Thursday, January 31, 2008

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 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.

Wednesday, January 30, 2008

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

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.

Tuesday, January 29, 2008

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!

Monday, January 28, 2008

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."


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!

Sunday, January 27, 2008

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.

Friday, January 25, 2008

Tyler's Cardiac Appt

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 tell his weight has not been doing well. Basically we had a child who was not thriving to really not thriving...degressing. I was promised that there was a GREAT pediatric tech to draw blood, which I am sure she is but had a hard time with Tyler. One art line collapsed, second line collapsed in his wrist which are really uncomfortable. I was told after waiting to see if they had enough blood that they had enough and I could leave....2 hours later. I got the results back, which are better, but still not very good and there was no bilirubin result which I thought was weird. Got called at 415 on my way to work and a banquet I was in charge of for 200 people to tell me to bring Tyler back because there wasn't enough blood to run bilirubin levels. I felt SOO bad for him. It is just so sad to see your kid all bruised up and so sad. His sats aren't doing well and his weight gain isn't doing well which most likely indicates he needs his Glenn procedure. I was told that Hypoplastic kids generally plateau prior to this surgery because their hearts are working harder and need that surgery to get a little break. Basically the calories other kids use to gain weight are used by his heart working extra hard for his little body. Not to mention that he is often uncomfortable which doctors say can very well be linked to his gallbladder/bile issues. I have never had junk in my gallbladder, but people have told me it is really uncomfortable. Our poor little man. Hopefully next weeks appt goes well and we will be able to go ahead with the Glenn in a month. We go see Dr. Rosenthal at UCSF next Thursday. Better day tomorrow.

My Pity Party

Ok, so last week I was having this problem. Some might call it being self-righteous, others prideful, others ungrateful, others judgmental. 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 would think the same thing about a lot of the stuff that I worry about. With that being said, I am repenting and have since realized we all have our different trials for a reason and you can't compare them to each other. Like Danny always reminds me, "one persons bloody nose can be harder for them than another persons broken back." It is true. Anyway, I am grateful that I have my own personal trials. They have made me and my family better people and helped us draw closer to God. They are making me more empathetic, even though, for a period I was being unsympathetic. I realize I can't judge people anymore, but instead try to understand them by having added sympathy and empathy. I also realized that it is important to surround yourself with positive people when you are going through a hard time. It makes things easier. I want to get to the point that I can listen to someone talk about a trial, and no matter how big or small, think, "that must be really hard." Life..isn't it great! Always working on becoming better in one way or another. Thank goodness people are living longer these days...I need all the years I can to keep improving. This realization also allowed me to realize how very blessed my family is as I reflected on how great our life is and how many wonderful people we have in it!! We are grateful for you. The pics are some of my greatest blessings!!

Monday, January 21, 2008

Our Upcoming Week

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 home with us. I treasure having him home. For a couple of days I wasn't sure what his prognosis would be and how long he would be at home with us. Look forward to a blog full of fun, relaxation and the McMillans away from the doctors. I know we are looking forward to it. What are we doing right now? Watching CARS. It is Scott's favorite movie. Fun times.

Sunday, January 20, 2008

Playing the Piano

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.

Friday, January 18, 2008

Tyler's Liver Appt

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 not much time to work with if this was the case. He said liver transplants are usually the method of repair at this stage, but put me at ease because, "the liver and skin are the only organs that regenerate themselves, you don't need a perfect match, mothers can be good donors, and it is the best organ to transplant unlike the heart or other organs." I couldn't stop laughing on the way home, when I realized I was actually relieved after talking to him that it was only a liver transplant that Tyler might need and not some other type of transplant. So after being prepped for the worst...I said I read on the internet that stones sometimes come from being on an IV feeding tube. The UCSF heart doctors were supposed to talk to him and tell him all of this which apparently didn't happen. For that, Robin and I got to hear all about biliary atresia and liver transplants.

After finding out Tyler was on total parenteral nutrition (TPN), a method of feeding that bypasses the gastrointestinal tract, he quickly changed his notion of biliary artresia to TPN--a much better diagnosis. When fluids are given into a vein to provide most of the necessary nutrients the body needs, the persons biles sometimes don't function properly after receiving gastric feedings. The ultrasound shows that Tyler has a lot of "sludge" in his bile, expanded bile, that is basically poisoning his body. His bilirubin count is now a 9. So what do you do with TPN? 1. give a "draino" medication named after an oso, bear, called "orso.." to unclog the bile duct. If that doesn't work 2. inject it surgically to try to drain it. 3. Do a procedure similar to a cath. They started with #1, so he is on medicine. We will do labs in a week and meet with the great doctor in 2 weeks to see if he needs a surgerical procedure. They hope he doesn't since it gets complicated with his heart.

