Friday was Pierson’s 3 month post-up follow up. I think follow-ups are scary for us (and probably most heart parents) because you are walking in to a great big unknown. Are you leaving with good news? Are you leaving with bad news? Are we going straight to the hospital after this? Do we need another surgery? Are we about to get introduced to heart caths? The first time we ever walked in to this office we were hoping nothing was wrong (even though my gut was telling me different) and left with our world turned upside down. We had absolutely no reason to believe anything was wrong this time but again, it’s just walking in to the unknown that’s scary. The only way I can compare it is you’ve been dropped off at the airport and you are forced to get on a plane with minimum luggage, having no idea where it will land. Are we going to land in Maui and have beautiful island weather and fresh fruit or land in the desert without any water? Of course we were praying for Maui. But my tummy was in knots about the possibility of a desert landing. We got an EKG and Echocardiogram all at the same time this time. We also had a new echo tech, which meant I couldn’t read him as well as I had read the one we had before. This echo was taking a long time, longer than the one we had in July after P’s surgery and that was making me super nervous. Pierson was yet again the perfect little heart patient. He did exactly as he was told and held still and kept quiet. What a great kid! The echo tech took tons of pictures of his aorta and aortic arch (as a heart parent, you learn to know what part of the heart the echo tech is looking at by where they have the conductor on your child’s chest). The echo tech asked questions – "So you had the surgery on what date in July?" "Who was your surgeon?" "So I see they went through his back…" Looking back that was small talk… but I was thinking "Why is he asking that? Is there more scarring than there should be? …. Has his aorta re-arc’d?)
Pierson getting his EKG and Echo
Dr. Laird came in and spoke with us once we were in the exam room. The poor little girl in the room next to us was having a complete melt down. It’s not easy being a heart kid! He looked at Pierson’s blood pressure log… that I had kept in excel spreadsheet format… because that’s how we roll in the Hale house. He took P’s blood pressure… 102/56 which was 7 under his parameter (woot!). Then he had Pierson lay down and I instinctively took P’s shoe off. I knew he was going to want to feel his pulses and check his profusion. After he got done checking P out Dr. Laird sat back down on his stool so we could chat. Gulp. Moment of truth. Ok. Here it goes. Teeth clinched, holding breath…..
"His aorta looks great where they did the repair. His heart is now a normal size and it is a normal thickness. His profusion is excellent and his blood pressure is within range. I’m fine with him discontinuing the Enalapril (blood pressure medicine). I feel good enough about Pierson’s recovery to let you come back and see me in one year." WHAT?!?!?! Wait a second, we can breathe! AND SMILE!!!! We get to go on with life and come back for a check up not in 3 months, not in 6 months, not in 9 months… ONE WHOLE YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you LORD! We wanted to say "Oky doky! See ya!" But instead thanked Dr. Laird, shook hands, gave high fives. You know, the fun stuff. We literally all danced out of that exam room and down the hall of the professional building. We didn’t even care that people were staring at us. We were rejoicing!What does this mean for us? Pierson will never be out of the woods. Any child who is born with a congenital heart defect is always has a risk of a problem arising. I am blessed to know the wife of a 29 year old who was born with CoA just like Pierson. He had his surgery when he was 2 weeks old and has lived a healthy life with no restrictions and even played college soccer. He still goes to the cardiologist and there is a possibility that he may face another surgery to replace or repair a valve in his adult life, but other than that he just… lives. He’s married, he’s a dad. He loves the Lord. His wife has been a blessing. But I digress…. What this means is that Pierson will still go to the cardiologist at least once a year forever. You think he’ll still let me come with him when he’s 25? He will always be at risk for his aorta re co-arc’ing, or a valve not working right… but that’s something we will have to address when we get there, if we ever do. We pray we never do. We can’t live in the worrying about "What if". That’s hard for a hyper-planner like me, but God has sure taught me how futile that behavior is through this. To live life in fear would also be not giving God the glory He deserves. HE has healed Pierson .God has heard the cries of his people crying out for complete healing for Pierson. We praise our Heavenly Father for this. It is His healing hands and His will that Pierson would be doing this great. Thank you Lord!!!! I don’t know why our child has been healed and others still suffer and die. That’s how far we’ve come in this. We’ve come from "why does our child have a heart defect" to "Why does ours get to go live a healthy life and our other heart friends don’t." I don’t think we will ever know the answer to that on this side of Heaven. Our God is too good to us.
People who don’t know Pierson do not look at him and think that this is a kid with a heart condition. Heart kids are really good at covering up that there has ever been anything wrong with them. Jeff and I were talking about how we feel so compelled to tell Pierson’s story over and over again so God can be given glory for what He has done and all He has yet to do. We can empathize with people who have chronically ill children now. Our job is now more than ever to praise God and encourage others when thing seem scary and hopeless for them. Something else I find interesting is how Pierson has developed a heart for other heart kiddos. I was looking at pictures of a new heart friend of ours who is fighting in the heart unit right now and Pierson was looking at the pictures too. "God will heal her too!" He says. My eyes well up with tears way more easily than they did before June 23, 2011. My heart is softer. Pierson’s heart is waaaay healthier. We will never forget how close we came to tragedy and how lucky blessed we are. I leave you with a few pictures of our life lately. Our God is awesome guys. Never forget that.
Friday was Pierson’s 3 month post-up follow up. I think follow-ups are scary for us (and probably most heart parents) because you are walking in to a great big unknown. Are you leaving with good news? Are you leaving with bad news? Are we going straight to the hospital after this? Do we need another surgery? Are we about to get introduced to heart caths?
