Nora

Nora ~ Full Trisomy 13 ~ Born:  February 9, 2013

A little bit about us... My husband, Jerry, and I have been married for two years and Nora is our first baby. I'm 35 (the dreaded advanced maternal age) and Jerry is. 37. We live in Atlanta but met while living in NYC - I was there for 7 years and Jerry for 3. I am in healthcare IT sales and Jerry is a recent law school grad (late in life career change) and working at a bankruptcy firm. As I mentioned, we declined all prenatal screening so both Nora's sex and her condition were a surprise.

A bit about Nora...as we all can agree, our kiddos are amazing and she continues to defy the odds everyday. She was sent home on day 10 of life with hospice care and we started the "death watch" so to speak. Well,

Nora had other plans and just continues to kick but. She has an asd and vsd and both are showing very promising signs of closing. Her murmurs are now totally undetectable and her pediatrician (with cardiology agreement) has been trying to get me to titrate her lasix dose DOWN but I'm too chicken. She's on room air and has been since day one. We had some serious scares with apnea in the beginning but she has now gone a couple MONTHS without an episode. Her only true outward manifestation is anopthalmia though we are hopeful that she can sense light and dark out of a teeny tiny left orbit. She currently has an NG tube though we are working very hard to get her a g tube or button placed. She feeds by bottle but is very inconsistent although I am very hopeful that removal of that annoying tube will improve that. She was recently dx with a bowel malrotation so we are in the process of finding a surgeon who will correct and place a button in the same procedure.

She was originally dx with holoprolosephaly in the nicu yet the study was technically inconclusive since she moved (day 3? of life). We are also hopeful that we can get this test repeated while she is under general for the gut surgery. In all, Nora is doing fantastic. She weighed 12 lbs 6 oz at her peds appt last week, up from 5-4 on her day of discharge. Se is happy, active, sweet and beautiful. I have attached some pics.  

God bless you all and I hope to meet some of you at the SOFT conference in July!

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa

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