Monday, April 1, 2013

14 days

A few days after Miles was born, I noticed that his mouth/nose would go light white or blue-ish anytime he nurses. He would have labored breathing and fall asleep way too early during the nursing. I brought it up to Dale, who didn't really notice it, and my mom.
We watched it for a few days and  I told Dale to remind me to bring it up at our doc appointment for Miles when he was 1 week. Both of us totally forgot--DUH!!
I kept watching it and it just kept nagging at me, so we called the pediatrician when he was 2 weeks & he told us to go to Cooks' ER. We were coming back from Dallas and had to head home to get more stuff (diapers, etc) before heading to the ER.
Once we get there, the ER doc asks all the basic questions about when, where, etc. with the blueing (which is called cyanosis) and he thought he heard a slight murmur. Both my mom & Dale's dad had one & grew out of it. The ER doc wanted to do an ECHO, EKG, and get a chest Xray to make sure his lungs were clear.
We do all the testing and wait. We waited and waited and waited and we joked that either a) they were backed up or b) we were going to get some really bad news. A few minutes later, the nurse comes in and tells us that they are super behind & the doc should be in soon. WHEW! That made us feel soo much better.
When the doc came in, he had a laptop with him and my heart just sank. He told us that Miles had not one, but two holes in his heart and that he would have to have open heart surgery to repair them. He gave us several names of the defect and asked if we had any questions. Neither one of us did. Miles was 14 days old.
So, after that, we called the cardiologist they recommended and made an appointment for the first available one.
We went and they did a review of the tests and he told us that one hole was 7mm and the other was much smaller. Since they didn't close by 14 days, they wouldn't and surgery is definite.
Our job right now is to keep Miles healthy and he can't be around any sick or germy people. He is doing well and gaining weight right now. If he starts to slow his gaining or doesn't gain, we'll have to do the surgery much sooner than the 6 month mark which was given to us. That puts us at the end of summer in August/September.
His heart defect is known as Endocushion Cardio Defect or Atrial Septal Defect (ASD) or Artioventricular Canal Defect.  Miles has two holes, one in the atrial portion of the heart and one in the ventricular part. This means that blood (oxygenated and nonoxygenated) mixes and moves freely between the chambers. It is the most common (or second most common) heart defect and is associated with children with Down's Syndrome. Miles does not have DS.
Miles' heart defect is primum meaning it will not close on it's own and partial meaning there is only one defect.
Here is a normal heart:
In a normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped through the pulmonary artery into the lungs, where it receives oxygen. And oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped through the aorta out to the body. 
Here is Miles' heart:
Another way to look at the heart differences side by side:
So, we watch and wait and pray for health and peace for Miles. It is hard to watch him struggle already and not be able to do anything about it. We do have to worry about congestive heart failure, but not in the sense of his heart will stop. We have to worry about his heart over working and the blood will mix too much; which will not oxygenate his body and organs.
Here are a few websites if you want to learn more:
Mayo Clinic
He will be 4 weeks on Tuesday.


  1. Oh Mary, I'm sorry. It is so painful to watch your children struggle at anything. You guys will be in our thoughts and prayers.
    Sending much love from Korea....

  2. Mary---I am so sorry for sweet Miles and for you guys to be facing this. You were heavy on my heart yesterday and I was going to sit down and check in with you today...and then I saw this. I am praying for you guys and Miles. I pray that at 6 months--things are better, holes are healed and this sweet boy amazes everyone! Love and hugs!!!

  3. Poor baby!! I'm so sorry that you're already having to face such a difficult situation with Miles! I will be keeping my most positive and healing thoughts with him and hoping they get him fixed up quickly and fully :) Hugs!!

  4. Huggs . Let me know if there is anything you need.

  5. I'm so glad you followed your instincts to find out what was wrong. I will keep all of you in my thoughts.

  6. Wow, Mary - I'm so grateful that there is such a thing as "mother's intuition". I'll be praying for Miles, a safe and healthy journey to 6 months, and peace for your family so that you can enjoy your time with your sweet little addition.

  7. He's so beautiful. Many, many prayers for all of you.

  8. Hugs..I am here. No matter the time or
    Prayers are with you and HE is there..when 3 or more gather in his name..
    wish I lived closer..would help with chores and errands..hugs again

  9. Prayers for you and that sweet baby boy!

  10. Mary
    My brother had a similar hear defect and at the time (32 years ago) due to to other complications (respiratory hypertension and renal hypertension) could not be flown to the then only hospital that could do the surgery. Another child from out community was part of the then test case of children. Billy lived until he was 20 without surgery. I believe in my heart and soul that Miles will be fine. He has you and Dale as parents, opportunities for surgery and wonderful brothers. I wish I was there for you physically, but know that I will be praying for you. But know that your baby will be fine. He is strong in body, heart and soul because he is your child!