Well, we went from the biliary atresia notion and liver transplant solution to TPN and medication. We are hoping it works. Tonight his poop changed from all white, to white with big chalky-like strands of dark yellow. Hopefully the draino is working. The catheterization has been postponed. Dr. Rosenthal said Tyler isn't functioning very well without his liver. It is only organ with LIVE and EVIL as he explained; the heart comes secondary. I wonder what the heart specialists would think about that.

So why did I go through this. To realize it is out of my hands. To realize people have problems far greater than mine. There are a lot of syndromes that cause heart and liver failure, which makes a critical situation a very critical situation. To tell you to be an organ donor. I thought for a period today that Tyler would not just need a heart someday, but a liver today. To tell you that I am so grateful for men and women who dedicate their lives to medicine. When we were leaving, Sanjee was in the elevator and he said hello. I got to show him out miracle child. Who is Sanjee? A very special doctor because he revived Tyler by preforming CPR on his little heart for 30 minutes until he was placed on heart/lung bypass. It made my day to see him, say thank you and tell him that Tyler is here because of him.

WHAT A WEEK. I am hoping that my blog entries become less informative and full of more pictures. That indicates not much is happening, which we like these days. There is just so much to update and this is a journal for me as well of the sagas, blessings, highlights and lowlights of the McMillans.

Thursday, January 17, 2008

Tylers Update

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.

Wednesday, January 16, 2008

Our Day

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 questions or concerns I have. She makes sure Tyler is doing well and even gave scott juice and crackers today while Danny and tyler where in the HIDA scan. What a great nurse. Dr. Cooper is the greatest cardiologist I know. So nice, so knowledgeable and loves his cardiac kids. Nanci does Tyler's echos with Dr. Cooper.

1-145 Heidi eats breakfast and Danny eats lunch...a little R&R. The boys are watching Tool Time. Isn't that a perfect show for Danny? Anyway, I loved the position that Scott found to relax. We love them sooo much. He is such a great kid and was so patient at the hospital waiting for Tyler's test.

200 return for HIDA scan that shows body is still high is radioactive material, Appt to return tomorrow morning for another scan
300-500 Play with Scott & Tyler

5-730 Work
730-830 Dinner, clean up & bedtime for Scott
900 Blog

Hoping Tyler goes to bed soon to start again tomorrrrrrrooooowwwwww....
So people ask how we are doing. We are doing pretty well and realize that Tyler is going to have bumps in the road. You learn with a critical child to go with the flow of things and to never have definite plans or dates for surgeries, coming home or appts. Even though it might not seem like it from our daily log, Tyler is sleeping more in the night which is a great blessing for him, me and Danny. About 3 weeks ago Danny and I were on the brink of not functioning and realized there was no way but up with his sleeping. He still gets up several times a night, but sleeps for 2 hours at a time, which we are very grateful for. My dad took Scott for the day on Monday and I realized you can go on about 1 hour sleep if you don't need to to chase a toddler around all day. It was the most relaxing day I have had since his birth. I missed out on the bonus day in the hospital. Those were the days. I know people with more than two kids are thinking of my two kids and saying to themselves...those were the days when I had some free time. Isn't life and kids great! They haven't gotten back to us from the scan. It looks like he has some type of cysts from the ultrasound and they hope the scan shows needed details. The cardiolgy and endocrinology teams need to get together and figure out if they need to help the heart or liver first. They are going to do any liver surgeries at UCSF since his cardiac team is there. That is a great blessing since they do have some of the best surgeons in the world. Keep you posted tomorrow. Tyler is a tough little guy. Amidst what he goes through he is still smiling. He truly is an example to all and makes me realize that I am blessed and have a lot to smile about. I have a great husband, two great sons who are full of love and help me appreciate the little things in life.

Tuesday, January 15, 2008

Tylers Tuesday Treatment

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 biliary tract over the course of about two hours. The images are then examined by a radiologist, who interprets the results. It is generally a very safe test and is well tolerated by most patients.

Usually, HIDA scans are ordered for patients who are suspected of having an obstruction in the biliary tract, most commonly those who are thought to have a stone blocking the cystic duct leading out of the gallbladder. Such a scenario is consistent with acute cholecystitis, which often requires surgical removal of the gallbladder. In cholecystitis, HIDA will appear in the bile ducts, but it will not enter the cystic duct or the gallbladder -- a finding that indicates obstruction. If the HIDA enters the bile ducts but does not enter the small intestine, then an obstruction of the bile duct (usually due to stones or cancer) is suspected.

