Naomi Hope Burns

First post: Jun 27, 2020 Latest post: Dec 22, 2020
WELCOME from Cerena and Phillis, Naomi's Grandmothers, who will be monitoring this site for Katie and Nolan.  If you joined us, THANK YOU SO MUCH- for supporting, encouraging and loving our children.   In this forum, we can keep family and friends updated in one place, share information,  our faith - and most  of all - our Hope! Its a place to pray and cry and laugh and be joyful that our God is mighty and awesome and good...  all the time.  The slogan of these uncertain times could not be more appropriate here...  and that is...we are truly in this together, and life is so much sweeter with friends and family- like  you- coming alongside us! We love you and appreciate your compassion!  ❤ 🙏 ❤ Shortly after Katie and Nolan attended Naomi’s 20 week checkup -where the gender was revealed- the Burn’s received the call that Naomi had serious issues. I cant even put into words the array of emotions we all went through as a family. Our faith has never been so strongly tested. But I am convinced when we step out in faith, that is where miracles hang out. That is where we want to hang out. Its where we invite  you to hang out with us. To find inspiration, to cling to God's promises and offer our love to the Burns family.  So  without further adiu... we share Naomi's deets! NAOMI'S CONDITION: ·     Heterotaxy (there are 2 types; she has right atrial isomerism) - multiple heart defects; and her liver is in the middle instead of the right. She is also missing her spleen, but no malrotation of the intestines.  Also, instead of having a right side and a left side of her heart, its more like  her right side is mirrored on the left. ·       Dextrocardia -her heart points toward the right side of her chest instead of the left side. ·       Complete Atrioventricular Canal (AVC) Defect with a common leaky valve.  This means that there is no wall separating the right and left side of the heart and only one valve between the top and bottom instead of two.  The one (common) valve is leaky because it is letting blood flow back towards the atriums.   ***This is the main issue and will need a fix, otherwise she may need a transplant sooner than later. ·       Right aortic arch - her aorta arises from the right side of her heart instead of the left. ·       Pulmonary artesia - her pulmonary artery is blocked ·       She has good sized ventricle chambers but her aorta and pulmonary artery are switched (AO is supposed to be connected to the left but hers is connected to the right, and the PA is supposed to be connected to the right but hers is connected to the left), and her AO is so far to the right that they cannot make a patch to separate the right and left ventricles. ·       Double outlet right ventricle - AO usually connects to the left ventricle pulling oxygen rich blood only, but hers is pulling mixed, oxygen-poor blood. ·       Her pulmonary veins meet at a convergence where is blood is collecting before going into the atrium.  This is okay for now, but they will monitor to make sure the blood is getting to the top chambers of the heart without blockage. ·       Single ventricle: means the heart only does one function rather than two.  Hers will only pump blood to the body but will not pump blood to her lungs.  (Blood from her body will passively flow to her lungs.) ·       Bilateral Super Vena Cava - she has two SVCs instead of one. LABOR AND DELIVERY: Katie’s due date was originally July 13th, but due to Naomi’s heart team wishing to be prepared and present,  (obvi) Katie is being induced at the San Francisco’s Children’s Hospital on Monday, July 6th at 8 pm.  We expect Naomi to arrive by the 7th or 8th.  Once Naomi is born, an initial assessment will be done, where they will put lines in her umbilical cord to draw blood and monitor her blood pressure, give medication to keep her ductus arteriortis open, and provide nutrition.  Then she will go to the NICU.   In the NICU, they will do x-rays, ultrasounds, ecocardiograms, and other tests to monitor her oxygen levels, blood pressure, how exactly the heart moves the blood, and what kind of support she needs, which can change from day to day.  All doctors and nurses have a big conference every Tuesday morning where they will decide what kind of procedure to do for Naomi. The hope is that they will operate when she is very stable and her pulmonary pressures have leveled out, although they will operate if she is in a critical state and cannot wait. NAOMI'S 1ST PROCEDURE: The purpose will be to get blood to her lungs. There are three options: 1.    Stent that goes through her leg to her heart (not an open heart surgery) 2.    A shunt that mimics the ductus arteriosis 3.    A conduit that mimics the PA   We will update you on the date of Naomi’s heart surgery and will give you follow up information then. We Serve a MIGHTY GOD who can do MIGHTY wonders. Thank you for your prayers, 🙏 and Thank you for visiting!!! 💗  

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