California McMillans

Ok, I LOVE Susan, Tyler's liver nurse specialist. I also love Dr. Rosenthal, the New Yorker, top pediatric liver specialist who tells it how it is. Last week we put Tyler on Enfamil Gentlease, a formula for gassy/fussy babies, AKA Tyler. His pediatric specialist said hopefully it will help. First thing Dr. Rosenthal says is, "what the hell is that?" Almost a duh, why did you do that? I told him, I thought gassy/fussy/crying baby needs formula to help gassy baby. Nope! I soon learned that Tyler, our liver malfunction baby needs something with MCT oil that has broken down fats that can be absorbed without proper liver function. So we will start a new formula, Pregestimil, that will fatten this boy up, hopefully at least add an ounce. Have to love special formula. We are hoping insurance covers some of the cost. Usually it is just covered with feeding tubes, but we'll see. We met with a liver specialist nutritionist who gave us the weekly recipes to add calories. Normal

Scott's Baby. Mom, Grandma and Ruby ( scott's best friend) 1/2 of Mom and Baby Brother Mom. Scott steals the camera any chance he can get and loves to snap pictures of his baby. He also told me and Grandma to sit, sit, sit so he could take our picture. I am quite proud of his photographic skills. I love that toddlers want to do anything and everything that mom and dad do. Toys are over-rated, they want the real thing. Danny is on the look out for a used " didge " for Scott. As for Tyler, here are the results from our labs and Dr. appt . Tyler's direct bilirubin counts went from 5.7 to 6.8 and total bili from 9.0 to 9.1. He weighed in at 10.14 ounces (1%) for his age and a whooping 25 1/4" (25%). So the bilirubin went a little higher, however, his poop is looking better, which we were told might be the first indication that medication is working. We will see what Dr. Rosenthal has to say tomorrow. We are hoping for no liver surgeries prior to his heart

Scott is Twoooo as he says. We had a last minute birthday party thanks to my parents and of course he was spoiled. Scott had his annual train cake, which he loved since his world revolves around trains. Retired Grandpa had a great time decorating it. Presents included a motorcycle just like dad, trucks as big as he is which he pushes around and says "beep, beep", a tool chest, tools, Thomas videos, Aladdin , Finding Nemo , play- doh , drawing things, blocks and books. Can you tell this boy is just like his dad? His world revolves around trucks, trains and tools. A day in the life of our 2 year old...waking up to the sound of a truck. Climbing on top of his changing table to watch the trucks through his window. Insisting on watching CARS anytime of the day. WaWa and Moooor . Cooking, watching his baby who he loves, throwing occasional tantrums, binky's , lining up cars, jumping on the trampoline or off the couch (whichever is accessible ). Everyday he brings endless joy

President Gordon B. Hinckley, the 15th President of The Church of Jesus Christ of Latter-day Saints died last night at the age of 97. He was the President since 1995. I am so grateful for his constant love and teachings. He was always full of optimism and faith. I know that his teachings will live on forever. Although he will be greatly missed, I know that he is in a better place. These are some of my favorite quotes, "There is no end to the good we can do, to the influence we can have with others. Let us not dwell on the critical or the negative. Let us pray for strength; let us pray for capacity and desire to assist others. Let us radiate the light of the gospel at all times and all places, that the Spirit of the Redeemer may radiate from us. In the words of the Lord to Joshua, brethren, "be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God [will be] with thee whithersoever thou goest" ( Joshua 1:9 ). "I plead with you to

So Danny and I go to church and hang out in these little rooms most of the time listening to the talks over the intercom so that Tyler and Scott are more protected from the bizilions of germs there. I feel bad because Scott used to love going and playing and singing with his little friends in nursery, but I know we will get back to those days before we know it. However, I don't think Scott had anything to complain about today. He fell asleep in the room we sit during Sunday School and we couldn't help but take some pictures. Church was so great today. It just gives me the boost I need for the week. We talked about finding a balance in all things and the importance for kids to have free-time to be kids. I love getting ideas from other moms who have so much experience and always come away feeling uplifted. Annie, one of our teachers, who I love, shared this amazing poem about treasuring every moment with the ones you love. I felt like I was able to understand just a small bit of

Tyler rolled from front to back and back to front today. Yeah!! We are so proud of our little one. It just makes you so happy to see him making little milestones. We feel so very blessed for these little things in life. For some reasons these steps weren't appreciated as much with Scott. I am grateful that I can realize all of the little joys in life more now than before. Life is too short to sweat the small stuff or spend a day unhappy or upset about things out of your control. More and more I feel bad for people who find things to get upset or sad about and just want to tell them to enjoy each day and all the things we have to be grateful for.

