Appointment at PCMC and Some Pictures

Today we headed down to Salt Lake for Brewer’s first follow up appointment at Primary Children’s Medical Center. Brewer woke us up at 6:15 and we got started getting ready to go. Phil packed the car, while I fed Brewer and we were off. My Dad stayed in Driggs with Boyd and Remy. It was so nice not to have to worry about potty breaks in the car or hauling Boyd all around the hospital. I know he had much more fun with my Dad than he would have had with us (8 hours in the car is a lot for a three year old).

Brew did pretty good on the way down. He was happy (slept) for two of the four hours. When we got to the hospital we checked in and they sent us straight to get his chest x-ray done. He looked so tiny on the table. Of course he cried while they stretched his legs and held his body down so he wouldn’t move. But they said it was actually better for them to cry during the x-ray because it fills his lungs with air and they get a better picture. Phil didn’t like watching. It was yet another time that Brewer had to be slightly uncomfortable. While I felt the same way, I was a little more intrigued by the whole thing and snapped a picture. I thought Brewer might like to look at it when he’s older. They did two x-rays and both turned out well the first time. Phil’s Mom came up to the hospital for the appointment and showed up just after they had finished the x-ray. We all headed back to cardiology for our actual appointment.

The nurse came in and weighed him and measured him. We were nervous to see how much weight he had gained because of all his issues with eating and being grumpy during the week. Next she did the echocardiogram (EKG). I didn’t have a clue of how they did it and it was fascinating. They put a bunch of pads/sensors all over his chest and front and hooked them all up to a computer. Then all she had to do was push a button to run the test. The nurse was amazing. Some people are suited so well for their professions and she was one. She talked to Brewer the whole time in a quiet and soothing voice. He was so interested in her and hardly cried the entire time. She took his vitals next and then finally removed the rest of the sensors. That was the worst part and made him pretty mad. But it was also time for him to eat so we fed him and he calmed right down.

Sonia, one of the nurse practitioners, came in next and reviewed everything with us. She was very pleased with Brewer, especially his weight gain. She said that he can stay on breast milk and that there is a possibility of nursing. She also gave us the go ahead for bathing him since his incisions look so good. We are excited to be able to give him a bath, but mostly because Boyd has been looking forward to bath baby Brew for months now.

 Sonia, and all the other NP’s, are amazing. We’ve talked to them so many times this past week and we are so grateful for their help.

Next, the cardiologist, Dr. Rachel __?__ (can’t remember her last name) but we loved her, came in to have one final look at Brewer. She too was thrilled with how well he was doing. She gave us the go ahead to nurse and told us we could take him of Lasix. Yay, one medication down! They also helped us figure out our appointment schedule between coming down to Salt Lake and meeting with Dr. Williams (a senior cardiologist at PCMC) in Pocatello. They really have gone out of their way to make sure things are covered and arranged for us. We are so grateful! Primary’s is really like no other hospital. We are so grateful that Brewer is being treated there.

When the appointment was over, we headed out to the cafeteria to meet Andrew and Jenna. They came all the way up to Salt Lake to us and baby Brew. They are SO good to us and have helped us so much. They brought us lunch and we were able to catch up a bit and give them the latest on Brewer. While we were in the cafeteria we ran into Dr. Burch, Brewer’s surgeon. He took a few minutes out of his, I’m sure crazy, day to check on Brewer. Michael, one of our favorite nurses in the CICU, also happened to come in the cafeteria when we were there. We were so happy to see him and he was happy that Brewer was doing so well. We’ll hope to have him as Brewer’s nurse again for a day or two for his second surgery. We couldn’t stay too long at the hospital, even though it feels a little bit like home. We had another 4-hour car drive ahead of us.

After talking to my Mom the other night, things sort of shifted into the right perspective for me again. I feel so bad now for not being able to recognize the many many blessings that are continuing to come. We still have so much support. Not just our family and the hundreds of people praying for us, but now that we’re home we have our ward family too. We’ve had meals brought in, our house cleaned, laundry folded, and dishes washed. Through this service we can feel our Heavenly Father’s love. I can also feel his love through Boyd and the sweet prayers he says for Brewer. He always prayers that Brewer can get better and grow strong and healthy. The other day I was having a hard time getting a burp out of Brewer and I asked Boyd to say a prayer to Heavenly Father to help him burp, thinking the faith of a child was stronger than mine. He did so happily. I can’t remember what happened. But a few days later I was expressing frustration again that I couldn’t get a burp to Phil. Boyd stopped playing and said; “I’ll say a prayer for Brewer.” And he did. It was so sweet.  I love my boys. I’ve heard people say how amazing it is that your love can grow as you have more and more kids--that there is just more room in your heart to love. That has certainly been true for me. My heart has grown and I love the love I feel.

My love for Phil has also grown. It has undoubtedly grown over the 6 years we have been married, but my love has exponentially grown for him over the past few weeks. I can’t look at him without smiling and feeling a deep admiration. He has handled this so well and has been my rock. He has dealt with the financial side, insurance, hospital calls, keeping his business running, and all of my emotions so well. He’s amazing and I’m so lucky to be sealed to him. I’m so excited that he’s the man I get to spend eternity with. 

Just before Brew's chest x-ray

Boyd's primary teachers sent him a package! It was so cute and thoughtful. It had a card that said they missed him and all the kids from his class had signed it. Then there was candy, a new toy car, and sticker activity book. He was so thrilled about everything! It was so thoughtful. We love our ward and Boyd's primary teachers, Sister Brenda (McCashland) and Sister (Lauralee) Blake.

No more feeding tube!!

We're all loving the tube-less face!

We're trying to teach him that he likes to be swaddled. But for now he puts up a pretty good effort to escape. Sometimes if he's grunting a bunch and having a hard time napping I'll just go pull his arms out. Sometimes it helps and he goes back to sleep, but sometimes it just makes things worse.

My Mom sent a bouncer seat with my Dad. It has been so helpful and Brewer really seems to enjoy it. When he's happy he'll just hang out in it and look around. But it's super helpful when he's fussy or if we need to extend his nap a bit and keep him sleeping.

These next two pictures make me so happy and so sad at the same time. It's our amazing friends Carl and Audrey. Saying they have been helpful is an understatement. They have done so much for us. From keeping Remy the entire time we were in Utah, to cleaning our house (multiple times), snow blowing our driveway while we were away, coming down to Utah to visit Brewer in the hospital, Carl hanging out with Phil when he was home and feeling empty (missing his family) during the week until very late hours and much much more! We have been so blessed to get to know them in the time we've lived in Driggs! And now they are leaving for a little while for a new job opportunity. They came over the night before Carl was leaving to hang out for a bit. Sadly, since we can't have young kids in our home right now, so they left their kids in the car and put a movie on for them! It wasn't a big deal for Carl and Audrey to leave their kids in the car. They understand our situation and are so happy to help any way they can. I was glad they were able to come over and hold Brewer and hang out with them before Carl left. We're going to miss them! But hopefully after a quick year they'll be back!! Carl and Audrey, if you're reading this, you better come back!