Second Opinions-A recap

Today we got a phone call back from Dr. Azakie, our surgeon at UCSF. And after hearing what he said I wanted to run to the blog and post something called "You will not believe this!" But then I realized, I haven't posted everything that's gone on and that would be confusing. So here is an attempt at a quick recap.

January 18th-after two failed attempts due to illness Drew has his heart cath at UCSF

January 29th-we discuss the surgical options with Dr. Parrish, Drew's cardiologist. They are described to us as the Fontan or a "repair." We naively assume that a repair means putting Drew's heart back to the normal physiology and he (potentially) won't need any more surgery. We talk about getting second opinions. Dr. P recommends talking to Dr. Hanley at Stanford and Dr. Raff at UCD. In the meantime we find out that Dr. Hanley's daughter works for my father-in-law. Small world, divine intervention, fate?

February 11th-We meet with Dr. Raff for our first official second opinion. He says they would do a one and a half ventricle repair, which means they would leave everything that's been done to Drew's heart so far, place a patch between his ventricles and place a conduit from his right ventricle to his pulmonary artery. He would have a normal pattern of circulation and normal oxygenation, but abnormal physiology. The conduits would have to be replaced about every 12 years. He also says they could do a Fontan and we can choose. And he says he would have attempted a repair on Drew as a newborn and not done a Norwood.

February 15th-We get our second official second opinion from Dr. Hanley. He also thinks a 1.5 ventricle repair is the way to go and doesn't recommend a Fontan for us. He says he never would have done a Norwood on Drew and wonders why Dr. Azakie did one.

February 22nd-I speak to Dr. Hanley again and ask why he wouldn't do a Norwood. He says because it has a risk of 20% and doesn't restore normal oxygenation. He would have done a Ross procedure that has a risk of 2% and immediately restores normal oxygenation. It does however require periodic valve replacements. I ask why would Dr. Azakie do a more complicated surgery than absolutely necessary, and Dr. Hanley is curious as to the answer as well.

February 22nd (again)-I call Dr. Parrish to tell him what we've heard from all our surgeons and ask what to do next. He says we should go where we feel most comfortable. I feel most comfortable at a major pediatric heart center, so that would be Stanford or UCSF. After some whining on my part about how I'm just a parent, not a doctor so how can I make this decision, Dr. Parrish asks if I want him to tell me what to do. Yes! Then he said "are you going to do what I tell you?" and I said "maybe...What would you do if this was your four-year old?!" He said he would go to Stanford. And really, I've been leaning that direction, but I feel some loyalty to UCSF and the surgeon who saved my son's life. Twice. But I do know that Dr. Hanley is the surgeon with the most experience. So we had pretty much decided that we would be going to Stanford, but wanted to have one more conversation with Dr. Azakie. Which brings us up to date and to my title of "You will not believe this!"

February 29th-Dan talks to Dr. Azakie about his opinion on which surgery he would do now. He said he could do a 1.5 ventricle repair, but also thinks a complete repair is possible! This is what it sounds like. A normal heart! With a good chance at no more heart surgery! This is probably the only thing he could have said that would make me consider not going to Stanford. He says both surgeries have a risk of about 5%. He said he would have to make the decision about which surgery to do in the operating room. And the explanation he gave for doing a Norwood on Drew was that his aortic valve was much too small to support any kind of circulation.

Just when we got used to the idea that we would probably be going to Stanford and were resigned to the fact that Drew would have a lifetime of surgeries, he says this! So I guess I'm going to keep talking to doctors. Next on my list are Dr. Parrish and Dr. Hanley again!

Snow Day

Yesterday we decided to take the kids and drive up to play in the snow. We hurriedly gathered our snow clothes, some snacks, and our one little sled and took off up to the mountains. Once we got there we did some sledding, played with some snowballs and built a snowman. We didn't stay long, but the weather was gorgeous and we all had a fabulous time. The kids even stayed in a good mood the whole way home! I have to say I love living in California, where I can drive an hour to the snow or an hour to the bay. Here's some of my favorite pictures from the day, taken with my cute new camera:

Andrea's Birthday Pictures

Drew's Birthday Pictures

The Big 3-0

Yesterday my mom called to remind me that it was the last day I would ever be 29. Actually it was the last day I'd ever be 20-anything. I guess that makes it official. I am a grown-up. I don't really have a problem with being 30, it just doesn't seem right. How can I be 30 when I feel the same as I did when I was 18? Granted, my life is different, I have responsibilities, degrees, relationships, children. But inside my head I'm still 18.