Happy Birthday Heather! Heather and Jason back in the beginning of January. Kelly and Shawn are friends from high school. Have fun on your trip Kelly. Heather with friends from work and high school. Heather turned 29 on January 1st. She and Melissa just celebrated their birthdays with friends, which was so much fun. We had a scavenger hunt, which I have to get pictures of because they are hysterical. Of course our team, the McMillans, Maddoxes and Jeremy won. Stops included the firehouse for a quick pic with a fireman, in back of a cop car, a manly makeover at a make-up counter, visit with a Doctor (thanks Dr. Dan..that was easy for us), playing the piano, finding her cat, a karoake stop, finding a red-bearded man, a security guard, some educational books at barnes & noble...the list goes on and on. We lucked out the entire night. For example, we went to Longs to develop a pic and there were cops chatting outside their cars. Everyone had a blast. More pictures to come of the sca

Danny and I get these bills in the mail and we don't even know what they are for. Makes health insurance really easy to pay. We are very grateful that we asked for money to help with Tyler's medical expenses this year for Christmas instead of material things. Giving the opportunity to have better health is the best feeling. I am so grateful we live in a country that allows Tyler to receive the treatment and surgeries that he needs. Our Cute Boy. He is such an inspiration to me. He smiles amidst all that his little body is going through. I so wish I could trade places with him at times, but know that he is such a special little guy that is teaching me so much with his strong spirit and desire to fight. For that I love him that much more and am so grateful he is our son. Well, Tylers oxygen sats hung out in the 60-70's, but got into the 80's after much coaxing and encouraging. That could have been better. His weight was 10.1 lbs so that was not good news. We could te

Ok , so last week I was having this problem. Some might call it being self-righteous, others prideful, others ungrateful, others judgmental . Well...it was probably all of the above. The day before Tyler was going to the hospital for Liver tests, Danny and I were having a rough week and worried. Anyway, I heard from a friend (don't worry, it isn't you, this person doesn't blog or check our blog), about one more thing in her life that was tough. Instead of having added sympathy, I thought, "THAT ISN'T THAT BIG OF A DEAL!! Your kid is healthy, you are soo blessed with so many great things in your life and all you do is complain about everything that is bad or hard. Why can't you see all the good things in your life??" Since, I have realized, maybe this issue really was a big deal and maybe her life really is tough and these things that I perceived to be no big deals, or maybe to me aren't that big of a deal, are in reality really hard. She probably woul

Scott & Dad watching Cars...Scott got the best seat in town. Tyler playing with his hands. He loves to eat them (picked this up during his fasts), looking at them and reaching for things. Tyler slept for 5 hours straight!!! It is a miracle and we are functioning beings again. I feel like I can breathe a little bit and am looking forward to a very relaxing week with 0 doctor appts as of now. We have to go in for labs which are so sad because Tyler screams and it's hard to get a vein, but now I know to go right up to the pediatric clinic instead of letting people poke and miss. His poop and pee seems to be getting more yellow, although they still have a long way to go. This is a good sign since it shows his liver is hopefully functioning better. We will keep you updated on poop. It is our favorite thing to examine these days. Last week we spent about 18 hours at the doctors....this is still so much lower than so many other people and nothing to complain about. I am grateful he is

For those who don't know Danny is an amazing pianist. He played primary songs (hymns for children) today which were so fun and helped us reflect on the Lord and his many blessings today. Tyler loves listening to him play the piano. Nothing would console him tonight, so Danny put him in the BabyBjorn, started playing and VOILA!! Maybe Tyler will be a little pianist someday.

