Support Baby Fifer's Uphill Battle
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UPDATE #3
Baby Jayda is a happy, spunky baby girl! Just look at that smile!
Jayda is approaching 5 months and has been working very hard to keep up with her developmental milestones. At her last neurologist appointment her neurologist told Seth and Kayla that she looks like your typical 4 month old! This was a surprise to the neurologist and she was very excited to see how Jayda is progressing. She stated that the next few months are crucial in Jayda's physical development. This being said, Kayla will be leaving her job to stay home with Jayda. This decision did not come easy, but it was decided it was best for Jayda at this time. With Kayla staying home, she can ensure Jayda will be working on meeting all her milestones. Mom will NOT let her be lazy .
Her 4 month check ups down at Riley went very well. She had a repeat sleep study and they are able to drop her oxygen from 1/2 liter to 1/4 liter! Jayda has to be monitored 4x/day and if her O2 levels stay above 97 then she can go to down to using the oxygen for feedings and sleeping ONLY!!! This is a huge step!!
Here is Jayda leaving her Riley appointments. That face shows just how proud she is!!
Jayda is going on 2 months without the use of the Gtube for feedings. This means she is completely oral and is crushing her bottles and beefing up nicely She has to be completely oral for 5-6 months before they will remove the Gtube, but we are on the right track!
Overall, Jayda continues to surprise her doctors! We cannot thank you enough for the continued support and prayers! We feel them and see them working within Jay every single day .
UPDATE #2
The Fifer's have finally made it home! They were able to bring Jayda home on April 2nd. While bringing their sweet daughter home was always the goal, it was not an easy task.
Before being discharged from Riley, the doctors decided Jayda needed to have a GI tube instead of an NG tube. This decision was made because she still does not have the coordination to bottle feed, though Seth and Kayla still get to practice that with her. Jayda underwent surgery on March 31st to have the GI port placed. Kayla and Seth then had to learn how to use it to feed their baby girl. They also had to learn about Jayda's oxygen needs and monitor and her heart rate monitor before leaving for home.
At home, their house was prepped with an oxygen machine and tanks. Jayda will remain on 1/2L of oxygen and her oxygen level and heart rate rate will also be constantly monitored.
They are excited to be back in the comfort of their own home with their fur baby, Rocko. Their families are also very excited to get to visit with mom and dad and meet baby Jayda.
We continue to ask for positive thoughts, prayers, and support for the family of 3.
UPDATE
Baby Girl Fifer has made her appearance!! Mom and Dad have named her Jayda Lynn, and she is so adorable! Don't you think!?!
After Kayla was induced midday on March 17th, Jayda made her appearance on March 18th at 8:32am weighing 7 lbs even and 19 3/4in long! Mom and baby are doing well.
Jayda was able to spend the first 24 hours at Methodist in the NICU, so Seth and Kayla could visit with her. She was transferred to Riley’s NICU on March 19th. Kayla was also discharged on the 19th, and both parents are able to be with her.
She has had a very busy week with repeat testing and imaging, but at this time she is crushing it. She had an MRI, which showed a change in diagnosis. The Dandy Walker diagnosis has been relabeled as Joubert's Syndrome. This syndrome is even more rare, but Jayda's physical and intellectual outlook are relatively the same. Her kidney's were monitored and seem to be functioning at this time. She passed her eye exam, so that is not a concern right now. She has also undergone a sleep study to see why she is having bouts of not breathing. Currently she is still on oxygen, and, she has a nasal cannula in to help with occasional breathing issues as well. A speech therapist is helping with feedings as she is struggling due to a lack of coordination. An NG tube is in place to aid in getting her the nutrients that she needs. They're hoping to do a swallow test the 29th or 30th. Jayda did fail her hearing test in one ear, but it is a basic test and will just need a follow up.
They are expecting to be at Riley’s for at least another week to try to figure out her breathing and feeding battles. Kayla and Seth will be doing training to be able to care for Jayda at home. They will get training on how to use a feeding tube, oxygen, the monitoring system as the ultimate goal is to be able to bring her home safely!
Kayla and Seth welcome continued thoughts, prayers, and support!
ORIGINAL STORY
The Beginning
Kayla and Seth Fifer are a young, married couple expecting their first child. Kayla informed Seth of their exciting news in July of 2020. She could not contain her excitement when she sent me her announcement picture the same day. She knew I would be thrilled to be Aunt Amber for the first time. Their news brought such happiness to both sides of the family, as we had been waiting for this moment to come! Attending doctor’s appointments, picking nursery themes, and deciding on the perfect baby girl name were all taking place in preparation for parenthood.