This week I got myself a sassy new haircut, a sassy new red coat, and perhaps a bit of a sassy new attitude. I want to say, yes I'm 30, but by no means am I old! In fact, yesterday Dan took me to a wonderful birthday dinner at Slocum House and the waiter asked me "would you like more water ma'am?" to which I replied, "yes I would, but please call me miss!" Poor guy was scared of me the rest of the night! The food was so yummy though! We chose the tasting menu with wine pairings and tasted almost everything on the menu. It was so good!

This morning Dan and Ava brought me breakfast in bed (Drew was still sleeping). And tonight I'm going out to dinner (and maybe a little dancing) with just the ladies. Since Dan is also turning 30 this year we decided to forgo gifts and take a trip instead. We are hoping to go to Hawaii alone this summer.

For those of you out there in the blogosphere who have reached this milestone before me, please tell me why you love being in your 30s. Everyone says their 30s are better than their 20s so I'm curious to know why. I've been pretty happy up until now, so I guess it's good to think that it will only get better!

Best Husband Ever!

Sassy red coat

Breakfast in bed with Ava

Field Trip to the Fire Station

Today Drew's preschool class had a field trip to the fire station. When we got to school he told me he didn't want to wear a fire hat and he didn't want to ride a firetruck. That made me question how he was going to do once we got there. I know he's scared of loud noises and so I told him that they wouldn't turn on the sirens without telling us first. I also told him it's good to try new things, even if it's a little scary, because we might like them. He did so well, I was really proud of him for trying new things! He sat on the fire engine and enjoyed the tour of the station. They also watched a fire safety video and listened to how firefighters help people who are sick. When they brought out the stethoscope and blood pressure cuff he kept looking at me and saying "that's just like me!" He didn't want to be near the fireman when he was dressed in all his gear and his mask, but he wasn't the only one. When they left the kids all got fire hats and coloring books to take home. Drew ended up having a really fun day!

Checking out the firetruck

Holding the fire hose

Sitting in the firetruck

With his preschool class at the fire station

Opinion from Stanford

Dr. Hanley called on Friday while I was driving down to So Cal. Dan spoke with him and relayed this information.

1. He thinks it is clear that we should NOT have the Fontan.
2. He would recommend a 1 1/2 ventricle repair, which means he would leave the SVC attached to the pulmonary artery (the Glenn), place a patch near the VSD to make Drew's heart septated, and also attach an external conduit from the right ventricle to the pulmonary artery to restore a normal pattern of bloodflow.
3. It is not clear to him why Drew's surgeon did a Norwood in the beginning and he never would have gone that route.

It's good news that there is agreement between the two surgeons on what type of surgery should be done now. That makes it a little easier. The hard part is hearing that Drew never should have had a Norwood to begin with, and it might have been possible for him to have only one surgery. It sounds like both surgeons are saying now that that's been done there is no going back, and that is heartbreaking. I put another call in to Dr. Hanley to ask him why he wouldn't have done a Norwood, because it might make a difference in whether or not we trust his orignal surgeon to do the surgery this time. I am waiting for a call back. So for right now we are considering both UCSF and Stanford and need to do a little more digging before we have all the info we need. I would still like to talk to our surgeon at UCSF personally and get his opinion on things.

Sweet Baby

Me and Baby Ashley

On Friday Drew and I made the six hour drive down to Southern California to visit my best friend since jr. high and her brand new baby. She is so tiny and adorable and I just love her. I think this must be what being an aunt feels like. I am so glad that I was able to make this trip and to support my friend. I even got to help with her first bath at home!

Published

In September 2002 I began a masters program in Forensic Science at UC Davis, expecting to graduate in spring 2004. Well, Drew was born in February of that year and I had more important things on my mind than finishing the program. I had completed all of my coursework by the spring, but still had the business of finishing my research and writing my thesis to attend to. It is only through the encouragement and gentle reminders of my advisor that I ever finished it. In December 2006 I finally graduated from the program. And last month an article based on my thesis was published in the Journal of Forensic Sciences, with my name as the lead author. If you feel so inclined you can read it here.

Journal of Forensic Sciences
Volume 53, Issue 1, January 2008

Forensic Utility of the Mitochondrial Hypervariable Region 1 of Domestic Dogs, in Conjunction with Breed and Geographic Information*
Andrea L. Himmelberger, M.S.; Theresa F. Spear, M.A.; Jessica A. Satkoski, Ph.D.; Debra A. George, M.A.; Wendy T. Garnica, B.S.; Venkat S. Malladi, B.S.; David G. Smith, Ph.D.; Kristen M. Webb, B.S.; Marc W. Allard, Ph.D.; and Sreetharan Kanthaswamy Ph.D.
pages 81–89

There was also an article in the Sacramento Bee today about our parent support group Hearts of Hope. If you read all the way to the end there are a few lines from my interview. You can read that here.

