Welcome to our CaringBridge website. We've created it to keep friends and family, both near and far, updated about our little angel.
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When we found out we were pregnant, we were thrilled! It was on my birthday. We have had a lot of trouble in the past, so we were told to come in right away. We had ultrasounds to monitor every 3 weeks. On our 12 week scan, they sat us down and said there were some concerns with possible down syndrome, and they were sending us to EVMS ( specialist here in town) for further testing. When we went there they did more testing and shared similar concerns, but were thinking Trisomy 18, which is one of the worst types of down syndrome. So they recommended a CVS procedure, or chorionic villus sampling, a genetic test. Which is kind of like an amnio, but they go through your belly right into your placenta for sample, and can be done a lot sooner, like at 14-16 weeks. After the longest week of waiting, we got a call that everything was normal, and that we were having a girl! We were beside ourselves! Speechless! But they still wanted us to come back in for another test to make sure her heart was ok. They said that a lot of times when you see the extra fluid around her like they did, if chromosomes are normal, then it can sometimes mean a heart defect. Well, here we go again. Back on pins and needles. Except this time, the news was not so good. On normal ultrasound it looked different. So they sent us for a fetal echocardiogram. After about 2-3 hours, they informed us it was not looking so promising. They thought she had numerous defects. So they then sent us to UVA in Charlottesville to meet with their OB and Pediatric Cardiologist and have further testing done. It was UVA who got to deliver all the news. These are what they know and believe she has, and we will find out more and be positive after delivery. They know she has, Heterotaxy Syndrome (with right atrial isomerism), Dextrocardia, single ventricle heart, missing her lower right chamber, large vsd, total anomalous pulmonary venous return, with it being possibly obstructed and very narrow, transposition of the great vessels, they so far cannot locate a spleen, her liver is big and could possibly have biliary artresia, possible ccam, or extra left lung lobe, possibly malrotation of the intestines, and as of a few weeks ago, about 35 weeks gestation, she developed a small leak in her heart causing extra fluid to be there. Now i know that is a lot of information, and I would explain each and every one, but they only give you a certain amount of room on here! :) But you can always google it! Basically she will have to undergo staged open heart surgeries, called The Fontan Procedure. The first one being either the first day of life or few days after, depending on how she is breathing and looking when she is born. They will go in and try to reconstruct the heart, and do some patch work over a series of surgeries. They did warn us they she may have a "blue" appearance for a while, maybe up to 6-9 months, but for her, that is ok. When she is born, the plan is we will only get to see her for few minutes, then they will take her to the NICU for testing. They will probably have her for several hours, but by the end we will have answers. Exactly how her heart is, if her intestines are intertwined, if her liver and labs are ok, and when and what surgeries she will need. As long as she is in me she is doing wonderful and growing great! It is not until she takes her first breath that she will start having problems. As her heart might not be able to keep up with her breathing and lungs when she has to do it all on her own, and not depend on me. They told us to prepare for a long journey, and a 4-6 week stay in the hospital, depending on how she recovers. We are blessed enough to have all of our family around us so the support is wonderful. Maddox knows "sissy" has a sick heart and will be in the hospital for a while and sleeping a lot, (sedated). But the dr's said he can come in and see her whenever he wants to. They are absolutely wonderful up there! We just keep praying and asking for prayers for our little angel. She is truly a fighter and we believe she will pull through. Once the surgery is done at birth, it is up to her to continue to pull through. She then, is all in God's hands. She is still labeled critical, and extremely high risk until her second surgery at about 6-9 months. Any cold, fever, or decrease in feeding could put her right back in the hospital, and could not have a good outcome. So as we remain on pins and needles, we just pray. They have scheduled me to be induced, on Sept 10, 2009. There will be a few teams there for her delivery. The OB, pediatric cardiologist, neonatologist, pediatric thorasic surgeon and the nurses. As we get updated, we will update on here for all of you to know. Thank you for your continued thoughts, prayers, and support. We love you all.