Everything seemed to be going as planned until Kayla’s midwife noticed some fluid in baby girl’s skull while viewing the results of the mid pregnancy ultrasound. This was the beginning of the long road ahead.
The Climb
Kayla and Seth did not know it at the time, but baby girl’s uphill battle was just beginning. Because of the ultrasound findings, Kayla was referred to a specialist to monitor the baby’s development and the amount of fluid present in her skull. The specialist informed Kayla and Seth that their baby may need medical intervention, by way of a shunt, soon after delivery. Her specialist referred them to Riley Hospital for Children in Indianapolis for a second opinion.
Getting Steeper
On January 21st, 2021 Kayla and Seth’s world came crashing down. After a long day of testing and appointments, they received the news every parent fears; something was wrong with their little girl.
- After a fetal MRI, the doctors found several brain disorders that are very rare on their own, let alone all in one patient.
- With the combination of Dandy-Walker Syndrome, Polymicrogyria, and Schizencephaly the experts are left with more questions than answers.
- A preschool cognitive development may be attainable; however, the neurologist’s ultimate goal would be for her to walk and talk independently.
- She may not be capable of eating or breathing on her own.
- Seizures are common with these different disorders.
- Doctors cannot do anything surgically to improve or repair baby’s brain malformations.
-Kidney Dysplasia is also present in both of baby girl’s kidneys, which will eventually lead to dialysis and even a need for transplant.
You can imagine how overwhelming all of this must be for these young parents. There isn’t anything we can do to make this better or lessen their pain; however, we can help them move forward, one uphill step at a time. Through this Go Fund Me, I would like to help ease the financial stress that accompanies this devastating news.
Kayla and Seth are facing unforeseen doctor’s appointments, testing, and special care needs. These unexpected circumstances come with unexpected costs. Though we are not certain what specific treatment and care needs Baby Fifer will need, this fund will help pay for traveling expenses, doctor’s appointments, hospital bills, and tentative care needs. Due to the care of baby girl, the family may need additional financial support after returning home, as it is likely both parents will not be able to remain employed full time.
We Need You
If you would like to help Kayla and Seth at this time, please make a monetary contribution. We appreciate any support you can give during these tough times. Anything will make a tremendous difference as they continue the battle for their little girl.
Baby Jayda is a happy, spunky baby girl! Just look at that smile!
Jayda is approaching 5 months and has been working very hard to keep up with her developmental milestones. At her last neurologist appointment her neurologist told Seth and Kayla that she looks like your typical 4 month old! This was a surprise to the neurologist and she was very excited to see how Jayda is progressing. She stated that the next few months are crucial in Jayda's physical development. This being said, Kayla will be leaving her job to stay home with Jayda. This decision did not come easy, but it was decided it was best for Jayda at this time. With Kayla staying home, she can ensure Jayda will be working on meeting all her milestones. Mom will NOT let her be lazy .
Her 4 month check ups down at Riley went very well. She had a repeat sleep study and they are able to drop her oxygen from 1/2 liter to 1/4 liter! Jayda has to be monitored 4x/day and if her O2 levels stay above 97 then she can go to down to using the oxygen for feedings and sleeping ONLY!!! This is a huge step!!
Here is Jayda leaving her Riley appointments. That face shows just how proud she is!! Jayda is going on 2 months without the use of the Gtube for feedings. This means she is completely oral and is crushing her bottles and beefing up nicely She has to be completely oral for 5-6 months before they will remove the Gtube, but we are on the right track!
Overall, Jayda continues to surprise her doctors! We cannot thank you enough for the continued support and prayers! We feel them and see them working within Jay every single day .
UPDATE #2
The Fifer's have finally made it home! They were able to bring Jayda home on April 2nd. While bringing their sweet daughter home was always the goal, it was not an easy task.
Before being discharged from Riley, the doctors decided Jayda needed to have a GI tube instead of an NG tube. This decision was made because she still does not have the coordination to bottle feed, though Seth and Kayla still get to practice that with her. Jayda underwent surgery on March 31st to have the GI port placed. Kayla and Seth then had to learn how to use it to feed their baby girl. They also had to learn about Jayda's oxygen needs and monitor and her heart rate monitor before leaving for home.
At home, their house was prepped with an oxygen machine and tanks. Jayda will remain on 1/2L of oxygen and her oxygen level and heart rate rate will also be constantly monitored.
They are excited to be back in the comfort of their own home with their fur baby, Rocko. Their families are also very excited to get to visit with mom and dad and meet baby Jayda.
We continue to ask for positive thoughts, prayers, and support for the family of 3.