Happy Friday!

Happy Heart Day

Our family has a tradition of visiting the hospital on Valentine's Day and bringing balloons to all the kids in the hospital. It started out the year after we had Drew when Dan approached me with his idea to skip going out to dinner and buying candy and bring some love to the hospital instead. Since then we've done it every year and we really enjoy it! We choose Valentine's Day because it is close to Drew's birthday and also happens to be Congenital Heart Defect Awareness Day. This year we bought 100 red heart balloons and attached each one to a bag of candy kisses with a note that said "From our hearts to yours. Love, a family who has been there." We also made plates of heart shaped sugar cookies with a note for the nurses.

Today we brought balloons to 36 kids in the pediatric unit, 25 babies in the NICU, and 18 kids in the PICU (we left some extras with peds). Drew was able to deliver some balloons personally to a couple of kids on the pediatric floor and some of the babies in the NICU. He was excited to see the babies and I think he remembered it from last year. It was so nice to teach him what it feels like to help someone else. I told him I was proud of him. I love this tradition! It feels really good to bring a true gift of love to those who could really use it and aren't expecting it. I never miss going out to dinner and the flowery parts of Valentine's Day because I am experiencing love with my family. And I think it's incredibly romantic that this was Dan's idea and I love his thoughtful, giving heart.

Thank you to all of our friends who helped us this year! My friends Katie and Jen helped fill the bags with candy and tie the notes on the bags. DeAnna helped me frost cookies and attach balloons to the bags AND helped pick up and deliver the balloons. There were so many they wouldn't all fit in one car! Kate helped me wrap up the cookies. And Faye watched Ava so that she could take her nap while we were gone.

Here's some pictures from today and the preparations that went into it.

If you want to learn more about congenital heart defects, please visit this site.

Consult with UCD

I'm sorry I didn't post sooner, but I wasn't exactly sure what to say. We did meet with the surgeon at UCD yesterday and we learned a lot. When we were told that Drew could have a two-ventricle repair by our cardiologist we thought it meant that they would undo what they've done and reconnect his heart to be just like a normal heart and he wouldn't need anymore surgeries.

Well, that is not what they meant. Or at least, not what Dr. Raff would recommend. It gets a bit complicated unless you know a lot about the anatomy of Drew's heart, but basically they would leave everything they've done, place a patch so that Drew would have two separate ventricles and place an external conduit from his right ventricle to his pulmonary artery. So his blood flow would follow a normal pattern, but his physiology would definitely not be normal. And conduits don't last forever and need to be replaced. Dr. Raff was guessing that a Hancock conduit would last about 15 years before it needed to be replaced. Risk of this surgery was estimated at 2-5% (of any complication from infection to death). Possible complications with this anatomy include stenosis and arrythmias, with Dr. Raff predicting we'd eventually have problems with arrythmias. When I asked him how they treat that, he said sometimes with medication, sometimes with a pacemaker, and sometimes with a transplant.

He presented us with the details of the other surgical option, which would be a Fontan. Risk of the surgery is lower, at about 1-2%. These surgeries typically last about 20 years and then a pacemaker or a transplant is needed. I told him I was scared of the Fontan because I knew that kids eventually need transplants and I just learned that transplants last about 10 years and they rarely re-transplant. He said that his bigger concerns were the possibility of developing PLE or plastic bronchitis. PLE I have heard of due to the unfortunate situation of a heart buddy developing the condition. I haven't heard of plastic bronchitis and I don't think I'm going to look it up. Also, he said with a Fontan Drew's exercise and endurance would be limited.

So we were a bit discouraged to learn that this was not the miracle fix we thought it would be, and that there will definitely be more surgeries in our future. It was also just reinforced that we don't know what the future holds as far Drew's heart is concerned. Transplant seems to be a possibility no matter which path we choose, and I don't like that. But it was still a good meeting, we learned a lot and got one extra opinion under our belts. I am very anxious to talk to Dr. Hanley from Stanford and hear what he has to say. We should hear from him tomorrow evening or Thursday morning. After that I want to meet with Dr. Azakie from UCSF because I haven't had a chance to talk to him myself yet. And then we'll make a decision about where to go from here.

