We have detected that JavaScript is currently disabled. CaringBridge is best viewed with JavaScript enabled.

Lila’s Story

Site created on July 15, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Lila Rey Stauffer officially joined our family on July 10, 2019. She was 6lbs 7oz and 15 inches long. She was born at IU Methodist Hospital via csection due to the known health issues she had. After being stabilized she was ambulance transported to Riley Hospital NICU. We are blessed by the miracle of her life.
Lila truly is a miracle as at her 13 week ultrasound we were told she wouldn't be born alive and if she would be she would die soon after birth as she was going to be "incompatible with life" due to the number of anomalies she had. She had a large part of her liver outside her abdominal wall, known as a giant omphalocele. She didn't have a left radial bone. She had a cystic hygroma on the back of her neck. From these findings they assumed she had a genetic or chromosomal disorder that was severe. The devastating news hit us like a rock and we prayed for God's will and grace in our little ones life.
At our 20 week ultrasound we found we were having a girl! We were also told her main organs looked like they were functioning and we were told we could be referred to Riley for further workup. We did an amniocentesis and those results came back negative for any chromosomal or genetic disorder. The doctor was surprised.
At 28 weeks we went to Riley for the first time and had a full workup of an MRI, echocardiogram, and extensive ultrasound. We then met with a panel of doctors to discuss findings. We were told they were 80% sure she could probably live a fairly normal life. Her liver was 53% outside her abdomen, which was better than what we thought. They did find the cystic hygroma to be gone but instead her neck was pulled back and to the left with no clear reason why. Her large intestine was not in the proper position but We were told this should not cause any issues. We needed to have a scheduled c-section because of the liver being on the outside. We left that appointment feeling hopeful for the future of our daughter.
Close monitoring of our sweet girl continued to take place over the next months as we awaited her birth.
She was born on the scheduled c-section date although we had a scare that brought our family down to Indianapolis to reside until she was born. Becca was having contractions daily, frequent, regular and painful at times starting 2 weeks prior to our scheduled date.
We have been so blessed by being able to stay at Ronald Mcdonald house and by all the love and support over this last 9 months.

Newest Update

Journal entry by Rebecca Stauffer — 7 hours ago

Lila needs your prayers. Still no improvement but holding steady. She has been unable to move her tongue since surgery and swallow. I’m hoping it’s just from swelling in her neck/airway region. We did have neurology and neurosurgery see her and they are thinking it’s less likely to be due to true nerve damage but more due to nerve stretching or swelling.

Please pray with me that this gets better.

Also she has been having significant low oxygen saturations when getting upset. She remains on ventilator settings. Please pray she can get back to her normal breathing soon.

She has been feeling frustrated a lot today. Unable to talk, hard for her to move, pain and so uncomfortable in the vest. As you can guess, me and Nate feel so awful for putting her through all this with not much benefit to it all. If we had only known the surgery wouldn’t help her in the long run.

Read More of the journal titled "April 27, 2024"

Patients and caregivers love hearing from you; add a comment to show your support.

Help Lila Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Lila's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Requests

Go to Ways to Help