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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.
Apr 22, 2010 12:37pmwell, the days have come and gone and its hard to believe its already been 6 months. my little angel would have been 7 months old. and my heart still hurts like it was yesterday. we are all hanging in there, some days are better than others. brant is good. same old thing with him, work and now that the weather is nicer maybe he'll get out and golf again soon. that's his good "me" time! maddox is good also. he is doing wonderful in school and loves every minute of it! its hard to think that my baby is starting kindergarten in september! ahhh... where has time gone! he turned 5 in december and we have promised him for years that when he turned 5, we were taking him to disney world! so in march, we went to disney for almost 2 weeks. we got to go with close family, my momma, my aunt and uncle, cousin and nephew, well, her son. my poor dad was stuck working out of town at the time so he was not lucky enough to join us! and you know we had a blast! we rented a house for a week with a pool. the fam was there for the first week and then it was just the 3 of us for the rest of the time. and it was a blast! we also got to do seaworld, and he got to feed the sharks and feed and pet the dolphins! amazing! and we did universal studios and islands of adventure, where he got to meet all the super marvel heros! wow life was good!! he was in his glory! and so were we... then home and back to reality! and he's doing good. he has his days though where he really misses sissy. he gets upset that she is not here and still questions why God had to take OUR baby. there have been some rough nights too. we have pictures up everywhere of course and a big one in his room, and there are nights when he would just cry and cry. and i would tell him that was ok, its good to cry, it makes us feel better. and its so hard not to cry sometimes. like when he says some things, like when someone has a baby (specially a girl) he says, well how come they got to keep their girl (or baby) and we couldn't keep ours? or why did God have to take OUR baby? and now even wishing he was one of his friends because they have a sibling! i mean, don't most kids wish they were someone else because of the toys they have or somethin! not because they are lucky enough to have a sibling! man some of those are so hard to answer. and i guess i made Heaven sound great because he wants to go, and some days, i agree with him! haha we joke like, lucky sissy, she gets to be in Heaven and play all day! we talk about her daily and sing to her at bedtime. and maddox wishes her sweet dreams... after he kept questioning why God takes babies in general, i told him, well, could you imagine if God only took old people, Heaven would be boring! lol that's why he takes babies that are in mommies belly's, little babies, children, mommy and daddy's, and grandma's and grandpa's. so there are all different types of people and its fun! and sissy, well she is just EXTRA special, that's why God took her. i mean, poor kid, he knows about one of the one's we lost because we were like 15 weeks and he was with us at the dr's for the ultrasound, so i had to add the comment about babies in mommy's tummy. ya know. and here he is, just like us, thinking sissy was just going to have a sick heart and need few surgeries, then she would be good and live a normal life. but then her life plan changed... and we will never truly understand why. and im having to explain this to my 5 yr old, but in terms that make sense. i mean, my poor boy is having to grow up in so many ways TOO soon! and its not fair!! im still trying to figure out myself why God would not only take my beautiful baby girl, but put my little boy through all of this heartache and confusion. let him be a kid! so there is a lot i know i will never understand. i mean, i have friends with babies that i don't see, and friends who have recently had babies that i still have not seen, and friends who are pregnant, and it all breaks my heart. i know part of me is being selfish, but its so hard. i think im ready now, but, yeah, still hard. owell, i have to get ready though because we are expecting our first neice to be born in august!! woohoo! and me... well, lets just say, im still wondering when all this gets easier. there are still days where i could just lay in bed all day and not get up. its still hard at times to get up. but i do. for maddox. he still needs his mommy and i don't miss a beat with him. my poor husband suffers with me and my emotions! but hey, he married me! haha i know she is finally at peace and in no pain, so i'm at peace for that. but im still selfishly mad because i wish she was still here with me, and healthy. i often wonder what she would look like now. especially at work when i see babies that are her age. i feel like i still can't find all the pieces to my heart, and not sure if i ever will... anyways, i could go on and on about that... and as far as more babies go, well... we will see. if you ask madd, he is ready NOW!! haha and he asks all the time, and i just tell him, well bud, we have to see what is in God's plans for us. i have a history with a lot of miscarriages, so we are currently getting a lot of work up done, between that and briella, to see what's going on. so we won't know until after that what we are going to do, whether we try again or not. for now, we are focusing all of our attention to maddox and enjoying the blessing that we have in him. we thank God for him everyday. thank you all again for your continued thoughts and prayers. we need them all. we will be heading back to uva in 2 weeks for the memorial service. it is mother's day weekend. i am thankful that i had 26 days with her as her mommy. it will be a hard but good trip. that is where i feel the closest to her, as she was never able to come home. i often feel like traveling there to just sit... and i think i might start doing that. until the next time... xoxo
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