Wednesday, February 5, 2014

Heart To Heart

Yesterday Cora had an appointment with the pediatric cardiologist. I wasn't sure what all it was for since the NICU scheduled it before Cora was released, I assumed they were going to do another echo on her heart to keep monitoring her heart murmur.

I had prepared to drop Kimball off at Julie's house who volunteered to watch him so that Lance could go with me. I knew I would need Lance's support and an extra set of listening ears. But the day before, Kimball had a fever. Shoot! I couldn't let him go to Julie's house and get her kids sick too. So we decided it would be best if Lance came home from work and stayed with Kimball, I had to brave the doctor appointment on my own.

It was a long four hour appointment! First she had an echo done which was interesting trying to get her not to move at all for an hour. I'd fed her and bundled her up so she would be in Sleepyland and very cooperative for the echo. That worked until I had to undress her. She woke up and wasn't too happy to be hooked up to all the cords, covered in sticky gel, and a little chilly. I tried my best to calm her down and we just had to plow through it. Then we waited in the waiting room for a bit before they called us back to have an EKG done, genetic questions answered, and her height and weight taken. Then I waited some more for the doctor to finally come in and speak with me. After reviewing the echo she found two things wrong with Cora's heart. This is how they explained it to me:

#1 Pulmonary Stenosis. It basically means the pulmonary valve doesn't open all the way or the leaflets are thickened which blocks blood flow to the lungs. To correct it, they do surgery by going through the femoral artery and inserting a catheter in the valve. We knew about this condition in the NICU although they only referred to it as a heart murmur, we didn't know the exact diagnosis. In the NICU Cora's level was 'mild' and it has since worsened to 'moderate.' She has a follow up appointment in a month to see if this condition has improved or worsened and then they will determine if and when she'll have surgery. Most likely she'll have the surgery.

#2 Atrial Septal Defect. It basically means there's a hole in the middle part of the atrial septum, between the left and right chambers. It typically has a flap that acts as a trap door, but Cora's trap door isn't closing. Her hole is a "good size." This condition doesn't affect infants or children but does cause problems in adults. To correct it, they do surgery by going through the femoral artery and inserting a catheter. She has to be 30 pounds before they'll do the surgery so we've got a few years before this will happen, about two or three years old.

Both of these conditions could correct themselves, time will tell. Worst case scenario she'll have heart surgery in a month or two and again at 2-3 years of age. Once these procedures are done she'll have nothing to worry about as a child or adult. Also, the procedures have a high success rate.

A lot of people have asked how I am holding up. Of course you never want to find out that your child has problems or needs surgery. We've known since 20 weeks gestation (7 months ago) that Cora had one or more issues. Most of these issues have been resolved. For seven months we have heard nothing but, "she could have a heart condition, she could be fine, she could have a genetic disorder causing several things, she could have this or that abnormality, she could be fine, we just don't know until she's born....." and so we've never known anything but speculation and guesses for seven months. Honestly, I feel relieved! I'm relieved to finally have an end to speculation and know exactly what abnormalities Cora has, that there's been a diagnosis and they have a name. No more "we aren't exactly sure, we just have to wait and see." I'm relieved that there is treatment because it means she can live a normal and full life just like any other child. I've never had to watch a child go through surgery so I'm sure if things get to that point it will be heart wrenching (no pun intended). I'm sure I'll be worried and on pins and needles but there's no need for that right now. For the past seven months and for the coming years I will continue to fight for her health and happiness, to give her the best care possible, and to be optimistic and exercise my faith in our Savior, Jesus Christ.


Elaina said...

Didn't know this was going on while pregnant with your sweet little girl. Let me know if you need anything!


Alisa said...

You are such a strong woman! I have always thought so. She is such a beautiful baby! It is very obious that Cora and Kimball are siblings. It was so good to see you a couple weeks ago. Keep the updates coming. :) Prayers to you, your family, and your doctors.