The first time we ever walked in to this office we were hoping nothing was wrong (even though my gut was telling me different) and left with our world turned upside down. We had absolutely no reason to believe anything was wrong this time but again, it’s just walking in to the unknown that’s scary. The only way I can compare it is you’ve been dropped off at the airport and you are forced to get on a plane with minimum luggage, having no idea where it will land. Are we going to land in Maui and have beautiful island weather and fresh fruit or land in the desert without any water? Of course we were praying for Maui. But my tummy was in knots about the possibility of a desert landing.
We got an EKG and Echocardiogram all at the same time this time. We also had a new echo tech, which meant I couldn’t read him as well as I had read the one we had before. This echo was taking a long time, longer than the one we had in July after P’s surgery and that was making me super nervous. Pierson was yet again the perfect little heart patient. He did exactly as he was told and held still and kept quiet. What a great kid! The echo tech took tons of pictures of his aorta and aortic arch (as a heart parent, you learn to know what part of the heart the echo tech is looking at by where they have the conductor on your child’s chest). The echo tech asked questions – "So you had the surgery on what date in July?" "Who was your surgeon?" "So I see they went through his back…" Looking back that was small talk… but I was thinking "Why is he asking that? Is there more scarring than there should be? …. Has his aorta re-arc’d?)
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| Pierson getting his EKG and Echo |
Dr. Laird came in and spoke with us once we were in the exam room. The poor little girl in the room next to us was having a complete melt down. It’s not easy being a heart kid! He looked at Pierson’s blood pressure log… that I had kept in excel spreadsheet format… because that’s how we roll in the Hale house. He took P’s blood pressure… 102/56 which was 7 under his parameter (woot!). Then he had Pierson lay down and I instinctively took P’s shoe off. I knew he was going to want to feel his pulses and check his profusion. After he got done checking P out Dr. Laird sat back down on his stool so we could chat. Gulp. Moment of truth. Ok. Here it goes. Teeth clinched, holding breath…..
"His aorta looks great where they did the repair. His heart is now a normal size and it is a normal thickness. His profusion is excellent and his blood pressure is within range. I’m fine with him discontinuing the Enalapril (blood pressure medicine). I feel good enough about Pierson’s recovery to let you come back and see me in one year."
"His aorta looks great where they did the repair. His heart is now a normal size and it is a normal thickness. His profusion is excellent and his blood pressure is within range. I’m fine with him discontinuing the Enalapril (blood pressure medicine). I feel good enough about Pierson’s recovery to let you come back and see me in one year."
WHAT?!?!?! Wait a second, we can breathe! AND SMILE!!!! We get to go on with life and come back for a check up not in 3 months, not in 6 months, not in 9 months… ONE WHOLE YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you LORD! We wanted to say "Oky doky! See ya!" But instead thanked Dr. Laird, shook hands, gave high fives. You know, the fun stuff. We literally all danced out of that exam room and down the hall of the professional building. We didn’t even care that people were staring at us. We were rejoicing!
What does this mean for us? Pierson will never be out of the woods. Any child who is born with a congenital heart defect is always has a risk of a problem arising. I am blessed to know the wife of a 29 year old who was born with CoA just like Pierson. He had his surgery when he was 2 weeks old and has lived a healthy life with no restrictions and even played college soccer. He still goes to the cardiologist and there is a possibility that he may face another surgery to replace or repair a valve in his adult life, but other than that he just… lives. He’s married, he’s a dad. He loves the Lord. His wife has been a blessing. But I digress….
What this means is that Pierson will still go to the cardiologist at least once a year forever. You think he’ll still let me come with him when he’s 25? He will always be at risk for his aorta re co-arc’ing, or a valve not working right… but that’s something we will have to address when we get there, if we ever do. We pray we never do. We can’t live in the worrying about "What if". That’s hard for a hyper-planner like me, but God has sure taught me how futile that behavior is through this. To live life in fear would also be not giving God the glory He deserves. HE has healed Pierson .God has heard the cries of his people crying out for complete healing for Pierson. We praise our Heavenly Father for this. It is His healing hands and His will that Pierson would be doing this great. Thank you Lord!!!! I don’t know why our child has been healed and others still suffer and die. That’s how far we’ve come in this. We’ve come from "why does our child have a heart defect" to "Why does ours get to go live a healthy life and our other heart friends don’t." I don’t think we will ever know the answer to that on this side of Heaven. Our God is too good to us.
People who don’t know Pierson do not look at him and think that this is a kid with a heart condition. Heart kids are really good at covering up that there has ever been anything wrong with them. Jeff and I were talking about how we feel so compelled to tell Pierson’s story over and over again so God can be given glory for what He has done and all He has yet to do. We can empathize with people who have chronically ill children now. Our job is now more than ever to praise God and encourage others when thing seem scary and hopeless for them.
Something else I find interesting is how Pierson has developed a heart for other heart kiddos. I was looking at pictures of a new heart friend of ours who is fighting in the heart unit right now and Pierson was looking at the pictures too. "God will heal her too!" He says. My eyes well up with tears way more easily than they did before June 23, 2011. My heart is softer. Pierson’s heart is waaaay healthier.
We will never forget how close we came to tragedy and how lucky blessed we are.
I leave you with a few pictures of our life lately.
Our God is awesome guys. Never forget that.
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| With Grandad behind the CoOp @ UT |
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| Breakfast at Magnolia on our Austin trip |
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| Pierson and his best bud Jack enjoying a little icecream before the UNT Homecoming parade this weekend |
Isaiah 55:8-9 8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. 9 "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