I do love UCSF. Dr. Rosenthal, Medical director, Pediatric Liver Transplant Program is "an internationally renowned specialist in children's liver disease and director of Pediatric Hepatology, with honors in the pharmaceutical treatment of hepatitis B and C, genetics and immunology of biliary atresia and the quality of life after liver transplants in children," so says the internet, met with us on his day off within 12 hours notice. After meeting with him, I am a little too informed about the problems of the liver. He thought Tyler possibly had biliary atresia, when tubes that carry bile from the liver to the intestine are damaged just before birth for an unknown cause. The bile builds up in the liver and starts to poison it. It is usually seen at birth and can sometimes be fixed with surgery in the first 2 months, however, is very difficult to fix in rare cases when children are detected at 4-5 months, like Tyler. This is why he was meeting with Tyler today. There was no

Some December Pictures The HIDA scan results came back showing that there is a blockeage leading into the bile duct, however, it was unclear with what is causing the block and where it is. One would think that it is not a congenital defect such as a narrowing, since he wasn't jaundice from the beginning and is instead something that has grown and pushed against his liver causing the sudden problem and jaundice. The next step would be to do an invasive diagnostic test, such as a liver biopsy. They want his heart and liver team to work together. We are off to UCSF tomorrow to do blood work, another ultrasound and go from there. The clinic is normally closed so we are very grateful they are taking Tyler and running these tests STAT which hopefully mean they will figure out the problem tomorrow. Heart cath is still planned for tuesday so we shall see. Keep little Tyler in your prayers.

11pm Tyler is finally asleep 1230-100AM Feed Tyler 230-300AM Feed Tyler 430-530AM Feed Tyler 7AM Feed Tyler before he begins his fast 8AM Scott eats, takes a bath, cuts his finger and cries 9AM HIDA Scan in Radioactive Imaging Dept. 915-945 Work on getting an IV in Tyler. Trip to pediatric floor to start an IV going in his hand. His right arm is too scarred and left arm is all bruised from failed attempts in the ER and radioactive dept. 10AM-11AM HIDA scan. Can you find Tyler? If you click on the image you can actually see the picture of his liver on the screen. The machine picks up 1 picture/second. They record 1 picture/minute. 1115-1200 Waiting & EKG. Tyler with his EKG wires. I am pretty sure the wires weigh more than he does. 1200 Echo & Dr. Coopers (Cardiologist) Appt 1250 Dr. Hahn (Pediatrician) checks out Tyler This is a picture of Dr. Coopers clan. Anne is Tyler's case manager and my saint. She organizes everything, helps with everything and answers questi

Ultrasound results showed right kidney to be normal. Left kidney might have something insignificant. I am sure we will know if Tyler passes a stone. He has some type of obstruction in liver or bile duct which requires a HIDA scan....Are you ready for Heidi's medical reading of the day. A HIDA scan is an imaging test used to examine the gallbladder and the ducts leading into and out of the gallbladder. In this test, also referred to as cholescintigraphy, the patient receives an intravenous injection of a radioactive material called hydroxy iminodiacetic acid (HIDA). The HIDA material is taken up by the liver and excreted into the biliary tract. In a healthy person, HIDA will pass through the bile ducts and into the cystic duct to enter the gallbladder. It will also pass into the common bile duct and enter the small intestine, from which it eventually makes its way out of the body in the stool. HIDA imaging is done by a nuclear scanner, which takes pictures of the patient's bi

Tyler had an ultrasound of the liver and kidney tonight. The radiologist will look at it tomorrow. So far it looks like there is a kidney stone and something unusual going on with his liver/bile duct. The poor little guy. He is going through so much. I tell everyone kidney stones are the worst pain I have ever experienced and I have had two kids with no meds. I feel so bad for him. We'll keep you updated tomorrow after our appt with the doctor. Keep Tyler in your prayers. I am grateful for the medical team working on this. The pediatrician, cardiologist, infectious disease specialist and gastroenterologist are all trying to figure this out. We are grateful for the great team that is helping him. They are trying to get this situated so his surgery can go forward next week, but I am getting doubtful that this will be taken care of that suddenly. We shall see.

Is Tyler yellow or is scott white? One of our friends at church said that she kind of likes the jaundice look. I think it kind of looks like a fake and bake. Sadly, it's not a tan since he can't be in the sun due to his heart meds. Scott LOVES to help with Tyler's bath. He pulls his chair up and rubs soap all over Tyler's body. I just love these brother moments. I do love having them so close in age, even though right now it is difficult that Tyler doesn't like to sleep at night and has so many dr. appts. I just keep thinking to myself, "this too will pass." I know they are going to be great buddies and I love that they are both boys and 19 months apart.

