Wesley’s Fight Against HLHS Fund

My name is Kellie and I am the mom of the most wonderful little boy Wesley. At my 20 week anatomy scan we were expecting to hear joyful news as every parent hopes for, but we found out he has Hypoplastic Left Heart Syndrome.

Wesley was born via C-Section on June 11th, 2020 at Oregon Health and Science University in Portland, Oregon. A week before my scheduled induction we were informed that they could no longer perform the first major open heart surgery (the Norwood) at their hospital anymore. They told us we would be transferring up to Seattle Children’s Hospital, 3 hours away from home.

Hypoplastic Left Heart Syndrome is a congenital heart defect that affects normal blood flow through the heart because the left side of the heart did not form correctly. In a normal heart, the right side of the heart pumps oxygen-poor blood from the heart to the lungs. The left side of the heart pumps oxygen-rich blood to get to the rest of the body. With Wesley’s heart it cannot pump blood to the body properly and relies on the right side to do all of the work which makes it difficult for the oxygen-rich blood to get to the rest of the body. Wesley has received the Norwood surgery which is 1 of 3 major surgeries to attempt to help the heart function. 

Unfortunately, there is no cure for Wesley’s condition.  It’s a lifelong disease with multiple surgeries that could result in a heart transplant as well as many visits to the cardiologists. 

Due to Wesley’s heart defect I am no longer able to work. Wes needs extensive care 24/7. When he’s not inpatient in Seattle, he is at home with me. He has many medications and strict monitoring. Being out of work has put a strain on our finances. 

As a family, we hate to have to ask for help. We have wonderful family and friends to lean on in times of need. However, travel expenses and regular bills we have. We are in a situation where we must ask for help. We just want to be able to enjoy our family that’s just been created.

We know times are tough for everyone and the future is uncertain which makes this even harder. If you are unable to donate, please share this page so others may see it. Anything helps and we will be so grateful. We will appreciate the continued prayer, support and love throughout this journey. Thanks to everyone for the support. 

UPDATE: Wesley is scheduled to have a heart catheter procedure done on October 27th. He will be kept overnight for observation. We will then get one night to spend with our son before his next major open heart surgery the “Glenn” on the 29th. This is by far the hardest thing we’ve had to go through as a family. Wesley is such a fighter and the most resilient little man. Isaac will be taking off work to be with us while Wesley recovers. As always if you’re unable to donate, please share as this helps get our story out there. We are unsure of how long his recovery time will be at this time. We are hoping and praying for a quick and easy recovery. We appreciate the prayers and love and support! Thank you all! NEWEST UPDATE: Isaac, Wesley and I just got home yesterday! It’s been a long couple of weeks living in the hospital. Wesley had his second heart catheterization procedure done on October 27th which gave us and the medical team an idea on Wesley’s heart function. On October 29th he had his second major open heart surgery which went well! As he was recovering we had some issues with his lungs being “cloudy” and having to do many X-rays and physical therapy to “open” up his lungs for better oxygen saturation’s. He was having some breathing called “Schrider” needing more physical therapy for his lungs. On October 30th Wesley was able to have the NG Tube put back in to start feeds. We had to keep an eye on fluid balance throughout the process. I have an update literally for EVERY single day Wesley was inpatient. It will only let me type so much. I’m more than happy to update anybody or answer any questions anyone may have. With the holidays coming up and Isaac having to miss weeks of work we are in a bind, unfortunately. We have fallen short on our bills and medical bills which is why we are still keeping the GoFundMe going. If you’re able to donate, even if it’s small anything helps! We appreciate the outpouring love and support from everyone! All of the prayers, positive vibes, love, donations, small acts of kindness and any help or support received! If you’re unable to donate, please SHARE. We want to get Wesley’s story out there. Thank you and we love you all! As always feel free to reach out to Isaac and I for any questions.