UPDATE
Baby Girl Fifer has made her appearance!! Mom and Dad have named her Jayda Lynn, and she is so adorable! Don't you think!?!
After Kayla was induced midday on March 17th, Jayda made her appearance on March 18th at 8:32am weighing 7 lbs even and 19 3/4in long! Mom and baby are doing well.
Jayda was able to spend the first 24 hours at Methodist in the NICU, so Seth and Kayla could visit with her. She was transferred to Riley’s NICU on March 19th. Kayla was also discharged on the 19th, and both parents are able to be with her.
She has had a very busy week with repeat testing and imaging, but at this time she is crushing it. She had an MRI, which showed a change in diagnosis. The Dandy Walker diagnosis has been relabeled as Joubert's Syndrome. This syndrome is even more rare, but Jayda's physical and intellectual outlook are relatively the same. Her kidney's were monitored and seem to be functioning at this time. She passed her eye exam, so that is not a concern right now. She has also undergone a sleep study to see why she is having bouts of not breathing. Currently she is still on oxygen, and, she has a nasal cannula in to help with occasional breathing issues as well. A speech therapist is helping with feedings as she is struggling due to a lack of coordination. An NG tube is in place to aid in getting her the nutrients that she needs. They're hoping to do a swallow test the 29th or 30th. Jayda did fail her hearing test in one ear, but it is a basic test and will just need a follow up.
They are expecting to be at Riley’s for at least another week to try to figure out her breathing and feeding battles. Kayla and Seth will be doing training to be able to care for Jayda at home. They will get training on how to use a feeding tube, oxygen, the monitoring system as the ultimate goal is to be able to bring her home safely!
Kayla and Seth welcome continued thoughts, prayers, and support!
ORIGINAL STORY
The Beginning
Kayla and Seth Fifer are a young, married couple expecting their first child. Kayla informed Seth of their exciting news in July of 2020. She could not contain her excitement when she sent me her announcement picture the same day. She knew I would be thrilled to be Aunt Amber for the first time. Their news brought such happiness to both sides of the family, as we had been waiting for this moment to come! Attending doctor’s appointments, picking nursery themes, and deciding on the perfect baby girl name were all taking place in preparation for parenthood.
Everything seemed to be going as planned until Kayla’s midwife noticed some fluid in baby girl’s skull while viewing the results of the mid pregnancy ultrasound. This was the beginning of the long road ahead.
The Climb
Kayla and Seth did not know it at the time, but baby girl’s uphill battle was just beginning. Because of the ultrasound findings, Kayla was referred to a specialist to monitor the baby’s development and the amount of fluid present in her skull. The specialist informed Kayla and Seth that their baby may need medical intervention, by way of a shunt, soon after delivery. Her specialist referred them to Riley Hospital for Children in Indianapolis for a second opinion.
Getting Steeper
On January 21st, 2021 Kayla and Seth’s world came crashing down. After a long day of testing and appointments, they received the news every parent fears; something was wrong with their little girl.
- After a fetal MRI, the doctors found several brain disorders that are very rare on their own, let alone all in one patient.
- With the combination of Dandy-Walker Syndrome, Polymicrogyria, and Schizencephaly the experts are left with more questions than answers.
- A preschool cognitive development may be attainable; however, the neurologist’s ultimate goal would be for her to walk and talk independently.
- She may not be capable of eating or breathing on her own.
- Seizures are common with these different disorders.
- Doctors cannot do anything surgically to improve or repair baby’s brain malformations.
-Kidney Dysplasia is also present in both of baby girl’s kidneys, which will eventually lead to dialysis and even a need for transplant.
You can imagine how overwhelming all of this must be for these young parents. There isn’t anything we can do to make this better or lessen their pain; however, we can help them move forward, one uphill step at a time. Through this Go Fund Me, I would like to help ease the financial stress that accompanies this devastating news.
Kayla and Seth are facing unforeseen doctor’s appointments, testing, and special care needs. These unexpected circumstances come with unexpected costs. Though we are not certain what specific treatment and care needs Baby Fifer will need, this fund will help pay for traveling expenses, doctor’s appointments, hospital bills, and tentative care needs. Due to the care of baby girl, the family may need additional financial support after returning home, as it is likely both parents will not be able to remain employed full time.
We Need You
If you would like to help Kayla and Seth at this time, please make a monetary contribution. We appreciate any support you can give during these tough times. Anything will make a tremendous difference as they continue the battle for their little girl.
Organizer and beneficiary
Amber Reidenbach
Organizer
Corunna, IN
Kayla Fifer
Beneficiary
