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Ava Lily's Spina Bifida Journey

$1,350 of $20,000 goal

Raised by 28 people in 11 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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Tomorrow is the day We get to meet our sweet girl! It’s been 33 weeks since we found out we were pregnant, 17 weeks since we got the diagnosis, and 13 weeks since fetal surgery. This chapter will close and another will open. We are delivering at 37 weeks...prayers that Ava’s surgery site is completely healed and she will not need to be in the NICU! Praying for a smooth delivery and healthy baby. Thank you ❤️
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Well the membrane separation has gotten worse at this weeks ultra sound we could see where it’s separated and the amniotic fluid has little particles of it floating around. Both my specialist here and the fetal team in Houston are good with me being at home and not having to be admitted to the hospital. Thank you Jesus! I would go crazy sitting in a hospital bed for almost a week before our csection on Monday! As of now we are praying we make it until Monday and my water doesn’t break before then! We saw my OB as well and went over our plan for delivery day. All we have left is pre op and some labs on Friday. Please continue to pray for our sweet Ava and for my nerves to be calm (I’ve never had a csection before)
We can’t wait to welcome our miracle baby into our family ❤️
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We were told that fetal surgery babies like to come between 34-36 weeks. I’m 35 and 3 today, 11 weeks since surgery! Had our weekly ultra sound today and they found a little bit of membrane separation. Doctor said it’s not of concern right now. But as it gets worse I could be admitted to the hospital until delivery. We go back on Monday. We only have 13 days until our scheduled csection and we are praying we make it till then!
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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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$1,350 of $20,000 goal

Raised by 28 people in 11 months
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