Ashley

Our daughter Ashley, was born June 7, 2010. She scored 10/10 on her Apgar and looked perfectly healthy. The day after birth a nurse and doctor came in to listen to her chest, saying that the day before they had heard a "clicking" noise in her chest, but they were still unable to hear a murmur. The following day the same nurse came back again, only this time she heard a loud murmur. She sent a doctor up to listen, who confirmed the loud murmur, but said it was likely just a benign, innocent murmur. To be safe, he was sending a pediatrician up to check on her the next day.

That following morning (three days after birth), the pediatrician came to listen to her chest. He confirmed a loud murmur, and told us he felt quite sure she had a hole in her heart. While we were a little worried, everyone still kept telling us that it was likely small, innocent, nothing to worry about. We were sent to a larger, regional hospital that day, so that Ashley could undergo an echo. They did a direct link with a Children's Hospital, and we spoke to the pediatric cardiologist who confirmed that Ashley had a hole in her heart. We were given a few warning signs to watch for, and sent home. We would get the full report at her two week check up with her family doctor.

Things went okay the next week or so, though we noticed that she often had a hard time nursing, and would often fall asleep eating. Then we noticed her belly was getting quite bloated looking, but figured since she was such a gassy baby, that that was the cause. Then one night while I was holding her, I could feel her heart pounding. I started counting and her resting pulse was racing away at 200 bpm. We rushed her down to our local ER; however, since they were unfamiliar with such conditions, they sent us home after her pulse returned to normal, saying she was likely "trying to poop".

The following day was her two week follow up with her family doctor, and within 5 minutes, we were told that she was likely in congestive heart failure, and we were rushed back down to the regional hospital where she was seen by a neonatologist, and they consulted again with the pediatric cardiologist. It was confirmed that Ashley was in early stages of congestive heart failure at only two weeks old. We also learned that she had two holes in her heart, a small ASD, plus a moderate sized VSD. She was started on Lasix.

The following month was filled with doctor's appointments, follow ups, symptom checking, a million questions, fears and concerns. We did find out that her hole was large enough that she will require open heart surgery to repair it. We're still waiting for that date, as as long as she continues to gain weight, they want to put it off for a bit.

At her 6 week check up it was learned that her heart was starting to enlarge. Also, due to her feeding issues, she was down to taking only 10-12 oz per day, hardly enough to keep her growing. Her Lasix was increased, and they added Digoxin & Spironolactone. Since these medicines can throw her electrolytes out of whack, she now has to go for weekly blood work.

And so far, that's our journey. She is currently 7 weeks old, and goes for her first round of blood work tomorrow. We've been thrown into a crazy journey that we never imagined while we were pregnant. I've joined support groups left, right and center and find they do help. It's so great to be able to ask questions and hear from other's who've been there, or who are currently "there".