Annalise Elizabeth

Annalise was born in October 2001 by C-section at a healthy 9 lbs. 1 oz. The pediatrician heard a murmur and she had a cardiologist consult before Annalise was released. Her EKG was normal and we were instructed to follow up in one month. We were told this would just be a formality. Paul (her daddy) didn't attend the follow-up appointment since we thought that nothing was wrong. We were devastated to find out that she had complete AVSD and would required surgery before she was six months old. Annalise appeared healthy. She was growing, nursing all the time but she also hardly slept and cried all the time. She was our first child and we didn't know what normal was. She was put on digoxin and Lasix and we were to follow up in a week.

So we try to prepare for the unimaginable. Her condition rapidly deteriorates and just before her first Christmas we are told that her surgery is scheduled for January 3 and she will only be 2.5 months old. She has the complete AV-Canal repair and returns home in a record 6 days. She begins to sleep through the night 2 weeks after returning home. We are told that there is a small chance that she may require another surgery should her Mitral Valve begin to fail but that it looks unlikely.

When she was about 2 she tells me she hurts often and is unable to tell me where. We follow up with the cardiologist and he tells us her mitral valve is leaking and puts her on enalapril. He thinks that the medicine will be all she needs.

When she is almost 3 she begins to tire easily but never really seems out of breath. She just tells me that she feels "yucky". I thought she was coming down with an infection and I waited for a fever, cough, sniffles etc. but she never got sick. Then I thought maybe it was her heart but really wasn't sure. We were not scheduled to see the cardiologist for a few months but I moved up the appointment. We found out that she had severe subaortic stenosis caused by a membrane that had grown in her left ventricular outflow tract (LVOT) and that this was complicating her mitral regurgitation. She was scheduled for surgery 2 weeks later.

They removed the subaortic membrane and tried to repair her mitral valve. Once they had opened her up they found that her aorta was 80-90% blocked. A blockage this bad could have killed her long ago. This membrane had grown in 3 months since her last appointment. Her mitral valve was a little tight but they believed it would loosen up. This is what normally happens.

Three months later, just after Thanksgiving, Annalise begins to make a strange grunting like sound while she is breathing as she is trying to go to sleep at night. We take her back to the cardiologist and he finds that her mitral valve has become stenotic with scar tissue and that she is in congestive heart failure. She is scheduled for her third open heart surgery in another two weeks. They will try to repair the mitral valve again but most likely will have to replace it with a mechanical St. Jude's valve.

She ended up getting the mechanical valve. That part of the surgery went well. However, when they were taking her off bypass she still had a large gradient in her LVOT. So they had to put her back on bypass and cut out some tissue in her LVOT. Annalise healed quickly and returned home on Coumadin therapy that will last her whole life.

Currently Annalise is doing quite well. Having a child on blood thinners is not as scary as we thought it would be. It has become "our normal" just as many other things have. She still has moderate subaortic stenosis that is caused by the annulus of her mechanical valve pushing in on her LVOT. Hopefully this area will open up as she grows. She has grown a lot in the last year since her surgery and the gradient has inexplicably worsened. So now we are seeing the cardiologist more frequently to see what happens.

We know that there are a lot of possibilities on what could happen to her heart in the future. Right now we live moment to moment and try not to worry. God has blessed us so much and we believe that He will take care of her now and in the future just as He has in the past. There are so many things that could have gone wrong so many times. There are times when things were very dire and we could have lost her. Our prayers and the prayers of other saved her. We have been shown that miracles still happen. And that is what we continue to pray for, another miracle and that she will be healed.

For now, we know she will require another surgery when she weighs 80-90 pounds. That is so far away it seems like such a luxury to not have another surgery until she is a teenager. I pray we make it that long between surgeries. If not, God will continue to provide us the Grace to make it through.