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RYLIE'S HEART PAGE!



Thanks for visiting! This page has been devoted to my daughter, Rylie, who has a congenital heart defect (CHD). Although you would NEVER know it just by looking at her. She has always been a very active child even before her corrective surgery!

Rylie was born on Sept. 1 of '95 with no complications during the pregnancy. I had ultrasound after ultrasound and nothing was ever picked up about her heart. I was a high risk pregnancy because of a severely malformed uterus and had previously had problems so ultrasounds were done quite often to make sure she was growing and had enough room.

Although the cord was wrapped tightly around her neck when she was born there was no complications and no signs of any problems (at least that I knew of). The nurses who checked her after her birth knew there was a significant murmur but they didn't clue me in. I was in the hospital for two FULL days before anyone let me know that there was a problem. The pediatrician hadn't even said anything the morning before when he had checked her out!! Now he was coming in to say that they had detected a murmur and that they were calling in a children's cardiologist.

The pediatrican said they were going to run a few tests to determine the cause of the murmur. After several hours the cardiologist came into my room with a piece of paper in his hand. He began to tell me the scariest thing I had ever heard in my life. Rylie had a ventricular septal defect (VSD) and a patent foramen ovale (PFO). He said that the PFO wasn't the problem, it was her VSD. A VSD is a hole between the two vetricles, the lower chambers of her heart. It was a huge hole that was causing the pressure on one side of her heart to be too strong and her fresh, brand new lungs were having to work harder. He said he had seen children with VSD'S this big and they didn't require surgery to patch the hole because the hole had closed on their own, but it was a rarity. If her hole would have been small there would have been a chance of it closing on it's own. He confirmed what I was afraid of...That Rylie would require open heart surgery. And she would probably have to have it before she was six months old.

I was scared to death. He said they wanted to put her on some heart medication (Digoxin) to help her heart pump more efficently and would keep her another night to make sure she didn't have a reaction to the medication. She was also jaundiced and was another excuse to keep her over night. I got clearance from my doctor to stay the night with her even though I should have been discharged that morning. I couldn't believe this was happening. I kept thinking that her heart couldn't be in that much danger. I knew nothing about these things. After all...I had never heard of a VSD, let alone the fact that it was the number one birth defect in children!

The next morning we were finally able to take our little girl home. They made sure I was able to give her the right amount of medicine and was able to check her heart rate before they would let us leave. We had to check her heart rate every evening before giving her the Digoxin. If her rate was above a certain number, we were told not to give it to her. Giving her that medicine made me so nervous at first. I knew too much of this stuff would kill you. I always made sure it was right on the line, not even a smidgen above it. After a couple weeks of doing that we were able to just give her the medicine without checking her heart rate.

I know we were constantly at the doctor's in those first six months because not only did she have her heart defect...she suffered from gastrointestinal reflux, which means the valve to her stomach didn't close and she would vomit everything! Her first several weeks were very frustrating. She would cry all the time... all night. Nothing would soothe her. I was breast feeding her but she was not gaining any weight. She was born at 7lbs 2 oz and still weighed about that amount at 4 weeks! The lactation nurse at the pediatrician's couldn't understand what was wrong because she knew I had enough milk. Rylie would latch on and off and on and off. She was six weeks old before they realized that she was too tired to eat. Her heart was just wearing her down and she didn't have any energy to nurse. When I think back about those first few weeks, I feel so terrible, it brings tears to my eyes knowing now that we were unknowingly starving her then. We then moved to a bottle with me pumping my breasts so she wouldn't need formula, but it was pretty evident how little she was so they decided to also supplement with preemie formula (which has two more calories per ounce). Rylie was still too tired to eat, even from a bottle and I had to resort to forcing her to eat every hour, even if it was just an ounce. If she ate two ounces, I would wait two hours. The whole point in waiting 'til she was six months old to do her surgery was so that she would get bigger, stonger and have a few more pounds, but at the rate she had been going, it didn't look like she was ever going to gain any! Finally, slowly, she was gaining weight. The feeding her an ounce every hour was working!

At five months, her cardiologist told us that her heart was failing and that they needed to do a cardiac catheterization on her in preperation for the surgery. The cath. would tell the surgeons exactly where the hole was, what the pressures where in her heart and approximately the size of her hole. He said he could do it in our local hospital or we could choose to have it done in St. Louis at the children's hospital. I asked his abilities in doing the cath himself and made sure I would feel comfortable in him doing the cath. I did feel comfortable enough in having him do it. But the problem turned out to be our local hospital and not the cardiologist. The scariest moment ever in my life was about to occur. Not even her open heart surgery had me this scared...

Rylie's Cath. and Surgery

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John 3:16

Jennifer

jennysdisney@hotmail.com
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