Help for Baby Ava and Family

$11,615 of $30,000 goal

Raised by 163 people in 33 months
James Crowley
on behalf of Kaylie Wiener
 CLOQUET, MN
In September 2015 Kaylie and Jesse received the news that they were finally going to become parents and they couldn't be happier, this was a day they had been praying for. The first few months were full of excitement and planning for their new arrival, Ava Grace, in May 2016.



At their 20 week ultrasound some abnormalities were noted including a 2 vessel cord and a baby that was much smaller than she should have been at this time. Follow up a week later confirmed that their little girl was only in the 3rd percentile for growth and weight and was diagnosed with symmetrical Intrauterine Growth Restriction (IUGR). IUGR is a condition that prevents a growing fetus from getting the oxygen and nutrients needed to grow properly. After birth the newborns growth and development will depend on the severity and cause of the IUGR.  IUGR babies are monitored for growth, development, and blood flow through the umbilical cord frequently throughout pregnancy to determine if they are doing well enough to remain in utero or if they need to be delivered early.
    

At 29 weeks during another of their growth scans they were told that another abnormality had been noted over the last few weeks of ultrasounds. No stomach bubble had been seen on ultrasound throughout their frequent monitoring. Ava's ultrasounds had been viewed by and discussed with doctors down at Children's hospital in Minneapolis during their monthly conference and they were all in agreement that Ava also has an Esophageal atresia (EA). This means that her esophagus and stomach do not connect as they are supposed to. There are several different types and severities of atresia, all of which require surgical intervention after birth. It is impossible to tell which type of atresia Ava has until birth or how complex her surgery may be. All of which has the potential to be complicated by her IUGR.  Kaylie was also diagnosed with polyhydramnios at this time which is common with babies who have EA as the baby is unable to swallow and absorb amniotic fluid as they are supposed to and the fluid level begins to rise causing the mothers stomach to swell larger than it should and can cause frequent contractions, difficulty breathing, pain and may require an amniocentesis to lower the fluid level at some point.  At this time ultrasounds will continue twice per week for monitoring.
    

Kaylie and Jesse were sent down to the cities to meet with the neonatologists and surgeons who would be caring for Ava once born. At this appointment they did another ultrasound and had a cardiologist present as her heart was showing some slight abnormalities as well including a thicker and abnormally shaped left ventricle and a dilated aortic arch - which the doctors did not seem concerned about at this time as blood flow through the heart seems normal right now, though they will do an echo shortly after birth to get a better idea of what is going on.
    

The doctors will want Kaylie to relocate to the cities at 35 weeks gestation to ensure she is in the cities when Ava will need to be delivered and can be monitored as closely as possible. She will be out of work and does not qualify for disability to cover this time or qualify for FMLA. They will need to pay monthly to continue their insurance through a cobra plan while Kaylie is out of work.  Jesse will have to remain in Cloquet to continue working to pay their monthly bills and will be driving to the cities on the weekends and for the doctors appointments he is able.  
    

At this time it is impossible to tell how soon Ava will need to be born or how long she will need to remain in the NICU down in the cities.  What they do know is they are very lucky to live only 2 hours away from such an amazing hospital where their little girl will be able to have the surgery she needs after birth to help her live a normal life. They have had amazing support from friends and family to help with the emotional stress and now we can try and do something to help with the financial burden of relocation, travel expenses, surgery, the NICU stay and all of the other expenses that are sure to come up during this time.

Jesse and Kaylie, understandably so, are struggling to ask for help.  However, this challenge they are facing deserves some help in any way possible.  If not financially please send thoughts and prayers to all involved.  Any donation is very much appreciated.
$10 pays for a meal for Kaylie in the cities.
$50 pays for the gas Jesse will use driving to and from the cities.
Or anything else helps pay the tremendous and unknown financial challenges that lay ahead.

What are we asking you to help support?
Travel expenses
Jesse will continue to work and travel weekly to support Kaylie and Ava Grace.
Kaylie has been required to relocate to the twin cities to be closely monitored by the experts at Children’s and to continue her weekly specialty care, office visits, and imaging to monitor Ava Grace and her care during the final stages of  pregnancy
Weekends with the family in the cities
All will include gas, food, parking, and etc.

Medical bills
Additional doctor and specialty care not covered by insurance or care that has been declared out of network.
Unexpected nonpaid leave from work.
No FMLA or disability is available to Kaylie for her time off of work. Plus the cost of cobra coverage during this time off of work.

Other expenses
Jesse and Kaylie are fortunate to have some assistance from the hospital for lodging and the Ronald McDonald house post delivery, but there will be many other expenses associated with being away from home and having a newborn that will require surgery and an extended NICU stay.
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Update 10
Posted by Kaylie Wiener
29 months ago
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Out of surgery which took just over 4 hours. Ava tolerated everything well. They discovered that she has another congenital abnormality when doing the bronch prior to intubating her - she has a bronchus suis. Tracheal bronchus (bronchus suis) is a rare and unusual congenital anomaly in which the right upper lobe has its origin in the trachea rather than the distal carina....Interesting...They went in through her old incision and mobilized her lower esophagus but were unable to mobilize her upper esophagus. This is good as there is less of a chance of a leak and bad as there is a higher risk for issues with reflux. They were able to connect the two ends via a primary repair....thank goodness!!! Now the problem with reflux in EA babies is that they could possibly be unable to eat orally and would need a tube placed in their jejunum (bypassing her stomach completely) and would eventually need to have a nissen fundoplication done. In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated around the lower end of the esophagus and stitched into place, reinforcing the closing function of the lower esophageal sphincter. So the potential for another surgery. We have no idea how things will play out now and all depends on Ms Avabelle. She is currently intubated, in fact she had to be reintubated in the NICU as they accidentally pulled out her breathing tube during her transfer...When she woke up from surgery she was in a lot of pain and very agitated. She required extra morphine and Ativan to get her comfortable. The plan is to do a swallow study in one week to determine if she has any leaks. Some leaks eventually heal on their own, others require surgical intervention. She had a chest tube in that will be removed once she is confirmed to be leak free.

