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Ayla was born with something called Bilateral Talipes Equinovarus, commonly referred to as club foot. Bilateral meaning it is affecting both feet. It is more common to only affect one foot. It was not seen on any ultrasound I had while pregnant, so it was a complete surprise when they pulled her out during my c-section. I had a csection with her 4 weeks early because I was having contractions for weeks that finally got to 1 min apart and I was 4-5cm dilated already, but she was in a breech position so she had to be delivered by csection.
One week after birth she was to be manipulated and stretched at the ankles and casted by an orthopedic surgeon for clubfoot treatment. Each week she would get a new cast put on that would hold her foot in an over corrected position, which often times caused her a lot of pain. By 4 weeks old, we learned that her ortho was not following proper protocol for treatment which can cause more damage than good. So we switched doctors.
One month ago, she had a surgery called Achilles Tenotomy on both of her ankles. Which essentially is a surgery where they go in and cut the achilles tendon in half so that they can bend her foot upwards and allow the tendon to grow back longer in length. Immediately afterwards she's casted again. Surgery was done under general anesthesia with a breathing tube in place. They had a very difficult time getting an IV into her veins, they kept collapsing, so she was under sedation for much longer than expected due to the fact they had to keep poking her arms to get an IV to stick (about 20 attempts were made before they got one to stick into her thumb). She was very upset waking up from anesthesia and in pain. I will never forget the cries she made, unlike any cry I've heard before. Turns out she is allergic to medical adhesive (like me) so she broke out in massive hives all over her arms and face where the medical tape was at for the IV and breathing tube, little did we know that she also got hives on her legs inside of her casts because they put medical tape over her incision stitches. Unable to scratch them, like adults can, they were extremely painful for her and she was inconsolable.
On Thursday, Ayla graduated from her post-op cast and into a device known as a Ankle Foot Orthosis, this type is commonly referred to as Boots & Bar brace. (They made her pink ones, how cute!) She is supposed to wear them for 23 hours a day with 1 hour of free time for bathing (something she's never had her whole life, just sponge baths because of the casts). For 3 months this will be the schedule, then it will switch to just wearing the brace at nighttime until she is 2 years old.
Saturday during the free hour, Aylas legs starting loosing blood, swelling and turning dark blue. We went to the ER and were transferred to a bigger hospital that has a Pediatric Vascular Doctor (only a couple hospitals in the country have these types of doctors because these types of issues are very very rare for children, usually seen in grown adults & seniors). After 3 days of being in the hospital and multiple arterial and venous ultrasounds it's been determined that Ayla has something called Venous Stasis. It's a condition where the veins in her legs are so weak and unable to pump blood upwards back to her heart because for her entire life she's been in casts that have compressed the blood vessels. So now that she's cast free for the first time in her life, her veins aren't being compressed anymore and they aren't strong enough to push the blood upwards. It's something that they will have to learn to do overtime as she matures.
My 4 month old daughter has been through more in her short life than most people do in their entire lives. She is very strong and she is my little fighter and will be perfectly fine ❤️
Due to her first attempt at treatment with the old Ortho, extensive treatment with her current ortho, surgery, and hospitalization, we are up to our heads in medical bills. The first ortho, who we stopped seeing, is billing us $1300 for 3 sets of casts. Her current ortho is sweet enough to not charge us for any of her 6 casts that were done by her, she's only billing for her surgery. After insurance paid their portion for that, we owe $5000. And her hospitalization bill is $4600 after insurance. We have applied for financial assistance through the hospital but will still be left with a huge outstanding balance.
Ayla had to be added to Jake's insurance through his work because Rush University hospital and her orthopedic surgeon doesn't accept state medical insurance. We were not prepared for any of this, because we did not know that Ayla would be born with this condition. We are doing the best that we can right now. Ayla's boots and bar foot brace cost about $400 (insurance pays 100% for 1 per year, but she will need bigger ones made every 4 months until she is 2 due to growth), along with taking care of our 7 year old, our house, cars, etc., were being stretched very thin. If we don't pay the outstanding balance we owe by a certain date, she won' be able to treated until it is paid. (As with any medical institution).
