Surgery

They told us Tyler was done with surgery around 11, he came out at 12 and things look good. Dr. Azakie said, "well, things went well." "Anything more," I thought?? That was that. They took the shunt out and rerouted the blood to the lungs. I wrote about the Glenn in an earlier entry a month ago if you want to understand more. They are working on stabilizing him and he looks much more like Scott as a 6 month old now that he is swollen. He was extubated at 5:30 pm and they will continue to watch him. Hopefully we will be arrythmia and infection free. Thanks for all the prayers!! We are soo grateful for Dr. Azakie and his team-- Tylers little miracle workers!

Off to Surgery

Tyler went to surgery around 7:40 today. They brought him right to the OR since we were running late. They gave him anti-anxiety last night so he could sleep better. He is just so worked up from the environment. Joshua, a little boy who had the Norwood a week after Tyler, is in the bed next to us recovering from his Glenn from about 1 month ago. He looks great but got a staph infection and had some arrhythmia problems so will be here another two weeks or so if things go well. We wish him luck. I am grateful for the nurses and doctors. They work so hard for little Tyler. I'll keep you posted in a couple of hours.

Day 2

Things have gone fairly well today.  The doctors new approach is to not do anything to get him mad...I like this approach!  He still desats probably because he is uncomfortable from IV's, high flow O2 and the chaos.  He remains in the 60's occasionally going into the high 40's-50's with a high heart rate.  They had to give him morphine once today to calm him.  Other than that pretty uneventful day.  Post-op talk.  The Glenn is supposed to be easier on him than the Norwood because they are not planning on going into the heart.  They will just be re-routing plumbing around the heart.  He goes in tomorrow morning (7-8ish) and they hope to be done around 2-3ish.  They will probably have to put him on bypass and try to get the kids off ventilator withing 1-2 days because of the way their pulmonary artery receives lungs.  They have to do an art line or pic line which can take sometime and opening the chest is more difficult second time around.  Prognosis is 95% to get through this surgery which is much better than the Norwood.  Complications include pulmonary pressure problems, bleeding, stroke, arrhythmias (they will be looking for this due to his arrest after the norwood.  So pray for little Tyler tomorrow.  Recovery can be anywhere from 1-2 weeks to 1-2 months.  

Day 1 Night

I called Danny after work at 7pm and things were not going well. Tyler's sats were in the 30's and he had tachycardia, rapid heart rates in the 200's, so they transitioned him into the PCICU (ped cardiology ICU). He continued to be agitated. I wonder why?? They were not feeding him since he was on a high flow oxygen and had 2 IV's in. They put him on heparin (anti-coagulant med) because they thought the episode might be a result of a clot in his shunt. After he was upset and agitated for hours and hours, I got to the point that I was going to demand he be fed if they didn't feed him. 20 hours of fasting would put any baby into a state of agitation plus it isn't good for his liver condition to be on TPN. I just kept listening to my intuition and really felt that would calm him down. At 3AM they decided to let me try feeding him, he finally went to sleep and has been fairly stable. His sats are in the 60's, he is pretty happy considering where he is. In rounds they thought he was agitated considering the heart rate and sats have stabilized. They reduced heparin and state that he simply needs the Glenn procedure. As I said earlier, Tyler likes to pull out a few tricks along the way. We are grateful he is doing better and I am grateful the nurses are patient with my constant demands last night for food. Hopefully day 2 sagas at UCSF will be less eventful.

Let the days Begin...Day 1 Cath Lab

We got to the hospital at 9:30 AM, got an IV going after a couple tries, and were in the cath lab a little after 11. They anticipated things would go well. It was a diagnostic test with a possible chance of placing coils around pulmonary capillaries to stop blood flow to unneccessary areas. Bleeding, stroke, tickling the heart causing irregular rythyms are risks but we felt at peace. Danny and I went to the lab with Tyler. He was doing well when we were there except for sats in the 50's. They gave us a pager to give us updates and tell us when they would be done. We went to see Dr. Hine, at 450 Sutter, where Danny used to work and went out to lunch at the Hyatt. It was a BEAUTIFUL day, the restaurant looked out on the clear city and it was fun getting to know Dr. Hine. They called around 1:30 and said Tyler did well so we headed back to the hospital. He was still sedated so they did labs, echo, ekg to get ready for surgery. The cath went well with great pressures in his lung. Everything looked good to proceed with the Glenn. There is a coarctation in his aorta which might need a balloon angioplasty before the Fontan or final procedure. Danny stayed with Tyler and I headed home to be with Scott and go to work.

