Tuesday, August 16, 2011

Lorelei's Heart Story

Lorelei was born via c-section in April 2008. I was having some blood pressure issues so we had to deliver her 2 weeks early. She was perfect. The next morning her cardiologist heard a murmur and said he would listen to her again and if it was still there he would call for an ECHO. I didn't think anything of it because I knew that a lot of babies were born with murmurs. Dr. B came in and heard the murmur again and called for an ECHO for the next morning (Mon). Well we were lucky, the ECHO technician was there that Sun afternoon and did the ECHO. Next thing we knew we got a call from Dr. B saying that there was something wrong with Lorelei's heart and a Pediatric Cardiologist was coming to explain everything to us.

Meanwhile, Lo was taken up to the NICU to get ready to be flown to MUSC in Charleston were she would have to have surgery. Dr. S came in to talk to us and told us Lorelei has an Interrupted Aortic Arch and a VSD. She would require surgery. That night, she was flown to MUSC and we had to make phone calls. I was still in the hospital because of my blood pressure issues so I was released the next day. That Monday we drove to Charleston (the LONGEST 2 hours of my life). She was in the PCICU and had all of these tubes and wires coming out of her. All I could do was cry!

Thursday she had her surgery. John and I both held her before she left and she did well through surgery. We were in PCICU for a few days then moved up to 7C where we had to learn how to feed her again and take care of her. We brought her home almost 2 weeks later. We learned how to deal with reflux and fussiness and to take care of her "zipper".

We went to Dr. S every 3 months for a check up and a little over a year after her first surgery, we learned that she required a second surgery for some sub-aortic stenosis issues. Some tissue had grown under her aortic valve and was increasing the pressures in her heart. When Lorelei was 17 months old Sept 2009, she had her second surgery. We went in on a Monday and gave her to the surgeons for a second time. One of the hardest things I had to do. She did awesome again and we were discharged from PCICU the Friday of that week, 5 days and she got to go home after heart surgery! She is my Rock Star!

We have been visiting her Pediatric Cardiologist every 6 months waiting to hear the "See you in 1 year" but instead we heard, she will have to have another surgery. My heart sank. She will be older and know what is going on! We go back in December, thankfully after Christmas, to find out when. All of her ECHO information has been sent to her surgeon at MUSC (who is the BEST) and he will decide whether it will be in the summer of 2012 or sometime later then that! Until then we will keep praying for her and our other heart friends!