UPDATE******4/28/13********Aubree is currently recovering from her second VEPTR procedure at the children's hospital in Philadelphia. Her first birthday is quickly approaching and will unfortunately be spent in the hospital as she recovers from this life saving surgery. Please consider donating to help cover some of the medical expenses the Shaw family has incurred over the course of the past year.
Below are updates from Aubree's mom. Aubree has been transported from Arkansas Children's Hospital to Childrens Hospital of Philadelphia. Aubree had a very difficult transport. This family is in need of prayers. As many of you can imagine the expense of traveling on 2 ambulances and a medical jet to get Aubree to Philadelphia is overwhelming. Please consider donating to help show this family your support.
UPDATE *****4/3/13*******Aubree is stabilizing more the longer we are at CHOP. There are stills some concerns from a heart standpoint about what happened to her during the transport, so they have done another echo, an EKG, and a couple repeat BNPs to try and get to the bottom of everything. She is finally waking up some and has needed some rescues to help keep her comfortably sedated. This is an improvement from the listless baby from yesterday afternoon. Aubree has run a bit of a fever today, but no other major changes. Her pulmonologist here came by to see her and is pleased that she seems to have turned the corner from yesterday. Again, thank you all
for the prayers and please continue praying for Aubree
UPDATE ****** 4/2/13 ****** Today has been extremely rough on our poor baby. She was in respiratory failure from the 3 hours spent on the transport vent that did not support her well at all. By the time we got to CHOP, she was frigid, had no capillary reflex, completely unresponsive to any kind of touch or stimulation, her blood gasses were completely terrible, her white blood cell count was high, her blood pressures were extremely soft, and her heart rate was high. Things were so hectic with so many people trying to help get our girl stable. Our girl was rapidly spiraling downward and almost didn't make make it. Praise the Lord for His healing power and that the transport was not any longer than it was. We honestly don't think she could have lasted much longer than she did before getting to CHOP. Because of all of the trauma and stress from transport, her heart has been affected, and we are looking into that. We are praying that it is just acute. Her blood gasses have finally stabilized after a couple doses of bicarbonate, and she is on dopamine to help her blood pressure. She also got quite a bit of fluid to help her blood pressure as well. They have started her on a 48 hour regimen of 2 broad spectrum antibiotics because of the high white blood cell count as we await the cultures they took this afternoon. Thank you all for praying for our Aubree and please continue praying for her healing.
UPDATE****** 3/21/13******* Aubree has had a rough couple of days. she developed fever and the level of CO2 in her blood was at extremely high levels. Aubree was air lifted from NorthwestArkansas to Arkansas Children's Hospital where she still maintained dangerously high CO2 levels and was intubated to help aide her in reducing the amount of gasses in her blood. She is currently fighting the sedation meds and running a high fever. The doctors are working to determine the cause of the fever. Aubree's second surgery date is quickly approaching and the family could use our prayers and any monetary support.
Aubree Shaw was born on May 3,2012. After a month long stay in the NICU and extensive testing; Aubree was diagnosed with Jeunes Syndrome. Jeunes Syndrome in an extremely rare genetic condition in which the rib cage does not grow at an appropriate pace to allow the lungs the space they need to meet Aubree's oxygen needs. Aubree has perfectly healthy lungs but her "container" for them is simply too small. Aubree's parents Audra and Derrick made the decision to take their daughter to Philadelphia to receive a traumatic but life saving surgery. A device called a VEPTR replaced Aubree's natural ribs to allow her space to breathe. The initial device was placed on one side of her chest on January 2, 2013 and the other side is scheduled to be completed on April 9th, 2013. Aubree will then have surgeries to expand the device approximately every 6 to 8 months until she is fully grown around the age of 15. More can be read about Jeune's Syndrome here and here. Aubree's parents have simply asked for prayers but any monetary donation would help relieve some of the burden that has been placed on them due to medical bills, travel expenses, and daily living expenses. You can follow and catch up on Aubree's story through her mother Audra Shaw's blog at www.raisingaubree.blogspot.com
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