July 27, 2015

Steele Hanging Out on Monday Morning

This past week went fairly well. He is doing well without the use of the oxygen tanks, which has made his care much easier than before. The new challenge is getting him increase the daily feeding goals. Currently, he will take about 1/2 of the bottle every 3 hours, the remaining milk & medications are given to him through the NG tube. Rachel and I had a difficult weekend with the feeding schedule. We would get through the initial bottle phase and then switch over to the tube and he began spitting up after nearly each feeding, which dropped his overall intake and weight. We were concerned about his weight loss and holding down medications. OHSU gave us a list of "Red Flags" to watch for, one flag is a weight loss of .3kg in 24 hrs. We kept a close eye on him and tried to slow down the tube intake, and he seems more stable today. It is stressful when you are trying your best to meet hourly nutrition goals and you fail. We are going to change the type of dietary supplement that is added to the milk, nearly all his tube feeds seem to cause stomach issues. We are consulting with the nutrition team at OHSU to find a solution. We really would be happy if he did not have to have the NG tube in for the duration of 6 months. I mentioned in the last post, that if he can reach higher bottle intake goals on a regular basis, the tube will be removed.

This week is free of appointments, finally!

                                             Ryleigh is learning the ropes of child care:

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.

July 10-13

Discharged!!

What a handful of days it has been. Apparently Rachel and I were doing "A" work at the hospital, and they kept their word on discharging Steele on Friday evening around 7:20. There was a solid stream of people from 7am-7pm about medical equipment, lab results, immunizations, more lab results, equipment training, and finally the discharge papers. I honestly did not know if he was coming home with us until we loaded him and his oxygen tank into the car and drove away from OHSU. It was a feeling of relief and anxiety that I have not experienced until now. I had to make 3 trips to my car with all his new "toys" from the hospital. The day was a giant blur, part of the discharge protocol require the parent(s) to care for the patient for a minimum of 24 hours. Steele's feeding schedule is every three hours. You will be up and up and up again. I really felt like a patient and a parent while this transition happened. I am so thankful that we were put to the test. There is a lot that happens at night that I did not know.

After two hours of sleep, we were awakened by Steele's cry over the last blood endocrine stress test lab. Unfortunately, cardio patients with his condition tend to have blood vessels that are not easy to find with a needle. Two nurses and the Doctor on call that morning could not get the vein that they wanted. I am glad they stopped after 20 minutes of hearing Steele's cries. Granted, this child cries when you change his diaper, but the sound of stress does not leave a good taste in your mouth. Now, it was up to our Case Manager to handle the rest of the "discharge train" formalities. Rachel and I stuck close to his side, while learning the ropes of his care. I remember Ryleigh was on the same feeding schedule, but with much less medication and no oxygen assistance. It was determined that Steele would be going home with oxygen.

Hours passed and all the sudden it was 5pm, Rachel and I were finally ready to have our last meal in a hospital room with our new son. We had a celebatory H20 clink of our waterbottles and digested our food while wating for the final paperwork. The nurse came in and began unraviling the black and white to Rachel while I did the 6pm feed and tranistion to Steele's car seat. Steele was required to sit while buckled up and oxygen tank flowing in his car seat for 90 minutes while mainting a blood sat rate of 75% or higher the entire time. He passed with flying colors. I had the safety staff inspect my jingus climber dude seat belt job in the Subaru. The safety inspector laughed and commented something like "....what were your goals here?" She helped me correct my brilliant design and signed off on the inspection.

Time to go up and get Steele, Rachel and all the final belonings and get out of OHSU. Here are the pics:

Rachel & Steele just moments before the final dischage

I never though they were going to let us out of there, but they did!

We arrived home, got settled and began to move him into his new room. Rachel and I were exhausted. We continued the feeding cycle of every 3 hours. I was scheduled to attend a CrossFit competiton on Saturday morning all day. Rachel handleled it like a champ, while I was getting my butt kicked in SW Beaverton. I was so happy when I got home and finally spent some time with Steele and Rachel.

I have forgotten so quickly how these first few weeks of caring for a baby can turn you into a zombie. I began the task of finding all the baby gear that has been buried in our basement for the last 4.5 years. Clean it, air it out and safety checks. Still don't know where that damn Lamb Swing went?? 

Now, I am on a plane to Columbia, South Carolina to spend a couple of days with Rachel's side of our family. The puzzle pieces are starting to make that final journey to the masterpiece we call life. Thanks again for all the support, food, and hugs that have been shared throughout the past three weeks.

Steele will be 1 month old on July 14, 2015. He sure has had one heck of a ride thus far.

