After 3 days, we found out that she had a narrowing in the left outflow tract of her heart and a narrowing in the aortic arch. It took a team of cardiologist and a heart surgeon to determine what surgury(ies) they were going to do, since she had multiple issues with her heart and was so little (she weighed 5lbs 13oz). They deteremined to repair only one of her heart conditions, due to her size.
So, at 6 days old she had a coarctation repair. After many prayers from our friends and family, the surgery was a success and she recovered VERY quickly. The narrowing of her left outflow tract will have to be monitored very closely by the cardiologists for the rest of her life. We are hoping the narrowing will grow with her, but we have no idea. If it doesn't, then she will have to another heart surgery.
Now, her next goal was to start eating by bottle again (once she was transferred to the NICU, they stopped all feedings, as she was put on a medicine to keep a part of heart open until surgery). She started eating by bottle great, but as they increased her volume, the nurses noticed she was not handling it good. Therefore, the doctor ordered a swollow study, which determined she was silently aspirating into her lungs. All bottle feedings were immediately stopped and a NG tube was placed until she went in for another surgery; to place a feeding tube into her stomach. We have no idea how long she will be on the feeding tube. She currently is going to speech therapy every week, to learn how to feed by a bottle without aspirating. Once the therapist sees improvement, she will have another swollow study.
We thought her heart conditions and feeding issues were the only problems she had, until 2 days before she was discharged. She had an ultrasound of her kidneys, which determined she has hydronephrosis on one of her kidneys and two ureters that come off both of her kidneys and go to her bladder (usually you only have 1). We do not know what this will mean, until we have further consultations with the nephrologists and urologists.
Also, after a blood test, it was determined she has Mosaic Turner's Syndrome. This is a chromosomal disorder, which means some of her chromosomes only have one X, instead of XX. We don't know which of her chromosomes are XX, until she gets older.
We have started this fund, as we didn't expect these medical expenses along with the continued follow up appointments she will have for her heart, kidneys, feeding tube therapy, and geneticist (for her Turner's Syndrome). We do not expect anything, but will appreciate anyway you can help.
Please continue to send your thoughts and prayers for Korbyn, as she still has a long road ahead of her.
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