Todays walk

Imagine for a moment...Scott scooting on his little red car, me pushing the baby and beautiful weather. We crossed this little bridge over the Walnut "creek" and there was a huge "digger" waiting for us on the other side. Anyway, Scott loved every minute of it. He watched for about 20 minutes pointing fervently to the "truck" anytime it moved, dug or did anything that was extremely "cool" in his opinion. I was grateful for this because it allowed me to reflect on some of my greatest blessings. We had nowhere to go, but the park, all the time in the world, and I was able to just stand and watch my son learn and see this big truck move dirt. These little things make life so great. I love that my children are happy. It is so great for me to see my son growing up to be just like his dad. It is so important to let kids be kids. We finally made it to the park and had a great time. Scott let other kids ride his car and was so good at sharing. I am so proud of him. Tyler was all smiles. I can't tell you how much it means to me that Tyler isn't in constant pain. He has been feeling better for about a month and it makes me soo grateful. Life is great.

Reasons to Smile...

Tylers numbers(AST, ALT, t. bili;6.9) have improved. he gained weight, 10lb 14 oz to 11 lb 4oz, for the first time in weeks . He is eating a lot more. He wakes up by himself every 2 hours at night to eat instead of being too tired. Best part is that he is a happy boy and finally seems to be feeling better. He generally cries when he is tired, hungry, wants to be held, Scott drops a train on him or needs to poop...normal baby behavior. He is a pure delight and we are enjoying every minute of it. He laughs now which I LOVE!! I need to learn to post videos. I feel like he is the most stable he has ever been, which I know is an answer to prayers prior to his operation in 1 week. We go to UCSF Wed morning at 6AM for his cath. He will stay for pre-op testing until his surgery on Friday. Through this experience I have learned to listen to your intuition. Looking back I knew that his non-stop crying was more than colic or fussy baby things. It was an "I am in constant pain, help me cry." I feel so bad that he had gallblatter/intestine pain for so long but grateful that doctors were able to find the problem and help fix it. There are so many problems that can never be fixed and I feel so blessed for the great medical teams that have blessed little Tyler. Several people commented on what a cute and good baby we have yesterday. That is the first time that has ever happened. Ok, time to go play today. Scott was going to have a friend come over but he might be getting a cold...I hope our life returns to normal within a couple more months for Scott.

Park Days

Heather Farms, the park where I work. This is where Scott would go with his great babysitter ME while I was coaching.
Scott is on his FAVORITE car that he scoots around on and likes to beep while going backwards. My parents are remodeling and my dad made a mini ramp from woodm that Scott goes up and down all day.
I used to be really afraid of geese because either my mom or grandma told me that they would bite my fingers off if I went too close. Tramatizing childhood memories. Now I think they are pretty but poop way too much in the park.



"POP" with Tyler. My dad has been given a new name from Scott.

Park Days Continued

Have I ever mentioned that I LOVE warm weather!!! Nothing compares to being outdoors, going to the park and letting your boy be a boy. Scott loves to swing, climb up anything and jump off structures that are too tall for him to jump from. How did he grow up so fast?? The above behavior explains all cuts, bruises, and bumps that Scott has in almost every picture we ever take of him. I am going to have to put him on house arrest before taking any formal family photo. We walked to the park before church last Sunday. I love where we live. It is 5 minutes from the park, shopping, great restaurants and my work. What else could you ask for?? It would be nice if cost of living was cheaper...oh well....maybe we'll just be condo dwellers for life. It is the perfect life for now. Anyway, it was a great day!

