THURSDAY, JULY 14, 2011
EK Gets an EKG due to an ASD
This morning we had an appointment with our daughter's pediatric cardiologist.
She got an EKG, an Echo, chest x rays, and a thorough examination. She had these things because she has been diagnosed with a medium sized Atrial Septal Defect, which is a hole in her heart that allows blood to leak from one upper chamber of the heart to the other.
Here's a photo Husby snapped of her on his phone just before her EKG. She didn't seem to mind the leads at all! She was a little squirmy, but I sang her favorite bedtime song God is So Good quietly in her ear, and she relaxed.
She was so good during the echo, too, which was amazing. I think I fidgeted as much as she did in that 45 minute ordeal. I think she has a little fan club at the clinic because the staff kept talking about how adorable and mild mannered and bright eyed she was.
I haven't mentioned to many people that she now has a cardio doc in addition to her pediatrician. I haven't mentioned it because when someone says BABY and HEART DEFECT in the same sentence, panic can set it.
I did some research and talked to a few moms with children who have murmurs in the weeks between diagnosis and today's appointment. I found a diagram that can explain structurally what's up with her heart.
I didn't share too much with friends, family, or the blog world because it was just sinking in for me.
And we really didn't know too many details about her condition prior to this morning, so telling people would not have been so helpful to them.
So here's the story on EK's ASD. I will update friends, family, and the blog world about it as updates occur. I won't wait so long, okay?
Three weeks ago was her two month well baby check up, and the pedi heard a murmur that he hadn't heard before. He ordered an ultra sound of EK's heart, and we had that echo done just a few days later. The results of the test came back with a clear diagnosis of a moderate to large sized ASD. We made an appointment with the cardio for this morning, which brings you up to speed on things.
EK's had no symptoms of a heart condition. She eats, sleeps, and plays very well. She is growing quickly (now 12 lbs, 7 oz and 24 inches at 11 weeks... she is in the upper %tiles so no worry there about nutrition).
The doctor urged us to treat her as a healthy baby and emphasized that she's in no immediate danger. There will be no emergency surgery or some sort of sudden death associated with the condition.
The doctor told us that people just pop out of the woodwork with stories about fatal heart conditions in infants. Or conditions that were "totally no big deal whatsoever" associated with hearts and babies. He expressed his desire for us to ignore everyone and pay attention to HER diagnosis and her medical team.
Then he told us to come back in six months (January 13, 2012) for a follow up visit. They will examine her heart using the same procedures as today to determine if the hole's size as changed. He said it is not the case that the hole will grow larger (that just doesn't happen), but there is a 30%-40% chance that her heart will have healed, rendering further procedures unnecessary.
We are praying for her to be in that 30-40% of babies who are healed by the hand of God.
The majority of children will require some sort of medical intervention, such as surgery to seal the hole or implant a plug in the hole. These surgeries are scheduled weeks in advance and aren't emergencies. We won't know if our daughter needs one of these procedures until January, or likely until a further date if they observe her again at one year old.
Early this morning I sent an email to several friends and family members, calling on them to pray for our family and the doctors today. Most of them replied back wiith encouraging words of support, and I am thankful for them.
Last night and today, I experienced a genuine sense of peace and comfort. Its not rational that a mother feel so calm when her infant daughter has a heart condition, but I experienced an entire day of peace that passed understanding. I was able to make informed decisions, comfort my daughter when she was uncomfortable, and listen well to what the doctor said.
Thank you friends for praying and thank You, Lord for this awesome gift of lucidity and lack of stress today.
Our wonderful friends the Dorrs kept DHH while we were at EK's three hour appointment. Their kids kept him busy and during that whole time we didn't have to worry about him or try to entertain him (or pry him away from all the medical devices I'm sure he would want to bang around on.) What a great blessing.
When we came home, everyone slept. DHH slept for almost four hours (good job, Dorrs!), and I rested with EK in my arms. It felt so good to know that God is in control, that she is safe right now, and that we got through the appointment so well together.
I think when I sing EK's song to her each night, I will be sure to sing these lyrics, too:
He heals the sick
He heals the sick
He heals the sick
He's so good to Elsa.
