Tylers Liver Appt

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 intake is 20 calorie, he is on 22 calorie intake and we hope to bump it up to 30 calorie within two weeks. We get back labs tonight or tomorrow. They said that it is a good sign the poop is changing color, bili counts might take a while to normalize and skin color is the last thing to normalize. He was placed on a higher dose Orso...to increase bile flow, Zantac, which they said could only help if he has acid reflux and this new formula. It is important to tackle the liver problem so he doesn't get colitis(??), an infection related to his liver/bile issues. They don't want to proceed with heart surgery with an increased risk of colon infection, since infections are hard to trace, can lead to the heart and cause serious problems. So the liver doctors have a month to "fix him" as they say. O2 Sats 72...not great; he needs the Glenn. I HATE HATE HATE taking him to get labs. His veins collapse, it is so painful how they search for veins, it is the worst in infants. I pray that nobody has to get blood work on a tiny infant. My heart goes out to these babies.

Scott's Photos & Tyler's Bili Counts

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 surgery, however, want to fix whatever is bothering his GI and liver. I'll keep you updated. He is such a strong little guy. We love them both so much.

Scott is Twoooo!

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 and love into our lives with all his kisses and hugs. He makes us laugh. He is full of energy and exploration. We feel so blessed to have him in our lives and can't believe he is 2!! I think 2 year-olds are the BEST!! They have so much personality, are so much fun and so full of love. Happy birthday Scott. We love you!

President Hinckley

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 control your tempers, to put a smile upon your faces, which will erase anger; speak out with words of love and peace, appreciation, and respect. If you will do this, your lives will be without regret. Your marriages and family relationships will be preserved. You will be much happier. You will do greater good. You will feel a sense of peace that will be wonderful."

"The gospel of Jesus Christ is the way of peace. To the extent we follow it and incorporate it in our lives, to this extent will we be blessed and prospered. What a wonderful thing it is to be involved in this glorious work. Let us rejoice in our great opportunity. Let us serve with gladness."

Church

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 what this means prior to bringing Tyler into UCSF for his liver. I didn't know if he needed liver surgery and wasn't sure when the next time he would come home with us was and I held him extra tight that night and cherished my time with him more than usual. I love this poem!! It was written by a husband who lost his wife from an airplane crash in Brazil killing nearly 200 people. Thanks for sharing it Annie.

If I knew this would be the last time I would watch you sleep,I would hug you tighter. I would plead with the Lord to protect you.If I knew this would be the last time I saw you walk out the door,I would hug and kiss you and call you back to hug and kiss you one more time.

If I knew this would be the last time I would hear your voice in prayer,I would record every gesture, every look, every smile, every one of your words,So that I could listen to it later, day after day. If I knew this would be the last time, I would spend an extra minute or two to tell you, "I love you," instead of assuming you already knew it. If I knew this would be our last time, our last moment, I would be by your side, spending the day with you instead of thinking,"Well, I'm sure other opportunities will come, so I can let this day go by." Of course there will be a day to revise things,And we would have a second chance to do things right.Oh, of course there will be another day for us to say, "I love you."And certainly there will be another chance to tell each other, "Can I help with anything?"But in my case, there isn't one!I don't have you here with me, and today is the last day we have—our farewell.Therefore I would like to say how much I love you,And I hope you never forget it. Tomorrow is not promised to anyone, young or old.Today might be your last chance to hold tight to the hand of the one you love and show all you feel. If you are waiting for tomorrow, why not do it today?Because if tomorrow never comes, you certainly will regret for the rest of your life Not having spent some extra time for a smile, a conversation, a hug, a kiss,Because you were too busy to give that person what ended up being their last wish. Then hug tight today the one you love, your friends, your family, and whisper in their ears how much you love them and want them close to you.Use your time to say,"I'm sorry," "Please," "Forgive me,""Thank you,"Or even,"That was nothing,""It's all right," Because if tomorrow never comes, you will not have to regret today.The past doesn't come back, and the future might not come!

Tyler's Milestone

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!!

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 scavenger hunt. Heather deserves the best birthday ever. She is one of the kindest, most generous, loving, fun person that I know. I don't know what I did to be blessed with such a great sister that has taught me and continues to teach me so much about life. She has been through so much this year and has remained so positive through it all. I love you!! To a great 30th year. Happy Birthday Heather.