Did this mention that you are supposed to fast for 4-6 hours prior to the test? Did it mention that it lasts at least 2 hours...good luck with that. These guys don't need medical training to scan, but training in how to keep a baby happy and still for that long. Last time they sedated him they put Tyler back into drug withdrawal which required Methadone to get him out of it. Has anyone thought about this child being similar to a heroin addict his first month related to liver problems? Ok, I will stop being sarcastic now and keep you updated after the test.

Monday, January 14, 2008

Ultrasound Update

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.

Why do I love brother pictures so much??

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.

Sunday, January 13, 2008


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 causes for jaundice. Pre-hepatic or hemolytic causes, where too many red blood cells are broken down, hepatic causes where the processing of bilirubin in the liver does not function correctly, and post-hepatic or extrahepatic causes, where the removal of bile is disturbed. In simple terms, they think that Tyler either has hepatic causes, acquired hepatitis from a blood transfusion or has some type of viral infection. Or has post-hepatic, a blockage from poor circulation or a blood clot due to his heart, a malformed liver or obstruction such as a cyst. Lastly, he could have liver failure due to congestive heart failure, however, they don't think this is the case. They are going to do an extensive ultrasound of his liver to check for malformations or obstructions tomorrow or Tuesday and are doing all types of blood work to further diagnose. We will keep you posted. Heidi's medical advice..if you notice your kid is jaundiced weeks or months after being born bring them could be a big deal. We'll keep you updated on the medical sagas of our little one. We are both pretty tired from lack of sleep so night night. I'll post pics tomorrow of our yellow boy and ER visit.

We are hanging in there

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!

Tuesday, January 8, 2008

Cardiac Catheterization

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 that we hope to be done that week if he is ready.

Tyler's Upcoming Glenn Procedure

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 operation, it also partly relieves symptoms. Typically quality of life for HLHS infants increases after the Glenn procedure because of a decrease in volume load on the single ventricle while improving oxygen saturation as compared to the pre-operative state. In addition, by being a low-pressure shunt, it does not carry the risk of causing lung blood vessel thickening and hardening.

Monday, January 7, 2008

Heidi's Top 10 Reasons to Start a Blog

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.

  1. Blogging is more fun than working
  2. Everybody is doing it
  3. People are dying to find out about your travels, successes and life after high school
  4. If you don't have a life, it is a service to allow others to feel good about their lives.

  5. You can find great deals, coupons and so much more..the daily wish dish.

  6. It is easier than keeping a journal

  7. In 10 years from now you'll get a good laugh at the hysterical clothes & hairstyle you showed off to the world

  8. You can share your millions of great ideas to the world

  9. More importantly you can get great ideas from others.

  10. Elder Ballard, for those of you who know him, a leader of our church, said to do it.
Most importantly, I want you to start a blog. It is really easy, it is free and blogspot just brings you through the process step by step. If you don't want the world to see your every vacation, adventure, spelling mistake, or bad idea that you had you can block your blog so just friends can see it. There is no excuse. Start today. That is my commercial for blogging. Hope to see your blog soon!

Sunday, January 6, 2008

Congratulations Dad!!

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 English until kindergarden. That might help explain his difficulty with spelling. Thank goodness for modern day Spell Check. He worked hard at his fathers nursery and excelled in school, graduating with honors to attend Rensailliar Polytechnic Institute in Troy, NY. High level calculus persuaded him to switch majors from Engineering to Psychology, which worked out to his advantage considering he was preparing to live with us, a houseful of women, and had to manage a whole bunch of you.

After college, Walt moved to NYC to pursue a career in banking. At the age of 30, Walt met Jacquie (his wife of 31 years). In 1977 they decided to leave behind family and friends and make the big move to sunny California to pursue a job with Levi Strauss. In 1979, they celebrated the New year with the birth of their daughter Heather and their precious angel Heidi, that’s me, was born 2 years later.

As you begin to get older, you start to appreciate the parts of your parents that you didn’t notice growing up. You begin to understand that your Dad is a real person with true feelings, goals and of course quarks. Now that he is retired and you can’t embarrass him every day in the office, I guess we can let you in on a few of our favorite stories about our Dad that help explain the man he really is.

His AppearanceOur Dad has truly looked the same for the last 30 years with the exception of a few minor changes. He no longer wears bell bottoms, traded in his large frame glasses with eye surgery, shaved his beard and most importantly got rid of his comb over. It was my wish that he shave his head for my wedding. I wasn’t trying to be trivial but knew how much better he would look without it. Sure enough, my Dad came home a few days later with a shaved head. This reminded me that my Dad did everything for us girls. I didn’t have to beg, I simply asked and days later he did it. He always wanted us to be happy and would do anything without a 2nd thought for his girls. Too bad we haven’t met many of you until tonight. You just might have gotten a couple more vacation days, a bigger bonus, that project you needed done a little bit sooner or more donut days if you knew to go through us.