She got an EKG, an Echo, chest x rays, and a thorough examination. She had these things because she has been diagnosed with a medium sized Atrial Septal Defect, which is a hole in her heart that allows blood to leak from one upper chamber of the heart to the other.
Here's a photo Husby snapped of her on his phone just before her EKG. She didn't seem to mind the leads at all! She was a little squirmy, but I sang her favorite bedtime song God is So Good quietly in her ear, and she relaxed.
She was so good during the echo, too, which was amazing. I think I fidgeted as much as she did in that 45 minute ordeal. I think she has a little fan club at the clinic because the staff kept talking about how adorable and mild mannered and bright eyed she was.
 |
| We thought that if her brother were there, he'd be so excited to see her with the wires. but that he would probably try to plug her into a wall outlet or something. |
I did some research and talked to a few moms with children who have murmurs in the weeks between diagnosis and today's appointment. I found a diagram that can explain structurally what's up with her heart.
 |
| The yellow arrow is where the hole is. Blood can pass from Left Atrium into the Right Atrium, which isn't designed to have extra blood volume in it. This causes the heart and lungs to work less efficiently. Here is a good link that describes the condition fairly well, and is where I got the heart diagram photo. |
I didn't share too much with friends, family, or the blog world because it was just sinking in for me.
And we really didn't know too many details about her condition prior to this morning, so telling people would not have been so helpful to them.
So here's the story on EK's ASD. I will update friends, family, and the blog world about it as updates occur. I won't wait so long, okay?
Three weeks ago was her two month well baby check up, and the pedi heard a murmur that he hadn't heard before. He ordered an ultra sound of EK's heart, and we had that echo done just a few days later. The results of the test came back with a clear diagnosis of a moderate to large sized ASD. We made an appointment with the cardio for this morning, which brings you up to speed on things.
EK's had no symptoms of a heart condition. She eats, sleeps, and plays very well. She is growing quickly (now 12 lbs, 7 oz and 24 inches at 11 weeks... she is in the upper %tiles so no worry there about nutrition).
The doctor urged us to treat her as a healthy baby and emphasized that she's in no immediate danger. There will be no emergency surgery or some sort of sudden death associated with the condition.
The doctor told us that people just pop out of the woodwork with stories about fatal heart conditions in infants. Or conditions that were "totally no big deal whatsoever" associated with hearts and babies. He expressed his desire for us to ignore everyone and pay attention to HER diagnosis and her medical team.
Then he told us to come back in six months (January 13, 2012) for a follow up visit. They will examine her heart using the same procedures as today to determine if the hole's size as changed. He said it is not the case that the hole will grow larger (that just doesn't happen), but there is a 30%-40% chance that her heart will have healed, rendering further procedures unnecessary.
We are praying for her to be in that 30-40% of babies who are healed by the hand of God.
The majority of children will require some sort of medical intervention, such as surgery to seal the hole or implant a plug in the hole. These surgeries are scheduled weeks in advance and aren't emergencies. We won't know if our daughter needs one of these procedures until January, or likely until a further date if they observe her again at one year old.
Early this morning I sent an email to several friends and family members, calling on them to pray for our family and the doctors today. Most of them replied back wiith encouraging words of support, and I am thankful for them.
Last night and today, I experienced a genuine sense of peace and comfort. Its not rational that a mother feel so calm when her infant daughter has a heart condition, but I experienced an entire day of peace that passed understanding. I was able to make informed decisions, comfort my daughter when she was uncomfortable, and listen well to what the doctor said.
Thank you friends for praying and thank You, Lord for this awesome gift of lucidity and lack of stress today.
Our wonderful friends the Dorrs kept DHH while we were at EK's three hour appointment. Their kids kept him busy and during that whole time we didn't have to worry about him or try to entertain him (or pry him away from all the medical devices I'm sure he would want to bang around on.) What a great blessing.
When we came home, everyone slept. DHH slept for almost four hours (good job, Dorrs!), and I rested with EK in my arms. It felt so good to know that God is in control, that she is safe right now, and that we got through the appointment so well together.
I think when I sing EK's song to her each night, I will be sure to sing these lyrics, too:
He heals the sick
He heals the sick
He heals the sick
He's so good to Elsa.
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