Pier 39

Scott on the carousel. This was his favorite part.



Danny is in a photo quorem who asked him to take pictures of a tulip display at Pier 39...it was really pretty. Even cuter with Tyler in the picture. The last picture is of Scott watching the Sea Lions. That is always one of my favorite parts, even though there weren't many on the dock yesterday. A great day in the City with my boys.

Joleen...Super Star of the Month

This is Jolleen and her mom Mitzi just two days after the Glenn operation. She has been home for a couple of days now and is doing well. She had her Norwood procedure two days before Tyler and had her Glenn operation on February 8th. We saw her family the day before surgery at UCSF when Tyler had a liver appointment. Please include Joleen and her family in your prayers and thoughts. These little kids are such examples of strength, patience and love. I am grateful for the friendship that I have with Mitzi and for having the opportunity to meet little Jolleen. Way to go Jolleen!! You are a super star!!

Family History Sunday

Church was great today and focused on family history. I love hearing about influences of ancestors. Not everyone is famous, but everyone has a lasting impact, either for good or bad, on their families. I love researching my family history. I am grateful that Danny has spent time lately scanning pictures and documents of my ancestors. I did a lot of genealogy before my mission. I wrote relatives in Germany, whom I don't even know, and they sent me a genealogical book dating back to the 1500's of the Goos, my dad's mothers' line, family. A distant relative who was a lutheran pastor researched the line. Genealogy is the #2 hobby in the world. The book has stories of ancestors, birth, death, marriage, christening dates and photos which I love. I dedicate this post to my grandfather, Walter Lietz. He immigrated before War World II with nothing and lived the American dream. He had a wonderful marriage and wife who he adored. They raised two wonderful, successful kids who were 11 months apart. He worked so hard on his nursery which was a thriving business, which allowed him to put his grandchildren through college and retire in beautiful Malibu, California. He passed away at the age of 93 after a life of fulfillment and success.

My Grandfathers Certificate of Citizenship.


My Grandfathers flower shop in New York.
My cousin couldn't pronounce Grandpa, so "Ga" he was to us. Ga with my sister, Heather.

Tylers Weekly Update

Weight 10.14...not in the 11's this week, oh well. Sats were in the high 80's which is good to oxygenate his little brain. They debated whether or not to put a feeding tube in but decided against it since he is meeting his target amount. His heart is just burning up all his precious calories. His bili counts and liver counts were up from last week which isn't the best news. He was looking so good for a couple of days last week, however, has looked a little more yellow the past 2-3 days. We go back to Dr. Rosenthal next week. Hopefully he will be ready for surgery in two weeks. If that is what is meant to be I know that will happen. I hope we will see some improvements after the Glenn. We are putting in papers to get occupational therapy started for him. It generally takes about 45 days to get that approved. The therapists come to the home to keep him away from the germs in a hospital setting, which sounds great to me. Always planning for the future.

Danny is now working in Antioch/Brentwood

Danny has been working in Antioch/Brentwood for the past 3 months and loving it. It is quite exciting that he LOVES going to work. He always talked about his great staff, Dr. Wu's ethics and skills, and how busy he is staying. I was just relieved that he found a place where he feels the staff is on top of things and ethical(which surprisingly has been few and far between). Anyway, I have been to most of his offices since I have horrible teeth filled with cavities (I blame it on getting my dad's genes and pregnancy). Thank goodness I married a dentist. I was so impressed with the office that I had to write about it. It was the nicest, most modern office I have ever been to. His staff was friendly and the place ran so smoothly. These past two years have been very interesting and educational for Danny. He has had the opportunity to work under different doctors and has seen the good and the bad of dentistry which has been an invaluable experience. We both feel so fortunate that he has settled into Dr. Cademartori's in Walnut Creek and Dr. Wu's in Antioch who are both great mentors and clinicians in Danny's opinion. Danny has been in positions before where he feels the dentist aren't 100% ethical and he was always been quick to move on without having something else lined up. While this caused stress at times in my life, I admire him for the man that he is and dentist that he aspires to become. These experiences have increased my faith in knowing that as we choose the right something better always comes up.