July 8 & 9, 2015

I have not posted until today because my hands have literally "been full" for the last 48 hours. The last two days have been really intense. The parenting goals put before us have a high demand of hands on work and learning. Doernbecher gave Rachel and I a 3 inch binder full of new tasks for us to get discharged. The announcement came yesterday that Steele would try and be discharged on Friday, July 10th! This timeline is pretty rigorous with all the training that Rachel and I are taking on to ensure his care and transition at home. We were handed a sheet with a flow chart on it that has been labeled as the "Discharge Train". On this train, there are about 40 performance tasks that Rachel and I have to demonstrate to the nursing staff before we can escort him home. It feels more like a train wreck at the moment, Here's the shortlist:

1. Placing a Nasogastric Tube into his stomach. (I needed to see a Cardiologist after that one, whew!!)
2. Feeding and delivery of medications through the tube
3. Recording his feedings, weight and Oxygen Saturation numbers every 3 hours
4. CPR
5. Identify all his medications and when they are required to be administered
6. Identify all the visual and physical "Red Flags"
7. Car seat oxygen test. Steele has to be belted into the seat while on a monitor in the hospital before the car ride home.
8. Try and rest in between about 30 other tasks that I can't remember at this moment.

The correct name for this period between the first and second surgery is called "Interstage". His heart and vascular system are really fragile and he will need a lot of recording and reporting performed by Rachel and I. Parents and Doctors communicate on a weekly basis that will show progress or he will have to come back for additional care. It's all very overwhelming at this point, but we can handle it. I'm a little nervous about leaving for the week, we had not planned on Steele making such a quick recovery and discharge. He's a rockstar and is doing very well.

I want to give a BIG shout out to Jocelyn Gary, Renee Enna and Lauren Kelly for all the painting, cleaning and organization of our SE home. These wonderful ladies have taken a ton of stress off of me by all the hard work. The nursery looks fantastic!

July 7--Evening

Big day today. Moved out of the PICU into the Intermediate Care Unit or called the "Floor" by all staffing. All I can says is "WOW!". We have our son Steele and he is in fine condition. He was up and viewing the world with his blue eyes. I could feel his energy today, especially as he pooped in his diaper! He is the baby that was born on June 16th, a young boy with a new heart, ready for life. The current unit that he was moved to is so much less stress than the PICU and there is a lighter amount of overall stress in communication with our medical staffing. Not to lessen the amount of care that he is receiving, but it feels more like home is coming soon.

The same requirements are in place for all safety protocols, but Rachel and I are now more in charge of his care and bed time assistance. Rachel was visited by over 10 medical departments from Speech to Respiratory. We still have much to learn, but you can tell we are getting closer to that discharge door.

I think Steele indicated that he has had enough of the hospital in this photo:

We love you bud, I am so proud how far you have come in just one week! 

July 6, 2015--Week 3 at OHSU

Rachel headed into the PICU this morning and she was told that Steele would be transitioning to the "Floor" in the next 24-48 hours. This is a big step for both the parents and child. It means that Steele will be discharged from the PICU and moved to the unit where the babies that are not critical will stay until his final discharge from the hospital. Rachel and I will receive the training for his transition home throughout the entire week. The lines in the neck and radial artery on his right arm are being removed today as well, two less machines. Steele is getting nutrition from an IV and through a nasogastric tube with breast milk. His feeding is going very well, we are shooting for a goal of 15ml of milk every 2 hours. Once Steele's tummy can handle the digestion of 60ml/day we are looking very good to come home granted there are no other breathing or cardiovascular issues. His CPAP is still pushing air through his nose, but they are using a smaller device to deliver the air. You could tell that he was somewhat uncomfortable with the "SCUBA" mask the last couple of days, so I'm really happy that is gone for now. All his vitals look great and I think we are looking good today. Rachel is getting as much snuggle time as possible, while I am preparing the final touches on his room in our SE Portland house.

I shouldn't be anxious about his recovery going so smoothly, but my guard is always up about how quickly things can change with babies. Although he is not so little for his age, the medical team assures Rachel and I that we are very fortunate to have a term baby that was in great shape minus the HLHS issue. I keep telling myself, one thing at a time, one step at time....

I will be leaving a week from today to fetch Ryleigh in South Carolina and bring her back to Portland. I cannot believe that nearly a month has passed before us.

July 5th

I hope everyone and their pet survived the evening. Thanks very much to Andy and Renee Enna for hosting an awesome 4th! These two have been so supportive over the years, we love you both so much!!

Okay, back to the updates on Baby Steele. We arrived at the PICU and were so surprised to see how many of the the machines and medicines have been taken away. The extubation was a success yesterday which happened in the evening while Rachel was by his side and holding his hand. He was put on Continuous Positive Air Pressure or CPAP through his nose after removing the tubes. The chest tubes that were allowing fluids to drain from his abdomen were removed as well. His skin coloring looks great and we you can finally see his whole face again. All of his blood gas reports this morning indicate that he is trying to balance his metabolism. All in all, very good report this morning. We have been told that the main goals for today are to keep up the breathing and allow his lungs to adjust accordingly. Steele was taken off all the pain medications and a blood thinner called Heparin. He has really made some huge strides in his recovery thus far. There is still the buzzing and pumping noises in the background, but it is so much quieter in his "room" today.