His Rituals
My Dad is a creature of habit. He has rituals that must be done daily, nightly and weekly. If they aren’t done he isn’t one to get frustrated, but takes the time to ensure order and cleanliness. Yes, it is somewhat obsessive compulsive.

#1 – Take a nightly trip to the grocery store. Without fail, the fridge needs to be stocked, even if it is just for one gallon of milk, some fresh strawberries or a new gallon of ice cream. If you haven’t heard, my dad is very pleased with Walnut Creek shopping…AKA a local Costco and now loves to make pit stops at our houses to
deliver the goods and ensure we are well taken care of. #2 - Re-arrange the cars.
Yes, growing up every night he re-arranged all 6 cars in the driveway. Each car had its spot either in the garage, on the curb or in the driveway. #3 – Put misplaced shoes back in their appropriate place. The house was always kept clean amidst living with all girls with way too many shoes left in every room of the house. #4 - The breakfast table was set. No, I don’t mean 1st thing in the morning, it needed to be done the night before. He was preparing for a luxurious breakfast buffet that was made each morning including waffles, pancakes, omelets and fresh fruit.

All of these rituals were narrowed down to a science to ensure that we had as much quality time as possible. Sitting around the table for breakfast and dinner was valuable family time where we talked about school, sports, goals, stresses, hysterical stories of the day and life. These rituals ensured our family lived in a clean house, ate nutritious meals, and had time to sit and talk.

His Generosity
Growing up, my dad was very generous. Embarassing to admit, I had a credit card my Dad paid until the day I got married. Upon my request he cut it up at my rehearsal dinner to help curb my clothes buying habit. He is not one to worry about trivial things. From as long as I can remember, my dad drove a white pick-up truck. If he ever gave you a ride, you know this wasn’t a luxurious big, manly Chevy truck…our dad settled for a tiny white pick-up without power steering. Of course his girls got new cars: Me a Red Jeep Cherokee, Heidi a new Explorer, my Mom a BMW, and even my Grandma who lived with us a got a new Maxima. He provided for all of us with the very best.

His generosity stretched much farther than his family. He was always working on some elaborate volunteer project that nobody else was crazy enough to undertake. He made and compiled a cake for my 5th grade graduation consisting of over 50 separate cakes. He helped construct an impressive stage for the annual Walnut Creek Aquanuts Synchronized Swim show. He even swam in the show, showing off his synchro moves to the City. He helped us raise guide dogs, was the director of swim Invitationals hosting hundreds of swimmers, always graciously volunteering to throw a party for friends weddings, retirements, or birthdays. If it wasn’t enough to live with a houseful of women, including his mother-in-law, he always opened the guest room to anyone who needed a place to stay. At one time we had 2 German synchronized swimmers living with us for the summer, another swimmer stayed with us her junior and senior year of high school, foreign exchange students and even a few we wish to forget.

Most importantly he helped mold us into the individuals we are today. I remember talking with my dad about finding peace and fulfillment in life. Many people in today’s society think that success and fulfillment comes from a good job, a nice house or social status. My dad was quick to point out that in his life, fulfillment came from his marriage and seeing his daughters become self sufficient and successful young women.

He exemplified the importance of family in his daily life. After a long days work, I am sure he would often come home very tired, but always managed to find time and energy to help with dinner, the house, and our homework. No wonder why the only subject I struggled with was Spanish…I should have taken German. He has taught us to be kind and generous to all around us, so if you are ever in the area and want to enjoy his elaborate breakfasts, dinners or cakes stop on by. He has taught us to constantly strive to improve and excel in school, sports and life. We always heard how proud he was of us which instilled confidence in each of us. For this and so much more we want to say thank you dad.

You deserve the best retirement after 65 years of hard work, dedication and loyalty to the places you have worked and people you have worked with. After years of service, that I know will never end, don’t forget to take some time for yourself. You deserve it more than anyone we know. We know that your retirement will be surrounded with loved ones and parties with friends. Art classes where you can show off your artistic side. Drives on winding roads with the porshe club. Blessing your children with a great babysitter and more importantly grandchildren with your wisdom, love and someday homework help. Making wikipedia corrections to help the world gain correct knowledge. Traveling the world to see the beautiful sights of nature and different cultures. Working in your garden and building your elaborate greenhouse. Did I mention molding in my house and a sprinker system at Heathers? In all seriousness we love you and want to know how very proud we are of you. Congratulations on this exciting time in your life.