Spinning Heads

A few friends have encouraged me to start this blog to help keep people informed about what's going on in our lives right now --- because it's a lot.

It all started a week and a half ago at Pierson's 3 year old well-check. When the nurse took us back to the exam room and took his blood pressure it was 151/91. I knew that was too high for an adult and was fairly certain that was way not ok for a kiddo. She took the blood pressure 3 more times, brought in an electronic monitor, whole gamete… same results.

When Dr. Adams came in she checked P out. When she got to his ears she discovered he did have an ear infection in one ear. She said the high blood pressure could be due to the infection but wasn’t sold on it so she wanted us to come back in a week when he was done with his antibiotics.
So yesterday we went back in. In my head I decided that everything in fact was going to be a-ok. We were going to take his blood pressure and it would be a perfect 90/50, just like it had been in the past. It wasn’t. Still too high. In my head I thought "What gives?" The nurse took it again. Still too high. Ok, really, what’s going on? She said she would go get Dr. Adams and be back in a minute. The nurse came back in to the room a few minutes later and said "Let me try one more thing" --- She took P’s blood pressure in his other arm. Same reading. Ok, now I’m getting concerned.

We sat in the exam room for not very long at all and read some books then Dr. Adams came in. She said she was baffled. She had never seen a perfectly healthy, active 3 year old have high blood pressure and no other symptoms. She had called a cardiologist and was waiting to hear back from him. She started talking about what our action plan would be. We would be seeing a specialist, or two – cardiology (heart) and nephrology (kidney). Just as I started internalizing all of this Dr. Adam’s assistant came in the room and said the cardiologist was on the phone waiting to speak with her. She was gone a few minutes then came back in. She and the cardiologist had a talk and he wanted to see Pierson the next day. Why was I expecting it to be longer than that? The next day was soon… like, tomorrow. We set the appointment for 10:45 this morning.

So off to the cardiologist we went. Mommies, do you know what I mean when I say that I knew in my heart something was wrong? We prayed this was a fluke, but in my heart I really felt like we would not be leaving with good news… but I could hope against my gut feeling, right?

Pierson was absolutely perfect at the cardiologist’s office. We started off with an EKG and he lay still and made zero fuss about the electrodes. Do we have a great kid or what? Then we went in to the exam room and met with Dr. Laird. All around his office was scripture decorating the walls. You couldn’t look anywhere and not be face to face with God’s truth. He took P’s blood pressure, again. Still too high. He listened to Pierson’s heart and did a full exam. Pierson made no fuss whatsoever. Then it was time for the electrocardiogram (a sonogram of the heart). They put on a movie to watch while he was on the table. It was "Finding Nemo", a perennial favorite at our house. There he lay holding my hand perfectly still for an entire hour. I kept a close look at the sonographer to see if I could read anything from her face since I had no idea what was going on on that screen. All of a sudden I saw the shape of her lips change and she started pressing buttons on the machine. Right then I knew she had found something. She left the room then came back and told us she wanted to take some more pictures. She was focusing on one spot at the top of P’s chest for a really really really long time. She left the room again to go get the doctor. I turned around to Jeff. "She found something. Something’s wrong."

When the doctor returned he had a med student with him (never a good sign… why would they want to see a normal 3 year old?) He took some more pictures of Pierson (still focusing on that same spot). The doctor, the med student and the sonographer were all looking at this hard. Yeah, something’s defiantly wrong.
We went back to the exam room and the doctor joined us. What happened next still blows our minds. He told us that there was in fact something wrong with P’s heart. He showed us a diagram and told us what Coarctation of the Aorta is, because that’s what Pierson has. We just sat there stunned. I’m looking at Jeff and see his pre-cry face forming. I made the decision right then to show no emotion and really put on my listening ears. Listening ears or not, surreal was what it actually was. Next thing we knew we were in the surgeon’s office scheduling surgery. The surgery staff was sweet and optimistic. They assured us he would be up and going basically as soon as they remove his chest tube post-op.

Pierson has been diagnosed with Coarctation of the Aorta. He was born with this - it's basically like a kink in a hose (hose being his aorta) P has a fairly significant narrowing of his aorta. Apparently the most common way this is found is hypertension (high blood pressure) around age 3. No symptoms are present before then. Praise God for a pediatrician who took this seriously.

What this means in we are now scheduled for surgery (have a I mentioned our heads are spinning) July 6. He has pre-op and CT scan on July 5. Our surgery will be in Dallas. Pierson will spend the first 24-48 hours in ICU in a special unit just for kids with congenital heart defects (who knew there was such a thing) and then a few days in the general part of the hospital. We've heard 3-7 days in the hospital. The surgery will be taking away the unhealthy part (the kink) of the aorta and stretching the healthy parts together as one. They're hoping to go through a thoracic opening in his back rather than through his chest. The out comes for these surgeries are usually fantastic. 1 in 150 children are born with Coarctation of the Aorta. That’s a lot of kids. Why is this not more well known?

So, Jeff and I have cried, a lot. We’ve told our family what’s going on, all the while having the words coming out of our mouth and still not fully digesting them. It’s weird, because yesterday he was healthy as a horse and today he has a heart defect that requires surgery. My baby is having heart surgery. That doesn’t seem real. It isn’t real, right? No, it is. It stinks.

If it wasn’t heart related our next stop was a nephrologists. Kidney problems are often times fatal. So we’re happy with heart. Right? Yes, glad it’s not kidney. It is heart though. Praise YOU LORD that it’s not kidney.
Then my brain goes back to… it’s a birth defect, so it must be something I did wrong during pregnancy. No Jane, that’ s Satan whispering in your ear. He’s a liar and we know this. Our mighty GOD silences him. Pierson, heart defect and all was made by the same hands that formed the mountains and the seas. He tells each of us that in Psalm 139

Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God "you're breathtaking! Body and soul, I am marvelously made! I worship in adoration what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day. Your thoughts how rare, how beautiful!

We are going to have a lot more thoughts, feelings and questions over the next few days. We’re going to try to post things here so we can keep everyone abreast.

Everyone has asked what they can do… we have no idea! We’re not even quite sure what our needs are, mostly because we had none this morning.
Please join us in praying for our sweet precious gift from God. Pray God heals him completely! No side effects, quick, perfect and permanent healing. Prayers for Jeff and I would be great too if you wouldn’t mind throwing those in the mix. You very well may see us crying over the next few weeks. Please bear with us. More than that, please pray with us.