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Ava Lily's Spina Bifida Journey

$1,350 of $20,000 goal

Raised by 28 people in 2 months
Hello, we are Ibolya and Noah and we have two daughters, Adrianna 11 and Alexa 21 months. Our third baby girl, Ava is currently 23 weeks in utero.  We are seeking donations to help us with travel and hotel expenses as well as medical costs. At our 20 week ultra sound we received the devastating news that Ava has Spina Bifida. She has the most severe form  myelomeningocele and a chiari II malformation which is causing hydrocephalus. The myelomeningocele is an opening on her lower back that exposes the spinal nerves. This in turn causes the Chiari II which is where the spinal chord is pulling the brain down at the back of the skull which blocks fluid from draining properly. Because of the brain being pulled down it causes hydrocephalus which is a fluid build up in her brain. After talking with doctor's here we were referred to Houston to Children's Hermann Memorial Hospital to meet with doctors there.  After extensive tests and meeting with numerous doctors surgeons and specialists over 3 days we were informed that mom and baby are great candidates  for in utero surgery.  Babies with Spina Bifida used to only have the option to have a closure surgery after they were born and live with the effects of the Spina Bifida. In 2003 they started a trial where they did the surgery in utero before 25 weeks to repiar the Spine. They have found that by repairing the defect early they can prevent further damage to the nerves. Only 3 places in the US are preforming this type of surgery. They have had amazing success in reducing the hydrocephalus and the damage to the nerves by closing the area early. We will need to travel from Tulsa, Oklahoma to Houston Texas in the next few weeks for the surgery. It will be an enormous strain on our family both emotionally and financially but we feel strongly that God is leading us to give Ava every chance to be as healthy as possible. If we were to have to turn the surgery down we would still need to travel to Houston for the delivery as she will need to have the opening in her spine repaired after she is born since we do not have the medical expertise with Spina Bifida here in Oklahoma. We appreciate any support that could be given and ask for as many prayers for Ava and Mom as possible. We will update as we take this journey.

Update: Surgery is scheduled for Tuesday December 12th
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No surprise here...she’s already got a head full of hair like the other two did! Everything checked out good today. Her hydrocephalus is still low and stable. She was in the perfect position to get a good look at her back and her repair site looks great. Fluid is normal, and no membrane separation around my incision. Thank you Jesus! One week at a time. ❤️
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Sweet baby Ava 4 weeks post surgery. She is doing wonderful! Chiari malformation reversed!!! Thank you Jesus!!! She still has mild hydrocephalus but her condition is stable. We are hoping to see improvements there as well in the weeks to come! Thank you all for your continued prayers ❤️
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Our csection has been scheduled for March 12th at 10:00 am. Alexa and Ava’s birthdays will be about 3 weeks apart. Alexa will be 2 years old. She has a baby doll obsession and we have no doubt she will be super excited about baby sister. Adrianna is 11 1/2 now and I’m sure she will be a pro at taking care of baby sis especially after helping so much with Alexa. I’ve got some great girls y’all! Can’t wait to complete our little family of 5! Praying we have an uneventful few months until we get to 37 weeks. The last few ultra sounds Ava has been practicing breathing movements which is great we were told. Keep praying
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Hey guys! Its been 3 weeks since surgery. Our second post op ultra sound showed some minor improvements in Ava’s head! Praise the Lord! We are hoping and praying she continues to improve and be perfectly healthy by the time she’s born. We still have a long way to go, trying to take it day by day, week by week. Hoping to make it until 37 weeks scheduled csection to meet our little princess. Bed rest has definitely been harder then I thought, Not picking Alexa up and tending to her like I normally would is difficult for me. She has been a good cuddle buddy and pretty calm around my belly so I haven’t worried too much about her jumping on me. Adrianna has been pretty good at helping out too! Noah has catered to my every little need. Blessed to have such a sweet and caring family. Thank you all for the continued prayers and support. We appreciate each and every one of you!!! ❤️
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$1,350 of $20,000 goal

Raised by 28 people in 2 months
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