Valentines Day has added meaning in our lives this year as we and virtually every state will celebrate "A Day For Hearts - Congenital Heart Defect Awareness Day." Congenital Heart Defect Awareness Week is February 7-14. Families intend to bring awareness to the general public about Congenital Heart Defects (CHD). It is our sincere hope that efforts to educate the public will result in additional funding for scientific research, support and educational services and early detection and screening. CHD is the number one birth defect affecting 1/100 babies and the number one cause of death from birth defects. Staged palliation for HLHS is one of the great achievements of congenital heart surgery in the 90's which has an overall 70-75% survival rate at age 5...a true miracle! We are grateful for the doctors, researchers and families in the past and present that have made it possible for Tyler to be fighting HLHS!

CARRYING THE SUITCASE TO THE CAR

A true gentlemen. Scott wants to do everything on his own. He tries to carry the baby seat w/ Tyler in it even though it is a tad too heavy for him. It is so cute seeing him want to do everything we do.

Grammy Came to Visit

Danny's mom came to visit for two days. It was so fun to have her in town. Scott loves to play with Grammy and Tyler loves to be held by her. It was great having her here to help with Scott and Tyler. Danny was able to work on his motorcycle and I had a much easier time going to Dr. appointments on Wednesday and Thursday. We miss you Grammy! Whenever we talk about Grammy coming Scott gets a sad face and says "bye-bye" while waving. We have to remind him she'll be back soon for Tyler's surgery.

Dance Dance Dance

We went to the Perry's house for the superbowl and Scott, Will, Ben and Elli had so much fun dancing while Danny played the piano. Scott also liked to break dance at times. Although I have no pictures from Sunday, Luke came over and danced with Scott on Tuesday. This picture doesn't do a very good job showing off their jam session. Scott loves playing with Luke.

UCSF Liver Appt

Saw Dr. Rosenthal today who thinks Tyler looks SOOO much better. The nurse said he looks like a totally different baby than how Susan explained him to be. Dr. Rosenthal said that he would be surprised if his bili counts were over 2, even though the labs might take a while to come down. He matched the lab the first week he guessed. He said to tell the cardiology people to make sure they knew who fixed up Tyler before his surgery. So that was good news. They are concerned about his weight gain and entertaining a feeding tube at night that we could take out during the day. We shall see. We saw Jolene, a baby, who had the norwood the same week as Tyler. She has the Glenn tomorrow and we pray for the McMullens and baby Jolene. She looks great and I know she will do fine. They told her that the surgery is usually much easier than the Norwood and if all goes well she could be in the ICU for 1 day and step-down for 1 week...that is in a perfect world and we all know Tyler likes to have us ride a few rollercoasters and take us on some joy rides along the way. I am planning that we will have a longer stay. A lot depends on what he needs fixed as well. So things are going well. He is still sleeping quite a bit and much happier than the first 4 months of his life.

Tyler

Weight gain = 0 oz. Total = 11 lbs. Same weight for 4 weeks. He isn't gaining weight since his heart is working so hard and using calories to pump. This past week he has been sleeping more and more. When he cried all the time, we wished he would just sleep. Now that he is sleeping all the time we wish he were up. The doctor said to expect him to sleep more and more as the weeks go on prior to his surgery. He said he is very sick, his heart is tired and he needs his surgery. When he is up he sure is cute and smiling. We love him so very much!! I guess I will enjoy these next couple of weeks of relaxation and sleep. He is 25% for height and his head growth is doing well which is great news. They said weight is the first to decline. His color is getting back to normal, which is also great news and he isn't in the GI distress he has been in since he was a baby. I think his bile/liver issues are finally getting better. 3 more weeks until the Glenn. It is funny how we are looking forward to his heart surgery. Insurance didn't cover his formula, but thanks to Brynn, we got it off Ebay. Thanks for the tip!!