We missed his awake time this morning, but I'm sure that he will rise again. When I get to see his eyes open, he has the look in there that says "I got this Dad...." I will keep on saying this: "He is a fighter!" This whole experience has me thinking about the meaning of strength and how the human body is so capable of healing itself. I am truly awe struck at this point.

We have been told that we can hold him again, hopefully my turn this time.

Rachel and I sure miss Ryleigh, great to talk with her last night via skype. Only 7 days till we reunite in South Carolina and make the trip back to Portland. I cannot thank Miriam and Rob McAtee enough for all the surrogate parenting that has been going on in the last 3 weeks. We owe you guys big time for taking in our daughter in your home. Rachel and I are so lucky to have such a wonderful and loving family.

July 3--Evening

We got the news that Rachel could hold Steele this evening after switching and consolidating his lines. It has been 5 days since we were able to hold him, what a great ending to a long week. The tubes in his nose will most likely come off tomorrow.

I mentioned earlier about the machines that are aiding in his recovery:

It's amazing that all this will eventually be removed.

July 3, 2015

After a morning of consumer chaos for Independence Day, I finally made it in to visit with Steele. His chest closure went really well. The blood pressure is the main issue after closing the chest, so his night medical team kept a close eye on his HR, Oxygen and BP. A constant flux of all his systems are now being tested to see how the heart will adjust to a trial run without some assistance from the machines. His bedside still looks like something out of a sci-fi movie with all the alarms, flickering lights, digital readouts and tubing that he is connected to. I really respect what all the medical staffing has done to keep him alive and healthy, everyone in the PICU is so professional and always on their top game. Rachel and I can ask about anything related to his medical condition that is going on and they will find the answer.

Steele is beginning to switch over to his newly designed heart, we are so relieved he is fighting to take on all these challenges that are happening to him. I'm so proud of him for being so brave and strong, I had my doubts about how all this would settle out after seeing him post-surgery on Monday. I could not bring myself to take any photographs of him post-surgery because that image is permanently burned in my memory. As a parent with a child that has HLHS, you cannot prepare yourself for what an heart open surgery has done to your baby. I found it comforting to try and focus on the fact that Steele needed this surgery to continue living a healthy and fruitful life. Without it, well, I don't even want to go there.

I have a huge smile on my face today, for this first time in many months this whole feeling of medical turmoil may be finally reaching it's apex and now it's time to down climb that big mountain. I know Steele is going to come home with us very soon! It's a perfect way to celebrate the Fourth of July!

The next steps are to extubate the ventilator tubes and see how he will do with breathing on his own. It is not uncommon for these patients to be on assisted oxygen for a period of time once discharged from the hospital. One thing at a time, one step at a time, that is my new mantra for getting through the doors and going home with him.

July 2, 2015

When we left the PICU last night, Steele's medical team were worried about his body temperature being a bit low. Apparently when babies have a low temp, an infection may be present. It couldn't be the air conditioning or lack of blankets of course? A sample of blood and urine were taken as a precautionary measure before sewing his chest up. The plan was to move forward if no infection was present. The cultures from fluid draws take about 48 hours.

When we arrived this morning, he was scheduled to have the chest surgery later this afternoon. Good news. Steele was put on a warmer and his temps look great so far today.

When the chest incision is sewn up, it will be done in a couple of stages before completing the final closure. The surgeon or assisting surgeon from Monday's operation will perform the procedure. He does not have to be moved out of his room, they will ask us to leave and turn the room into a mini-OR.

There are 5 other children getting a Norwood surgery in the next two weeks up here. Rachel and I are baffled about the increase in these patients. Our medical team indicated that Dr.Shen and Dr.Ashook are the very best and most sought after HLHS surgeons in our area. There are patients from all over the country in here at the moment. We feel blessed to have access to such wonderful specialists and care for Steele.

If you are unfamiliar with the HLHS and the 3 surgeries, this link was really helpful in explaining what Steele will go through in the next 3 years:

http://www.cdc.gov/ncbddd/heartdefects/hlhs.html

July 1, 2015

Today was a great day! Rachel arrived at the PICU around noon and heard the news that Steele's chest incision would be closed sometime in the afternoon tomorrow! This is the first of many steps to get him home:

1. Drain fluids from surgery--His kidney's will do most of the work and they are!
2. Close chest incision
3. Get off of oxygen ventilator
4. Move out of PICU
5. Begin eating milk again
6. Training on how to transition home
7. Safety check and discharge

His skin color looks so much better today as well. He is really doing a great job with the recovery so far. Initially, the surgeons indicated that Friday would be a landmark day for the chest closure, he is a day ahead of schedule!!

He is doing so great, we are so relieved after two really hard days of unknown stability and recovery. Way to go Steele!

I will be mailing our family a photo book with this cover in the next few days