Well, after an 8 1/2 hour emergency visit, Tyler was released home to run further tests tomorrow. We went to the ER because Tyler was looking very jaundiced. It is amazing how much closer we have to watch him because of his heart condition. I learned that jaundice, which we all know is very common and not a big deal in newborns, is a big deal in older babies, like Tyler. When a child shows signs of jaundice after weeks or months, it's usually associated with liver failure. The ER doctors ran bilirubin tests and they showed that the levels were at 6, which is very elevated. Normal is <1. Jaundice is yellowish discoloration of the skin and eyes caused by hyperbilirubinemia. When red blood cells die, the heme in their hemoglobin is converted to bilirubin in the spleen and in the hepatocytes in the liver. The bilirubin is processed by the liver, enters bile and is eventually excreted through feces. For some reason he isn't excreting it. There are three different classes of cause

Tyler was looking jaundiced, so Heidi took him in to the hospital today. Maybe they'll give us a home blue light kit. This week, I hit the end of my rope. That's not so bad, though, because the only way is up! It's not always smiles and business during the midnight feedings. But last night, from 12:50 am to 1:47, I fed him 120 mL, burped him three times, and then cleaned up around the house. Then, I put him in the swing and he slept until almost 4:00! This was when his complexion was a little more pink. Everyone comments on his beautiful eyes. Thank you!

People have been asking about Tyler's upcoming surgery plans. Tyler goes to UCSF for his cath first thing in the morning, 2 weeks from today, 1/22. A doctor inserts a thin plastic tube (catheter) into an artery or vein in the arm or leg. From there it can be advanced into the chambers of the heart or into the coronary arteries. This test can measure blood pressure within the heart and how much oxygen is in the blood. It's used to get information about the pumping ability of the heart muscle. Catheters are also used to inject dye into the coronary arteries. Catheterization is often done on infants and children to examine or treat congenital. This will done to help the doctors determine if the lungs are developed enough to preform the Glenn procedure. It will also allow them to see what needs to be repaired. Holes, coartations, and leaky valves are often repaired. The surgical team will hopefully meet Tuesday or Wednesday and discuss Tyler's upcoming Glenn procedure th

The bidirectional Glenn procedure is the surgery used to prepare the heart for a Fontan procedure , Tyler's final stage of the Norwood typically done at 3-5 years. It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The bidirectional shunt is performed by connecting the superior vena cava (SVC) to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart. At a second operation, the lower body venous blood will also be diverted to the lungs, thus creating the "complete" Fontan circulation.The bidirectional Glenn shunt is preferred in very small babies - below 2 years of age - in whom the lung vessel resistance is still quite high. While avoiding the risk of failure of a complete Fontan

I am so excited my brother-in-law started a blog. My in-laws all live in Utah and I have been waiting for them to begin blogging. Way to go David!!! Inspired by my happiness of the Uncle David Club Blog these are my thoughts on why you should start a blog if you don't have one. There are a couple of people that I am patiently waiting for to start blogging. All of the GG's , our family (way to go Jason, Heather, Juliann and David for having one), all my companions (I especially want to see one for Little River) and so many more. Blogging is more fun than working Everybody is doing it People are dying to find out about your travels, successes and life after high school If you don't have a life, it is a service to allow others to feel good about their lives. You can find great deals, coupons and so much more..the daily wish dish. It is easier than keeping a journal In 10 years from now you'll get a good laugh at the hysterical clothes & hairstyle you showed off to

Well, my dad has been talking about it for years and finally did it...RETIRED!!! We are so proud of him. Here is a little party that Kaiser put together for him at the Hilton which was so nice. Danny put together a great slide show of his life. Here is a speech Heather & I gave. "Walt Lietz, The Manager at Home" First off, we would like to Congratulate our Dad. We are so proud of him and all that he has accomplished. His strong work ethic and dedication has blessed the lives of so many including helping to shape me and my sister into the women we are today. We figured it would be fun to let you know the Walt Lietz outside of the office. I’m sure there are several similarities as well as differences between Walt as a co-worker, father, husband and friend. We hope we can help paint the picture of the Dad we admire and love so much. To Start off here is a little background… Walt Lietz was born on Christmas day, 1942 in New York City to German immigrants. He was not taught