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Help baby Ila

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We are searching for answers for Ila. We don’t normally ask for help, but we’ve gotten to the point where we need it. We will be traveling to Lurie Children’s Hospital in Chicago this week  to hopefully find our answers!

-Our Story-
Hi we’re the Lybarger’s and this is our daughter Ila’s story.

Ila came into this world on 8.18.2020, when she was first born we were shocked by how small she was. Our full term baby was only 6lbs 5oz, and she swam in newborn clothing. Since the very beginning we have had issues with her weight. (gaining and keeping on) At our first check up we went all the way down to 5lbs 6oz! Finally at the beginning of September we were diagnosed with failure to thrive and we we’re doing everything we knew to get her to gain weight. But none of that was working, and we found ourselves in the emergency room with a baby that had bloody stools and a severe rash. We were transferred to Saint Francis CHOI.
On that admission we learned that she had a milk protein allergy and the only formula that she could take was 50$ a can. We began to hope that our issue had been solved but we still weren’t gaining. We had to up the calorie intake of our formula. We finally gained and were able to go home!
Around that same time we noticed Ila start to show severe lethargy, sweating during eating, falling dead asleep while eating, having facial tremors, choking on her foods, and overall just not acting right.
A couple of weeks later Ila started projectile vomiting, and not waking to eat at all. So of course we landed back at Saint Francis CHOI. We were so bummed and felt like something more was wrong because she was having so many issues with no explanation. We stayed in the Hospital for 2 weeks.
During that time we discovered that she has laryngeomalacia and that she was aspirating on all of the food she was taking in. Surgery to hopefully correct the issue was done on October 9th. We also found that she has 2 heart defects plus a murmur.

But still no answers from the DR’s as to why she is having all of these symptoms that contribute to how she is gaining weight. We eventually gained weight, some of our issues were semi fixed, and returned home.

We we’re out of the hospital for less than a week before we started to have severe projectile vomiting. Ila was re admitted again for the 3rd time in 30 days. The drs are at the end of their rope and don’t have anymore suggestions except a Nissan procedure and a GTube. With the GTube she would loose all ability to eat by mouth, and it’s still not guaranteed to help.
So we are in search of answers for Ila, she is starting to miss milestones other 2 1/2 month olds are meeting, and she is miserable with stomach pain. We need a second opinion for her and our family!

-The Costs -
Travel to Hospital, Outpatient, Procedures
Daily Costs, Formula, Food, Diapers, and other expenses
Brandon unfortunately will not be able to join us in Chicago because of all of these expenses and our normal bills. So he will be working in Galesburg still.

-How You Can Help-
We are asking for donations to help offset the costs that will accumulate for us while we our on our journey to find answers and have a healthy baby!
Donate

Donations 

  • Anonymous
    • $50
    • 4 yrs
  • Todd Bair
    • $100
    • 4 yrs
  • Anonymous
    • $20
    • 4 yrs
  • Anonymous
    • $25
    • 4 yrs
  • Dawn Tatro
    • $25
    • 4 yrs
Donate

Organizer

Ann Lybarger
Organizer
Galesburg, IL

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