Ashlynn, born 2011
On January 7, 2011 our beautiful, healthy (so we thought) little girl was born. I had a scheduled C-section so we were in the hospital for 5 days and then sent home since mommy and baby were healthy. We went back to the doctor a week later for the normal checkup, everything was good. The day after that is when it all changed. I woke her up around the 3 a.m. time thinking she should eat, she ate a little but wasn't that interested. I didn't think much of it, I thought she was just tired. So I put her back to bed. I woke up around 6:30 a.m wondering why she wasn't waking up crying because she should be hungry. I woke her up and tried feeding her, she ate very little again. By the next feeding she was fighting it, did not want it. By this time I'm getting upset and worried.
We called in to the hospital and the on-call doctor told the nurse to tell us to keep track of her wet diapers and if she continues not to eat to bring her in the next day. The nurse took it upon herself to contact the lactation nurse, which then the lactation nurse was very concerned and contacted our family doctor. The lactation nurse called us at home and told us that she had been in contact with our doctor and that we needed to come in right away. We left within 30 minutes of the call, however, it was an hour and a half to the hospital. By the time we got to the hospital she had become hypothermic and was in respiratory distress. They immediately accessed her as possibly having an infection and immediately called for transport to a bigger hospital.
Once there, they were having a hard time figuring out what was going, they were leaning towards some chemical metabolic syndrome. A few hours went by and my sister, (who happened to be on call at that hospital..she does the echo's) went to the attending doctor and asked if they had looked at her heart. They hadn't and my sister insisted that they check in to it. My sister went to get her machine and within seconds she knew...it was her heart. The pediatric cardiologist was at the hospital within 20 minutes of that. They intubated her and transported her to Children's Hospital of Omaha.
There we were told that she was very sick and needed to get well before they could do surgery . She had suffered severe metabolic acidosis. They told us that she had Coarctation of the Aorta, VSD, ASD, PDA, Bi-cuspid valve and she has a small Mitral Valve. They weren't sure what surgery they were going to do until they were in there. It all depended on how small her mitral valve is. After 8 days she was finally well enough to have the surgery. The mitral valve was small but thought it would be adequate for a double ventricle repair. After 9 more days in the hospital we were finally good enough to go home. It was a rough few months after coming home as we struggled a lot with eating, gaining weight and just the stress of it all.
Today, Ashlynn is doing good. She is still low in all the percentiles but she's gaining. We visit the cardiologist regularly, she has a small mitral valve, small left ventricle outflow trac and her bi-cuspid valve that need monitored. She amazes us how active she is, you would never know that she was a very sick little girl. She loves trying to keep up with her big sister Brooklynn.
While we were in the hospital, I searched the internet like crazy trying to understand all that was going on. That's when I found the little hearts website. I read every story over and over and to this very day I continue to read them....even the ones I have already read. The stories are all very touching and some are very heart wrenching. To all of you that have shared your story, thank you!
Written by Ashlynn's mom, Sabreana - Nebraska