Some of you may have noticed that our adoption process has been moving along rather quickly. (Or maybe you've just noticed that I've been making the 2-1/2 hour drive to our state capital about every other day lately.) We officially started this adoption from scratch on December 30. In spite of some paperwork drama, our entire dossier should arrive at our agency -- notarized, sealed, and ready to go to Ch*na -- on Tuesday!!!
Part of our rush is because we absolutely cannot wait to hold this sweet girl in our arms.
(Can you blame us? Look at the sweetness!)
But there's another reason, too. As I mentioned before, our Li'l Bean has an unrepaired heart condition. Most children born with her heart condition have surgery when they are between four and six months old. Our girl will be two in May.
Being as this is CHD (Congenital Heart Defect) Awareness Week, I thought it would be an appropriate time to share a little more about our Bean's broken heart. Li'l Bean has a condition called Tetralogy of Fallot or TOF. People with this condition usually have a combination of four heart abnormalities (although some have only three and some have even more). Her medical records are a little vague, but it appears that Bean's heart has five defects.
Here's a quick summary of what's going on in Bean's heart. (I'm a newbie heart mama, so this is a very basic description.)
1.) Pulmonary Infundibular Stenosis - The outflow tract of the right ventricle is narrowed. This makes it difficult for blood to leave the right ventricle.
2.) Overriding Aorta - The aorta is the largest blood vessel in the body and usually connects to the left ventricle. In Bean's heart, the aorta is connected to both the left and right ventricle. Thus, it is said to "override" the right ventricle.
3.) Ventricular Septal Defect (VSD) - This defect means that there is a hole in the wall between the two ventricles in Bean's heart. This hole allows oxygenated and unoxygenated blood to mix in her left ventricle.
4.) Right Ventricular Hypertrophy - The heart is a muscle. Because of the narrowing of the tract leaving the right ventricle, the wall (muscle) of the right ventricle works overtime to pump blood through that opening. The muscle is thicker than normal because it is working so hard.
5.) Left Pulmonary Artery Stenosis (This defect occurs in 40% of people who have TOF.) - I'm not 100% sure that Bean has this abnormality, but it appears that she might. This means that her left pulmonary artery is narrower than it should be.
What does this all mean? Basically, the combination of defects in Bean's heart are working together to hinder the flow of oxygen to her body. TOF is a cyanotic heart defect, meaning that people with unrepaired TOF have low oxygen levels and often appear blue because their body is receiving a mix of oxygenated and unoxygenated blood. This lack of oxygen is exacerbated when they are upset or exerting themselves. Li'l Bean is cyanotic and has clubbing (abnormal curling) of her fingers due to a lack of oxygen to her extremities.
After we requested to review Bean's file, we got this sad little video. (Yes, we have a real live video of our daughter!) In the video, Bean is very upset. You can see how blue she is (especially over her upper lip). If you look closely, you can also see the clubbing of her fingers.
The Child Advocacy Specialist from our agency emailed the video to me the week after Christmas. The first time I watched it, I just knew Bean 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.
So...what does the future look like for our Li'l Bean? First, she needs to surgery to fix her little broken heart. Hopefully her heart can be repaired in one surgery. She might need a series of surgeries. There's also a slight possibility that the doctors will be able to help her heart but not fully repair it. And, while we certainly hope this isn't the case, she's ours no matter what.
And after surgery? Well, maybe she'll be an Olympic gold medalist like this guy. (Betcha' didn't know Shaun White has repaired TOF.)
Photo Credit: www.shaunwhite.com
Photo Credit: www.theoldergamers.com
Or maybe she'll just be a little girl who loves to ride bikes and play princess and get into all kinds of mischief with her big sister and big brothers. A little girl who is loved. A little girl who knows what it means to be part of a family.
We can't wait to make her part of ours.
Being as this is CHD (Congenital Heart Defect) Awareness Week, I thought it would be an appropriate time to share a little more about our Bean's broken heart. Li'l Bean has a condition called Tetralogy of Fallot or TOF. People with this condition usually have a combination of four heart abnormalities (although some have only three and some have even more). Her medical records are a little vague, but it appears that Bean's heart has five defects.
Here's a quick summary of what's going on in Bean's heart. (I'm a newbie heart mama, so this is a very basic description.)
1.) Pulmonary Infundibular Stenosis - The outflow tract of the right ventricle is narrowed. This makes it difficult for blood to leave the right ventricle.
2.) Overriding Aorta - The aorta is the largest blood vessel in the body and usually connects to the left ventricle. In Bean's heart, the aorta is connected to both the left and right ventricle. Thus, it is said to "override" the right ventricle.
3.) Ventricular Septal Defect (VSD) - This defect means that there is a hole in the wall between the two ventricles in Bean's heart. This hole allows oxygenated and unoxygenated blood to mix in her left ventricle.
4.) Right Ventricular Hypertrophy - The heart is a muscle. Because of the narrowing of the tract leaving the right ventricle, the wall (muscle) of the right ventricle works overtime to pump blood through that opening. The muscle is thicker than normal because it is working so hard.
5.) Left Pulmonary Artery Stenosis (This defect occurs in 40% of people who have TOF.) - I'm not 100% sure that Bean has this abnormality, but it appears that she might. This means that her left pulmonary artery is narrower than it should be.
What does this all mean? Basically, the combination of defects in Bean's heart are working together to hinder the flow of oxygen to her body. TOF is a cyanotic heart defect, meaning that people with unrepaired TOF have low oxygen levels and often appear blue because their body is receiving a mix of oxygenated and unoxygenated blood. This lack of oxygen is exacerbated when they are upset or exerting themselves. Li'l Bean is cyanotic and has clubbing (abnormal curling) of her fingers due to a lack of oxygen to her extremities.
After we requested to review Bean's file, we got this sad little video. (Yes, we have a real live video of our daughter!) In the video, Bean is very upset. You can see how blue she is (especially over her upper lip). If you look closely, you can also see the clubbing of her fingers.
The Child Advocacy Specialist from our agency emailed the video to me the week after Christmas. The first time I watched it, I just knew Bean 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.
So...what does the future look like for our Li'l Bean? First, she needs to surgery to fix her little broken heart. Hopefully her heart can be repaired in one surgery. She might need a series of surgeries. There's also a slight possibility that the doctors will be able to help her heart but not fully repair it. And, while we certainly hope this isn't the case, she's ours no matter what.
And after surgery? Well, maybe she'll be an Olympic gold medalist like this guy. (Betcha' didn't know Shaun White has repaired TOF.)
Photo Credit: www.shaunwhite.com
Photo Credit: www.theoldergamers.com
Or maybe she'll just be a little girl who loves to ride bikes and play princess and get into all kinds of mischief with her big sister and big brothers. A little girl who is loved. A little girl who knows what it means to be part of a family.
We can't wait to make her part of ours.



No comments:
Post a Comment