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Welcome to Randy's Page

Randy Noaeill

Randy Noaeill

Thank you for visiting Skyler's page to help raise awareness for CHD research.

Skyler's story...

Skyler was diagnosed in utero as having a smaller left ventricle while developing. Mom and Dad (Teri and Adam) were told that the best chance for Skyler's survival would be to give birth at UofM's C.S. Mott's Children's Hospital. On October 15, 2017 mom and dad left for Ann Arbor to prepare for the birth of Skyler the next day.

On October 16, 2017 Skyler was born and was immediately placed on the medicine that would keep her heart functioning properly. For the next week Skyler would be evaluated and monitored to determine the surgery she would need. The surgeons were not sure they would need to do the full Norwood procedure because they felt her heart may be big enough to support blood flow.

On October 23, 2017 she went in for her first surgery. Dr. Ming-Sing Si performed her surgery and decided that the best option for her was to do a "modified Norwood". Her left ventricle would continue to function but there was a hole placed between her left and right atrium to prevent backup of blood flow. The hope was that with blood continuing to flow through the left ventricle and through the mitral valve that it would grow enough to remain function-able.

For the next 6 weeks Skyler and her parents would figure out this new life. Between many different medications, spitting up every meal, the difficulty to gain weight, and the challenge to maintain a good blood oxygen saturation, it was a difficult road. We spent family time together at Thanksgiving at the hospital and we loaded up the car seat to go home on December 1, 2017.

For the next 6 months we would be in out of Bronson Kalamazoo and Mott's Children's Hospitals. We would have OT, PT, and and in-home nurse checking on Skyler every week. Inputting every feeding, daily weight checks, and daily pulse ox checks we were discovering that Skyler was not gaining weight as the doctors wanted. She was still spitting up every meal and had oral aversion. It was frustrating and difficult because we needed to gain weight, but couldn't keep food down.

However, on May 18, 2018 Skyler was able to go in for her second scheduled surgery. At this point Dr. Si determined that it would be better for her to go with the single ventricle route as the mitral valve and atrium had not grown enough to support blood flow. On May 25, 2018 she had to go back in for surgery to correct a blood flow issue that was causing her saturation levels to be dangerously low. We spent 5 weeks in the hospital this time even though we were told it would be a 2 week recovery at most.

On June 22, 2018 we were finally home! We have been home and growing every since. Skyler celebrated her 1st birthday on October 16, 2018 with friends and family and has been growing and developing. She still receives in home OT and PT and she still spits up her food quite a bit, but she is doing very well overall. She is chatty, laughs a lot, and loves her family.

For more detailed accounts of Skyler's story and her life, follow this link...

skylerannette.wordpress.com

Thank you for your help in raising awareness for Congenital Heart Defects. Your support and donation can help further develop research to give these babies the best life possible. Skyler is just one of many stories. She has a larger defect than some and a smaller defect than some as well. But CHD stories are everywhere and from Skyler and her family we want to say thank you again for your help!

Sincerely,
Skyler's Grandpa and Grandma

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