Ailyn’s Army

Thank you for being part of Ailyn's Army!! (You can also find updates at www.facebook.com/Ailynsheartjourney )

 Ailyn Diane Rogers was diagnosed at 24 weeks of gestation with critical congenital heart defects. Ailyn was born on September 20th, 2018 (6 weeks early due to her moms severe preeclampsia) weighing 4lbs 15.5 oz and 18 inches long. They performed an echocardiogram at just an hour old and confirmed that Ailyn has hypoplastic Aortic valve, hypoplastic Aortic arch and a VSD (meaning she has essentially no aorta or aortic valve and a hole in her heart). When Ailyn was first diagnosed with these CHD’s , the plan was to have her “Norwood” open heart surgery done at 6-10 days old and then have the rest of her heart repaired at 4-6 months old. These would both be serious open heart surgeries that would require her to go on heart and lung bypass machines. However, Ailyn was born 6 weeks early and was too small to have surgery safely. The doctors new plan was to put bands on her pulmonary artery via open heart surgery at 7 days old and have Ailyn on prostaglandins to keep her ductis arteriosis (a duct that carries blood from the heart to the body while they are in utero since the y don’t need lungs) open instead of it closing 24 hours after birth and that would work as her aorta. Ailyn then spent 2 months growing so that she could reach the surgeons goal weight of 3kg's to have her total repair surgery. The doctors decided to perform the Yasui procedure on Ailyn instead of their initial plan of doing a Norwood surgery. The Yasui procedure is a newer heart surgery in which they would use Ailyns pulmonary artery to create her new aorta, then use a donor valve to create a pumonary valve and artery to go to her lungs. 

Ailyn had her 2nd and largest Open Heart Surgery on 11/12/18. When they looked at her heart, they realized she had less of an aorta than initally thought. They knew that they would have to stop her heart and lungs by putting her on bypass, however, they also needed to cool down her body, put her into a hypothermic state and only send blood to her brain to keep her alive, while they used donor tissue to create an aorta. They essentially rebuilt her heart. 

Since her surgery on 11/12/18 Ailyn has had many complications. Her largest complication as been suffering from rhythm issues. Her heart has gone into atrial tachycardia and atrial flutter. This is where her atrium is beating very rapidly and at a different pace than her ventricles. Due to the severe stress is causes the heart, the heart can crash when put into these rhythms. Ailyn has had to have her heart stopped and shocked to get her out of atrial flutter and has also been put on many medications to keep this under control. 

Ailyn has also developed 2 blood infections while hospitalized. One of the infections was caused by the PICC line that she had running through her vein into her heart since birth (they took that PICC out and started a new one). And the other infection was due to her getting the rhinovirus, then getting a UTI from the rhinovirus. The UTI was caused by E. Coli bacteria and it entered her blood. 

Ailyn remains in the hospital (as of 1/22) so they can monitor her rhythm issues and hopefully get her to start gaining weight. She will require another surgery this hospitization to place a G tube in so she can be fed through the G-tube. 

After she is sent home, she will require special care and will have to have more open heart surgeries performed to upsize the donor valve and conduit she has in her heart. 

This go fund me page was created to help Ailyn's family lessen the burden of the tremendous financial stress they have been put under so that they could focus on helping Ailyn heal. Ailyns mom was forced to temporarily close her business so that she could be with Ailyn while she was hospitalized. Mom stayed with Ailyn and at the Ronald Mcdonald House across the street from Childrens Hospital of WI while Ailyns dad worked and took care of their 4 other children back at home in Albany WI. Their overwhelming medical bills, cost of traveling back and forth to Milwaukee, and supporting their family with only one income has been incredibly difficult. Any little bit helps, as they navigate this life long battle with a baby born with a critical Congenital Heart Defect.

2022 Update: Ailyn just turned 4 years old. She has undergone her 3rd open heart surgery and is currently medically stable. She remains incredibly medically complex due to her chromosomal deletions and unbalanced translocations. She LOVES spending time with her OLDER brothers and sisters (she is not a fan of her younger brother). She loves music, swimming, Elmo and Mickey!

Ailyn attends physical, occupational and speech therapy in addition to all of the specialist appointments at Childrens Hospital of WI. She is G Tube Dependent and can currently only communicate with emotions. We are hoping to qualify for a special tablet in which she will hopefully be able to learn to communicate with. Ailyn currently is unable to attend daycare due to her medical, developmental and other special needs. In turn, mom and dad have had to modify work schedules and work less hours to take care of Ailyn and get her to therapies and doctor appointments.