CHD Awareness Week

February 7-14 is Congenital Heart Defect Awareness Week. Our parent support group, Hearts of Hope, is putting together some goodies for the cardiology teams that treat our kids in honor of this week. Since we have our consult with Dr. Raff at UCD today we are making the delivery there. I gathered the cupcakes, cookies, brownies, pretzels, truffles, and chocolates into a cute basket and added the adorable card that Amber made. I think it looks lovely and I hope they like it!

February 10th

Today is the anniversary of the worst day of my life. The day that we found out that no, we didn't have a perfect healthy baby boy the day before as we had thought. We had a very sick baby. And I relive each year on this day the moment I found out. I remember running behind the basinette as they rushed my day old baby to the NICU. I remember waiting outside the NICU while they stabilized him. And mostly, I remember that I only had a few hours of the bliss of having my brand new baby before it was destroyed by the reality that we might not ever bring him home with us. Those first few days are a blur, but not because we were sleep deprived by having our newborn wake us up every few hours. It was the shock, complete upheaval and disbelief. It was meeting with doctors, lots of them, to hear a diagnosis, a surgical plan, discussing our options that exhausted us.

I fight these feelings every time they come. I don't want to think about this stuff. I know that I am blessed abundantly by my family, friends, and church. It's not as if I am sad about today. I think I am greiving that one, horrible day. And every year from now until April 18th, I compare what we are doing now with what we were doing then. Feb 16, the day Drew had his first open-heart surgery. Feb 29, diaphragm placation & extubation, Mar 9 transferred back to UCD, April 13, g-tube surgery, and finally April 18 the day we brought him home, ten weeks after he was born. And mixed in there are Valentine's Day, my birthday, and Easter. All of which we "celebrated" in the hospital.

Every year I think, this will be the year that stuff doesn't bother me anymore. Yes, that was the worst day of my life, but that was then and it's over. But I wonder if that day will ever come. Maybe it's the kind of thing that I will never forget, never stop grieving. And so what if I have a couple of blue days around this time every year? The reason I fight these feelings is because it's unpleasant. It doesn't feel good. I want to focus on the positive. But maybe these feelings demand to be recognized. Maybe if I honor them and really feel them on this one day they can be safely tucked away the rest of the year.

February 9th

February 10th

February 9th

February 10th

Happy Birthday Drew

Four years ago today, a very special little boy entered the world. Andrew Thomas Himmelberger was born at 2:50 am and changed our lives forever. When he was born, we changed from being a newly married couple and we became a family. I am thankful every day that God blessed us with this little miracle. Today we celebrate his life with us and how much he has taught us about love, strength, and perseverance in the last four years.

Sad/Glad

Today was kind of a hard day for me. Dan is not feeling well, so I had all the birthday preparations to take care of on my own. I know a lot of moms do most of the work involved in taking care of the kids and the house, but Dan really does a lot. So to have him out of commission was a big deal. I was very stressed out. And then I was sad.

I usually get sad around Drew's birthday. I guess it's just a reminder of the shock we felt when we first learned of his condition and all that it would take to keep him with us. But I don't want to be sad! I want to be happy. I have a beautiful son, with a beautiful heart, and I would not change the way he is. I love him. It's not that I start thinking about that time in the hospital and the surgeries and the despair AND THEN feel sad. I just feel sad. Without thinking about anything. A friend of mine explained it to me like this. Your body just remembers. It's like seasons. A certain time will come around and my body remembers what it felt like. Anyway, since this typically happens around Drew's birthday I have been dreading it. I have been anxious in anticipation of it happening. So I'm hoping that was it and it's over.

Luckily I have a wonderful friend who graciously came over this afternoon and helped me out. She made more cupcakes, decorated them, helped me fill the favor boxes, get some dinosaur games ready, and prepare food. She also entertained and loved my children. She did all that while being 9 months pregnant and ready to have her baby any minute. Am I lucky to have a friend like that, or what?!

Birthday Celebration #1

We celebrated Drew's fourth birthday at preschool today. I made cupcakes and brought them for his class. Everyone got to take a dinosaur home. I wasn't there when they sang Happy Birthday, but the teacher was kind enough to take a few photos for me. It looks like Drew had fun!

Not my best work, but they'll do for preschool

Drew and friends enjoying their cupcakes

More friends eating cupcakes

The Birthday Boy

Dentist

Drew went to the dentist today. This is only the third time he's been and he did pretty well. He was definitely not excited to go and really not excited to have x-rays. There was some whining and crying, but he was able to do it. Then he had his teeth cleaned. Our dentist's office is so awesome! They have movies on the walls and on screens in the ceiling so the kids can watch while they are laying down having their cleaning. Anyway, there was more whining and crying, but I can't blame him. The poor kid is scared of anything medical now. But he always does what he has to do and I tell him that is what being brave is. He again used his deep breathing technique to calm himself down and I am so glad that he has a way to soothe himself. After the exam by Dr. Jeff, Drew got lots of prizes! He ended up with two inflatable animals, a bunch of stickers and a bunch of plastic dinosaurs from the treasure chest. I took a bunch of pictures, but you'd never guess he was unhappy from looking at them. What a trooper!

