UPDATE  Nov 14, 2021

The results of Orion’s last EKG and echocardiogram show that his heart and heart function look great.  Orion is now off of his fat free formula, and is meeting his milestones, slowly but surely.  He has started eating pureed fruits and vegetables.

Orion meets with his therapists every two weeks.  They are helping him develop his eating skills and are focusing on his motor skills.  He is rolling over, sitting up (with assistance), and loves playing with his toys with his big brother.  His nutritionist continues to monitor his weight.  

His local cardiology team has determined that he will likely need his second surgery between 3-4 years old.

We would like to say thank you to everyone for their continued love, support, prayers, and donations.

Love,

Orion & family

UPDATE: Aug 21, 2021 - 5:00 pm

Orion is in a holding pattern until morning at this point.  He is in critical condition, but doctors remain confident that they will be able to drain fluid. Praying they don’t have to go back in for ‘adjustments’.  Orion and his parents remain strong.  We are all hopeful.  

UPDATE:  Aug 21, 2021 - Noon

Added a drain tube on his right side and has since been intubated.  Are watching fluid buildup on his left side.  

UPDATE:  Aug 21, 2021 - 7:30 am

Orion has had some complications in his recovery.Everything is alright. But orion has had some more work of breathing and has had to be put on highflo oxygen.. They think he has some fluid buildup around his heart and lungs. It is not a rare or life threatening complication but Orion is pretty uncomfortable

UPDATE:  Aug 20, 2021

Orion’s open heart surgery went as planned, no complications.  He will be in ICU for a spell at Seattle Children’s.  We are so very thankful.  Continued prayers appreciated.   ❤️

We are asking for prayers and/or support for our son Zak and his family. Zak and Cat learned in late 2020 that their unborn son would be born with a heart defect. They worked closely with their medical team at Uof W and Seattle Children’s Hospital for prenatal care.

Cat gave birth to Orion O’Dell Bliss at U of W on April 23, 2021. Orion, weighing 6 lb, 6 oz, was immediately transferred to Seattle Children’s Hospital for further workup and evaluation.

Orion was born with congenital heart defects known as Tricuspid (TA) and Transposition of the Great Arteries (TGA) –collectively Hypoplastic Right Heart Syndrome. TA It is a birth defect of the tricuspid valve, which is the valve that controls blood flow from the right atrium (upper right chamber of the heart) to the right ventricle (lower right chamber of the heart). Tricuspid atresia occurs when this valve doesn’t form at all, and no blood can go from the right atrium through the right ventricle to the lungs for oxygen.

Blood must use other routes to bypass the unformed tricuspid valve. Babies born with tricuspid atresia can also have an Atrial Septal Defect (which Orion has), which is a hole between the right and left atria. This defect allows oxygen-rich blood to mix with oxygen-poor blood, so that oxygen-rich blood has a way to get pumped to the rest of the body.

Transposition of the Great Arteries (TGA) is where the arteries from the heart are reversed. The main pulmonary artery, which normally carries oxygen-poor blood from the right side of the heart to the lungs, now arises from the left side and carries oxygen-rich blood returning from the lungs back to the lungs. The aorta, which normally carries blood from the left side of the heart to the body, now arises from the right side and carries oxygen-poor blood back out to the body. With TA and TGA, blood is able to get to the lungs because the pulmonary artery arises from the developed left ventricle. However, blood cannot get out to the body because the aorta arises from the poorly formed right ventricle and is small.

It is so very complicated... For more detailed information about this condition, please go to cdc.gov and search for Congenital Heart Defects (CHD) and Glenn Procedure.

At four months old, Orion will undergo his first open heart surgery, August 20th, at Seattle Children’s Hospital. He has already had a couple of procedures to prepare him for the Glenn Procedure. It is expected that he will remain in the hospital for a couple of weeks for recovery.

Cat had to quit her job in retail at 36 weeks into her pregnancy, temporarily relocate to Seattle for monitoring prior to giving birth, and was then there for a couple of months while Orion was continually monitored. Zak would travel back and forth to Seattle during this time, in order to remain working, and maintain their apartment in the TriCities. They have been back together as a family in the TriCities for a couple of months now, performing remote monitoring of Orion’s health on a daily basis, getting to regularly scheduled appointments, etc. Cat now works as a full-time mother. With reduced income, increased need for reliable transportation, Zak’s periodic absences from his work, and additional costs related to Orion’s care, financial support would be very helpful and appreciated.

Thank you.