July 22, 2015

It's been a while since the last post, I apologize for not getting the daily entries in. There will most likely be weekly entries from now on. The Thwing's are much busier than ever at home.

I travelled to South Carolina successfully, minus a cancelled flight out of Charlotte. Thanks to Rob McAtee for making the drive from Lake Murray to pick me up at the airport. As soon as we arrived back at Lake Murray, Ryleigh bounded out of one of Villas and into my arms screaming "Daddy, Daddy!!" I broke down in tears and was so thankful to finally see her again. The anticipation on the plane ride kept me awake most of the trip. We immediately went to have lunch with the family and begin to catch up on the latest from Rachel and Steele.

It did not take long to adjust to "Lake Life". Boiled peanuts, a beer and one boat ride later, I was securely adjusted with my host family and the best that South Carolina has to offer in the context of nutrition and an awesome family. There is nothing better than Southern food, relaxation, cool vibes and a lovely family. The Sanchez's, McAtee's and Jacobs' families are truly wonderful hosts, thank you to everyone for the excellent meals, progressive cocktails. and just all around great memories that are shared every year. I love you all.

Rachel and I were in contact via phone for most of the trip. Steele was taken to his first Pediatric appointment which was somewhat of a fiasco because of the 3 hour time commitment and a trip back to the house while my sister Katie assisted Rachel in my absence. Thank you Katie, you are the best! The main concern tracking Steele's weight and O2 saturation levels. He is weighed and his oxygen levels are measured everyday for specific targets set forth by the cardiology team and nutrition specialists at OHSU. These are tracked everyday along with his feeds that are broken down into two sets of numbers. Bottle intake vs. NG tube intake. We then call or email the numbers off to the medical team at OHSU every Tuesday for their tracking. Nearly every week there will either be an appointment with the Pediatrician or the Cardiologists at OHSU.

When Ryleigh and I finally arrived back in PDX last Saturday, we were greeted by Rachel and Mona bear. Ryleigh ran excitedly into the house and went right up to Steele and said "He's soooo cute!" It was a priceless moment for everyone.

Yesterday, June 21, we were allowed to take Steele off of the oxygen as needed. This was HUGE for two reasons. 1) It gave us more mobility with him and 2) He can begin to breathe without 100% O2 support. This just makes life a lot easier for us all. He still has the NG tube for feeding puroposes, but we have about a month before it will be determined that he will keep it in until the next surgery. Our goal is to get those bottle feeding numbers up so the tube can be removed completely. He is trying hard, but will not currently finish all 75 mL of food.

Steele is adjusting very well to life at home. We have a 3 hour feeding schedule, which is becoming easier as we get our routine in order. I still have a long list of daily tasks before cruising altitude is reached. Ryleigh is doing well around her new brother. She is being parented on her new set of boundaries and is actually really helpful with care. I'm still in shock that she has a little brother to look after.

A huge thanks to all our families and friends that are supporting and helping us out day in and day out. Also, want to thank everyone that is following this and leaving such kind thoughts for us as we navigate these uncharted seas.