The oven's beeping at me (dinner's ready!) so I have to go, but I have a long night ahead of me of making cupcakes for Drew's class tomorrow and doing some work for his birthday party on Friday.

In the lobby

Playing a video game in the interior waiting area

On the special chair after his cleaning

Drew with all his loot!

Heart Day

Today was Heart Day at Drew's preschool. I ordered this shirt for him to wear when we make our yearly delivery to the UC Davis Children's Hospital. But it seemed appropriate for him to wear it today.

Sometimes I Fight the Giant

Every night when I put Drew to bed we read a short story from his children's bible. Usually he requests the"fish story" (Jonah) but tonight I suggested the "giant story" (David and Goliath). After finishing the story I tried to elaborate on it a little by explaining that David wasn't afraid to fight Goliath because he knew that God would protect him. I also told Drew that God loved David very much and He protects the people He loves. Drews reponse to my explanation almost brought me to tears. He said, "sometimes I fight the giant and God will protect me". I couldn't believe the depth of the metaphor he created. He continually amazes me with his level of understanding of what he has to go through and how he deals with his situation in his own special way.

Hope

I had an interesting day yesterday. It's amazing to me the range of emotions I can feel in any one day. In the morning I was fine. Drew was at preschool, Ava had some little friends over to play, life was generally good (except for my ridiculously cranky daughter). Then everyone left, Ava went to sleep and Drew was watching a movie. I sat on the couch, immobile. This business of trying to choose a hospital and a surgeon for Drew's upcoming surgery is driving me crazy. I wanted to crawl into my bed and pretend like it wasn't happening. I told Dan I was in a funk and I couldn't think of anything that would make me feel better. I was unable to make any decisions and if he wanted me to go to the grocery store he would have to make me a list. So he did and I went. Once I got there, I noticed he wrote at the bottom of the list "anti-funk treat." And I almost cried right there in the grocery store because he is so sweet and loves me even in my funkiness. Then I went to the pharmacy and they asked how Drew was doing. I told them, he's fine, but I'm not, holding back the tears. Finished my shopping and ended up at the cashier who also asked me how I was and I seriously had to bite my lip to keep from crying. Am I nearing the Britney Spears danger zone? I hope not, but sometimes I wonder. Anyway, I made it back to my car where I announced to no one in particular that "I am not OK" and then sobbed there in the parking lot for a while. I just don't feel qualified, knowledgeable, or capable of making this decision. There are so many factors. And I am not a pediatric cardiologist or surgeon or nurse or anything close. So how do I decide?

Last night was also the Hearts of Hope meeting. Dr. Mainwaring, a pediatric heart surgeon from Sutter, was there to speak with us. And, believe it or not, I left that meeting filled with hope and certain that Drew would be ok no matter which surgeon we chose (which, by the way, doesn't make the decision much easier). Each time I hear about the history of congenital heart surgery and the advancements they've made I'm in awe. Did you know that infant open heart surgery was pioneered in the 70s? As in, if you were born before that with a serious heart defect there was nothing they could do for you. And it wasn't until the 80s that they began to do heart surgery on newborns? This is a brand new field compared to most of medicine and they've already drastically reduced the risk of these surgeries. The Fontan, which was one of the options for Drew's third surgery, was orignally done in the 70s and 80s with a risk of 40%! Now it is considered one of the simpler heart surgeries and only has a risk of 1-2%. That is amazing!

Of course, I had a list of questions for Dr. Mainwaring, and he graciously answered each of them. Now I can see why all his patients love him. I sort of wanted to give him a hug before I left. I told him about Drew's situation and he said it was not unusual to do a Norwood and Glenn with his anatamy. He told me that Dr. Hanley actually trained Dr. Azakie when he was at UCSF (small world!). And he also said that if he really thought one hospital was much better than the other he would tell me, but that they both have great programs and great surgeons. He advised me to ask questions about statistics and use the numbers to help guide me. That was all very helpful information.

Oh, one last thing, a reporter from the Sacramento Bee was at the meeting last night and interviewed me about our story. I believe the article will be in the paper next week some time, so keep an eye out!