If anyone can help, it would mean the entire world to us, any amount helps. We love and thank all of you! ❤️
One week after birth she was to be manipulated and stretched at the ankles and casted by an orthopedic surgeon for clubfoot treatment. Each week she would get a new cast put on that would hold her foot in an over corrected position, which often times caused her a lot of pain. By 4 weeks old, we learned that her ortho was not following proper protocol for treatment which can cause more damage than good. So we switched doctors.
One month ago, she had a surgery called Achilles Tenotomy on both of her ankles. Which essentially is a surgery where they go in and cut the achilles tendon in half so that they can bend her foot upwards and allow the tendon to grow back longer in length. Immediately afterwards she's casted again. Surgery was done under general anesthesia with a breathing tube in place. They had a very difficult time getting an IV into her veins, they kept collapsing, so she was under sedation for much longer than expected due to the fact they had to keep poking her arms to get an IV to stick (about 20 attempts were made before they got one to stick into her thumb). She was very upset waking up from anesthesia and in pain. I will never forget the cries she made, unlike any cry I've heard before. Turns out she is allergic to medical adhesive (like me) so she broke out in massive hives all over her arms and face where the medical tape was at for the IV and breathing tube, little did we know that she also got hives on her legs inside of her casts because they put medical tape over her incision stitches. Unable to scratch them, like adults can, they were extremely painful for her and she was inconsolable.
On Thursday, Ayla graduated from her post-op cast and into a device known as a Ankle Foot Orthosis, this type is commonly referred to as Boots & Bar brace. (They made her pink ones, how cute!) She is supposed to wear them for 23 hours a day with 1 hour of free time for bathing (something she's never had her whole life, just sponge baths because of the casts). For 3 months this will be the schedule, then it will switch to just wearing the brace at nighttime until she is 2 years old.
Saturday during the free hour, Aylas legs starting loosing blood, swelling and turning dark blue. We went to the ER and were transferred to a bigger hospital that has a Pediatric Vascular Doctor (only a couple hospitals in the country have these types of doctors because these types of issues are very very rare for children, usually seen in grown adults & seniors). After 3 days of being in the hospital and multiple arterial and venous ultrasounds it's been determined that Ayla has something called Venous Stasis. It's a condition where the veins in her legs are so weak and unable to pump blood upwards back to her heart because for her entire life she's been in casts that have compressed the blood vessels. So now that she's cast free for the first time in her life, her veins aren't being compressed anymore and they aren't strong enough to push the blood upwards. It's something that they will have to learn to do overtime as she matures.
My 4 month old daughter has been through more in her short life than most people do in their entire lives. She is very strong and she is my little fighter and will be perfectly fine ❤️
Due to her first attempt at treatment with the old Ortho, extensive treatment with her current ortho, surgery, and hospitalization, we are up to our heads in medical bills. The first ortho, who we stopped seeing, is billing us $1300 for 3 sets of casts. Her current ortho is sweet enough to not charge us for any of her 6 casts that were done by her, she's only billing for her surgery. After insurance paid their portion for that, we owe $5000. And her hospitalization bill is $4600 after insurance. We have applied for financial assistance through the hospital but will still be left with a huge outstanding balance.
Ayla had to be added to Jake's insurance through his work because Rush University hospital and her orthopedic surgeon doesn't accept state medical insurance. We were not prepared for any of this, because we did not know that Ayla would be born with this condition. We are doing the best that we can right now. Ayla's boots and bar foot brace cost about $400 (insurance pays 100% for 1 per year, but she will need bigger ones made every 4 months until she is 2 due to growth), along with taking care of our 7 year old, our house, cars, etc., were being stretched very thin. If we don't pay the outstanding balance we owe by a certain date, she won' be able to treated until it is paid. (As with any medical institution).
If anyone can help, it would mean the entire world to us, any amount helps. We love and thank all of you! ❤️