First Birthday & Gtube surgery

"I can't eat it yet, but it sure is fun to play with!" Thank you Auntie Katie for such a beautiful cake!!

Hello again friends of Steele! The blog has been in hibernation for a bit. I am going to start it back up again throughout the summer. Steele Jacobs Thwing had his first birthday on June 16th, 2016. We celebrated at Mt.Scott Park in SE Portland with some close family and friends under the cover of a tent and a tarp. Got to love the weather in Oregon. In addition to Steele's birthday, my father, Randy Thwing, and I hosted the annual father son rib-off competition in honor of Father's Day. After several hours of deliberation and pay-offs, the winner is: Brenden Thwing!!! Nice work Dad, it is always a pleasure grilling with you.

Steele has been through a journey that most will never travel along in their first year of life. Reflecting back on all the hospitals, surgeries, moves, multiple schools for Ryleigh, and infinite decisions that have been like a choose your own cardiac adventure novel. It's hard to believe a year has passed so quickly.

Steele had his monthly routine cardiology appointment at OHSU. His weight numbers were dropping and after a throat appointment to check his vocal chords for damage, we found out that the NG Tube was causing some inflammation. The decision was now to leave the tube in or have an elective surgery for a Gastrostomy tube (also called a G-tube). The G-tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. It is unusual for kids that are the same age as Steele still have an NG tube for nutrition.

Rachel and I discussed all the options around this surgery with Steele's Cardiology team and his SLP. The SLP would not continue working on his feeding due to the throat inflammation and the cardiology team wants to see better weight improvements. We decided that the surgery is necessary for his overall health and the ability to start eating without the NG tube. To be honest, we are at the end of our rope with the constant worry of the NG tube. We have to insert the tube through his nose 3-4 times a week, which is never a pleasant experience for everyone involved. Steele's prefrontal cortex is mapping memory, the trauma of the NG tubes benefits do not outweigh the overall function for his development and growth.

Steele goes back to OHSU tomorrow morning, June 28th, for surgery. We met with the surgeon last week to go over all the procedure risks. He will be admitted in the morning and hopefully discharged two or three days later. We will get to revisit all of our friends in OHSU PICU once again.

The butterflies start to flutter in our stomachs again. This surgery is not nearly as invasive as the previous two, but there is always a high risk with anesthesia and his heart condition. We just pray for the best outcome, it's never easy to send him through those double doors on the surgery floor however.

Here we go again friends of Steele. Please send out your prayers and good thoughts for him tomorrow!

Monday morning, say bye-bye to the NG tube!

Relaxing on a Monday morning. No more tube face tomorrow!

I will do my best to keep the blog updated. Thanks for all your support and love for Steele.