On December 29th Rich and Lindsey welcomed a baby girl, Eberley Rae, she was everything that they could have dreamed of! However within minutes of her being born the nurses knew something wasn’t right and wasn’t expected.
Eberely was born with tracheoesophageal fistula (TEF) which is a condition in which an abnormal channel, called a fistula, connects the esophagus to the trachea. She also had esophageal atresia (EA) which is where the esophagus dose not form completely. For Eberely this meet that her esophagus formed a sock and there was no way for her to eat.
Once the nurses had diagnosed her condition she was sent to the NICU where doctors where able to scheduled surgery within the first 20 hours of her precious life. During a 6 hour surgery, they were able to connect and fix the esophagus where she would be able to eat. This was a blessing as most babies had to wait months for this.
After surgery Eberly had an extremely hard time recovering. Her kidneys almost went into kidney failure, so they had to put her on life support for 2 weeks . During this time the ventilator and strong medicines kept her alive. After two weeks Rich and Lindsey were finally able to hold their baby girl♥ The next 4 weeks they spent their time in the NICU waiting to see if surgery was successful. During this time Eberely was being feed through a feeding tube while her esophagus healed. Also during this time they had to work with a developmental nurse to help teach Eberely how to eat. Since the day she was born, she had experienced negative impact from her mouth to her stomach. Having to work daily on making eating a pleasurable experience.
On January 29th they found out that surgery was successful and they were able to perform the first dilation. This is another surgery where they go in and stretch her esophagus because where the connection spot was creates scare tissues and become restricted. This is common for babies who are born with TEF/EA.
After 49 days in the NIUC they were finally able to go home! Eberely has had to have weekly dilations since being discharged, Another side effect of this condition is that Eberely has extreme acid reflux, as she does not have a the flap to keep acid from traveling up her esophagus. They have had to treat her with very expensive medicine which prevents the acid from forming. They also have to be on this because the acid was causing her to become restricted, and 2 trips to the ER because she could not eat. Additional, Eberley has to have a special formula mixed with breast milk due to a protein allergy, this formula is also very expensive.
Eberely still has the feeding tube in as to help supplement her eating. She continues to gain weight and thrive and is the true definition of what strength and bravery is. Unfortunately, with scare tissue in her esophagus it causes her to restrict and swell, meaning that she has had 10 dilations and will have to continue having them throughout her years. Rich and Lindsey are still having to go to Denver weekly for her dilations and weekly appointments with GI and kidney doctors.
This has been a long, scary and humbling journey over the last 4 months and we have realized that this journey is just starting. We know that everyone faces hardship and we are humbled to ask for help. We have found out that insurance is not covering medical and medicine expenses that we are facing.
Any, and all, donations we receive will be used to help cover medical & medicine expenses for Eberley We truly appreciate each and every one of you and truly want to thank you from the bottom of our hearts. Eberley is truly a miracle and we thank the Lord for giving us the strength and blessing us with our perfect baby!
All Our Love, Rich, Lindsey and Eberely!
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- Danielle Dahl
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Fundraising team: Team Eberely (3)
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