Is this normal??

Scott applying gloss... Eyeshadow...I was a little worried about him poking my eye out.
And the final result... I am glad that he cares about our appearance.

Thank You!!

I am reading Glimpes Into the Life and Heart of Marjorie Hinckley. She says, "When you finally develop a little gratitude in your heart, make up your mind to express it. Appreciation unexpressed insn't appreciation. If you can't find someone to say thank you to for something, just take a look at your toothbrush and say, 'thank you for being. You are a wonderful little gadget." I feel fortunate that I have so many people to say thank and congratulate.

Thank you JANINE & GLEN on your willingness to fly all the way to California to give us a break.

MELISSA...getting into MIT for your MBA. Incredible!!

EMILY..you are getting married! Congrats!

Thank you DAYNA for being willing to watch Tyler from 9-12 midnight. Even though we got stuck in the ER, you came to the hospital with great food & arms to hold our little guy so we could eat.

Thank you DANNY for being a great husband and the best dad to Tyler and Scott.

Congratulations CHASE on getting into Georgetown for your JD/LLM!

Congrats VICTORY & DAN! Quinn is so cute and you have taught me the importance of patience these past 9 months of pregnancy.

Thanks MOM & DAD. You cook us great food, are shoulders to lean on and you love our kids unconditionally.

Thank you DENAE for sharing your story about why we don't always receive our righteous desires. I have a better understanding of a loving Heavenly Father because of you

Thank you BEAU. We talked about reference in church this month. Beau taught Luke about sitting still in church. He probably thought he was just teaching Luke, his 2 year old, but it was a great lesson for me as well.

Thank you BOGNERS. You are always willing to help with the kids and fill us with wisdom!

Congratulations JENNY & KEITH...Little Neil is adorable!!

Thank you LAUREL for your friendship, always checking in on Tyler and making me laugh.

TYLER...he reminds me not to complain and be grateful for all I have.

Congratulations on turning 1. Happy Birthday SIENA!!

Thank you BRYNN...you are such a great heart mommy. I look up to you and your patience prior to the Glenn as we face a surgery set-back.

Congrats KRISTIN & JEREMY! Audrey is beautiful and I am soo impressed with your attitute towards needing a C-section. You were full of gratitude and looked at the positives in a situation that most would have dwelt on the negative.

Thank you SCOTT! You remind me to laugh and love.

Thank you Susan, Anne, Dr. Rosenthal, Dr. Cooper, Dr. Hahn and so many who have helped Tyler. What would we do without you?

Thank you KRISTY! You are always so positive. I admire how you somehow found time to check on little Tyler on a day that you had every right to just think about what you were going through.

Thank you HEATHER! You have dealt with so many health issues this past year and never once complained or asked "why me?" I admire and look up to you so much. You give me strength and constanlty teach me to keep a positive attitude. I love you and feel so lucky to have you as my sister

Thank you KELLI. I was held up at the doctors and couldn't watch a friends baby. You came to my rescue!

Congratulations PARIS, ALIX, ANNIE, ELENORE, ELAINA, NOR, LISA, MARDEE and KATIE on your bumps.

EVERYONE who has thought and prayed for Tyler and our family. Thank you!

"Thank you" is a wonderful phrase. Use it. It will add stature to your soul. Never let a day go by without saying thank you to someone for something--and especially to your Heavenly Father.

Lab Results

Tyler's AST, ALT, GGT have all come down nicely which is a good sign. It may take a few weeks for his bilirubin to trend downward which is currently at 11. They will continue to monitor his liver once a week at UCSF until his heart surgery. He was up about every 1.5 hours last night which was a good thing so he could eat. He wasn't crying that much which makes night feedings fine. The pregestimil seems to give a better result with the color and consistency of his poop. Hopefully it will help him absorb some fat. It took him a while yesterday to start eating it which they say is normal This is Scott 1 year ago discovering his tongue. I imagine this is what Tyler feels like with his new formula.