medically complex child, there is so much to be gained from saying okay. Words wouldn’t do justice to all the lessons Dolly has taught me in her year and a half of being mine. I am a completely different person because I am her mom. I have learned not to sweat the small stuff. My place in this world has been put into perspective. She has made me a better human being. And, all that came in one very cute little package.
I also need to point out that my precious baby owns those same piggy jammies. There’s something about a little girl in her footie jammies with a mouth full of fig newton.
–FullPlateMom, who loves her little piggy.