This is a copy of the letter I wrote about finding out about Lorelei's CHD for the Letters of Hope for Broken Hearts campaign, if you would like to write a letter or visit the website it is www.ourlettersofhope.com. I know I haven't updated in a while and I will soon, I promise!
On April 18, 2008, our family was blessed with a beautiful daughter named Lorelei. She was perfect in every way and everyone who saw her said the same! The next morning when the pediatrician came in to talk to me he said that he had heard a murmur and that was normal but if he was to hear it again he would get an ECHO done. I didn’t think anything of it because I had known that some babies are born with murmurs. On Sunday, Dr. Bonnett came in and said he still heard a murmur and they should do an ECHO the next morning but God had other plans and the ECHO was done Sunday afternoon. We were able to be in the nursery when she had the ECHO done and they did it twice, I kind of thought that was odd but didn’t think anything about it until Dr. Bonnett called.
The phone rang in the room and I heard him say “There is something wrong with the baby’s heart, Dr. Shuler, the pediatric cardiologist will be there soon to explain everything.” My heart sank because right after that the nurse’s and a NICU doctor came and said “We have to take the baby.” There is no explanation for what I felt and the panic that had set in. Thank goodness my mom, who is a doctor, was there to explain what was going on. Dr. Shuler came in and explained to us that she had an Interupted Aortic Arch and a VSD. They were going to fly her down to Charleston,SC and she was going to be at MUSC. All I remember asking my mom after that was “Is she going to die?” and my mom assured me that she wasn’t.
We went up to the NICU to see her right before she was flown off. She only had a diaper on and she had wires coming out of her belly button. We couldn’t hold her, only rub her head. She was crying all the while. Before they fly the crew takes a picture to give the parents and of course she was screaming in the picture. John, my husband, spent the night with me that night and I don’t think we got much sleep. The next morning, I was discharged from the hospital and went home packed and drove 2 hours to Charleston.
Once we arrived in Charleston we immediately headed to the PCICU to see our daughter who had been away from us for 24 hours already. I broke down. She was swaddled in a blanket with IV’s and meds. She was not able to eat because of the medicine she was receiving and I ached for her when she cried because she was hungry.
The nurses, fellows, cardiologists and staff of the PCICU were AWESOME to us! They, of course, were concerned about their patient but they also look out for the parents and make sure they are doing ok too! They explained everything to us and Lorelei had open heart surgery at 6 days old on April 24,2008. She did very well through surgery and throughout the next few days. At one point we counted that she had 16 tubes and/or wires coming out of her at once. She is a trooper and a fighter! They told us that we might be there a month but we were only there for 2 weeks! They let us go on May 2,2008.
We continue to see Dr. Shuler, her cardiologist every 3 months as her aortic valve is not growing as well as it should be and she will at some point have to have another open heart surgery called the Ross Procedure. This will replace her aortic valve with her pulmonary valve and then she will have a valve replacement on her pulmonary valve. By looking at her you would never even know she had a Congenital Heart Defect. She is a walking (running) 13 month old and talking to everything, scared of nothing!
There have been many strides taken to get where we are in CHD research but more has to be focused on this issue! Hopefully my story will help in creating more awareness!
Jessica Friedel ~ mom to Lorelei (IAA,VSD)
So yesterday we had a First Birthday Party for Lorelei in SC, the second one will be in NY Sun April 19. She had a great time. We got to see some friends and her Heart Sister Evie came to visit as well! (She's the one in the bonnett.) Delaney also came to visit. (She's the one in the plaid dress.) One of her boyfriend's Tristen was there too! Her cakes were made by our friend Brian, didn't he do a great job??? It was SOOOOO good! Lorelei liked it too! We got donations for the Annabelle Baskets which was awesome! We appreciate it! She also got toys, clothes and some FABULOUS hair bows! I'd like to thank everyone that came. Lorelei had such a good time that she passed out as soon as everyone left! Now we are on to Easter and getting ready to drive to NY and her party there. We hope everyone has a great Easter!