Mommy and Daddy had a very long day and are exhausted. please send them your love, prayers, and positive thoughts!!!
Post surgery Avabelle
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Update 9
Posted by Kaylie Wiener
29 months ago
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Surgery is two days away. We have no idea if they will be able to do a primary repair and be done that day or if Ava will need to go through the Foker process to stretch her esophagus enough to attach it to her stomach. If she needs to be stretched she will spend 1-2 weeks intubated and paralyzed while tension is applied daily to sutures attached to her esophagus and wired out through her back. Once the esophagus is stretched enough they will go back in and attach the two ends.

We have no idea how long Ava will remain hospitalized after this next procedure.

It will be so hard to see her take so many steps back after all she has gone through to get where she is today, but we know this step is crucial to get her home.....

Please keep Ava in your thoughts and prayers

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Update 8
Posted by Kaylie Wiener
31 months ago
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Ava's heart surgery is complete but will remains in the cardiac ICU for observation until the cardiac surgeon feels comfortable moving her back to the NICU. The next month and a half will be Ava trying to get off of respiratory support and gaining weight for her next big surgery to repair her atresia. She will need to remain hospitalized until this time as she cannot swallow her secretions and ends up aspirating them into her lungs if she does not have that suction catheter to help pull secretions out of her esophageal pouch.
The surgery to correct Ava's esophageal atresia will take place in mid August giving her esophagus a full three months to grow after birth. Ava had a long gap atresia which is more difficult to repair because of the distance between her esophageal pouch and stomach. There is a possibility that she will need multiple surgeries to close the gap if she hasn't grown enough to do it in one. After her repair she will need expensive PT and OT at the hospital to help her catch up physically and also learn how to eat so that hopefully she can one day have the Gtube removed. It is unknown how long she will need to remain hospitalized in the cities after surgery.

Continued time away from home means continuing expenses for Ava and her family.
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Update 7
Posted by Kaylie Wiener
31 months ago
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Surgery #3 in the books - Ava's shunt (used to redirect blood flow away from her heart during yesterday's surgery) has been removed and her chest has been closed!!!


Oxygen sats are perfect for the first time since birth and heart rate is starting to come back down to the 130s-150s it was early on rather than the 150s-200s that it has been these past few weeks. It's very obvious that her lungs and heart are able to function more normally and not under all of the extra stress caused by her AP window and narrow aorta!!!


She is still having blood pressure issues and was not voiding much overnight. She's getting Lasix and Diuride (both diuretics) to help her body get rid of the extra fluid built up in her system which should help the edema, blood pressure, and increase her urine output. They also had to increase her pain medication (Continuous Fentanyl drip + blouses and Tylenol suppositories) and give her bumps of Versed to help keep her comfortable... She burns through the pain medication pretty quickly.

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Read a Previous Update
Joanne Schwarm
33 months ago
1
1

Prayers going - just a thought - lay hands on Ava Grace and pray - will pray daily and may God Bless you all 3 and keep you strong for this journey..

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Marie Butenhoff
33 months ago
1
1

Jessie/Kaylie and Ava Grace have been on our prayer list for several weeks already and will continue.

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Linda A. Button Bailey
33 months ago
1
1

Praying for Ava and her family!

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$11,615 of $30,000 goal

Raised by 163 people in 33 months
Created April 26, 2016
James Crowley
on behalf of Kaylie Wiener
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$100
Anonymous
10 months ago
1
1
$50
Jennifer Iverson
23 months ago

That SMILE! From broken heart, to heart breaker... !? Love you

TF
$200
The Miranda Family
24 months ago

Praying for Ava and her entire family. God Bless.

PR
$100
Pam Rodgers
25 months ago

Kaylie, Merry Christmas to you and your family. So happy to see Ava doing so well! You and Jesse are amazing -

$100
Anonymous
26 months ago
JI
$50
jennifer iverson
27 months ago
$250
Elizabeth Johnson
28 months ago
TF
$25
Toni Frazier
28 months ago

I've been following Ava's story through my sister-in-laws facebook posts. She is such a strong little fighter. Keep fighting little one.

ST
$10
Stephanie Turk
29 months ago
SU
$100
Sara Undem
29 months ago

What a sweet little girl, she's beautiful!

Joanne Schwarm
33 months ago
1
1

Prayers going - just a thought - lay hands on Ava Grace and pray - will pray daily and may God Bless you all 3 and keep you strong for this journey..

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Marie Butenhoff
33 months ago
1
1

Jessie/Kaylie and Ava Grace have been on our prayer list for several weeks already and will continue.

+ Read More
Linda A. Button Bailey
33 months ago
1
1

Praying for Ava and her family!

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